Download I Just Found Out - HIV REFERRAL GUIDE: Maine

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MAINE HIV REFERRAL GUIDE
Family Planning
Association of Maine
This brochure was prepared with funds to JSI Research & Training Institute, Inc. from the Centers for Disease Control and Prevention, Cooperative
Agreement # UT651CCU124364-01, and with support from the U.S. Department of Health and Human Services, Office of Population Affairs, Office
of Family Planning, Federal Project # 5FPTPA010002-26-00.
JSI Research & Training Institute, Inc.
235 Promenade Street, Providence RI 02908
Voice: 401.453.8201 | Fax: 401.453.7083 | Web: www.jsi.com
Available Online at www.famplan.org
Spring 2008
I Just Found Out...
MAINE HIV REFERRAL GUIDE
HIV REFERRAL GUIDE: MAINE
PROJECT DIRECTOR:
Jennifer Kawatu, RN MPH JSI Research & Training
PROJECT WORKGROUP:
Kini-Ana Tinkham, RN Family Planning Association of ME
Sarah Bly, Maine Center for Disease Control & Prevention
Josie Halpern-Finnerty, JSI Research & Training
Caitlin McCauley, JSI Intern
CONTRIBUTORS/REVIEW TEAM:
Heather Ross, LCSW Miriam Hospital
Philip Kane, Thundermist Health Center
Lorraine Asselin Moynihan, MA MSW RI Dept of Health
R. Bobby Ducharme, Miriam Hospital
Linda Eibel, NP Northwest Health Center
Sonia Gomes, Miriam Hospital
Curt Beckwith, MD Miriam Hospital
Carol Browning, MS RN, BC RI Dept of Health
Carolyn Campos, CHisPA
Tim Cavanaugh, MD Family Health Services
Susan Cu-Uvin, MD Miriam Hospital
Deborah Dean, MSPH JSI Research & Training
David Pugatch, MD Hasbro Children’s Hospital
R. M. Stineman, Independent Consultant
Emma Simmons, MD Memorial Hospital
Cover and FAQs design by Jack Boyce, Rockport Design
Family Planning
Association of Maine
This resource binder was prepared with funds to JSI Research & Training Institute, Inc.
from the Centers for Disease Control and Prevention, Cooperative Agreement #
UT651CCU124364-01, and with support from the U.S. Department of Health and Human
Services, Office of Population Affairs, Office of Family Planning, Federal Project #
5FPTPA010002-26-00.
JSI Research & Training Institute, Inc.
235 Promenade Street, Providence RI 02908
Voice: 401.453.8201 * Fax: 401.453.7083 * Web: www.jsi.com
Available online at www.famplan.org
Spring 2008
TABLE OF CONTENTS
I.
INTRODUCTION TO THE GUIDE
2
II.
GIVING RESULTS
a. Giving Results: HIV Counseling
b. Confirmatory Testing
c. Maine HIV Testing Sites
3
4
13
19
III.
MEDICAL HEALTH
a. Treatment Centers
b. HIV Medications
c. Clinical Trials
d. HIV and Hepatitis
e. Health Insurance
32
33
35
39
41
50
IV.
SEXUAL & REPRODUCTIVE HEALTH
a. Safer Sex and Prevention for Positive People
b. Reproductive Health and OB/GYN Care
57
58
68
V.
LIVING WELL WITH HIV
a. Taking Care of Yourself
b. Nutrition
71
72
81
VI.
SUPPORT SERVICES
a. AIDS Service Organizations
b. Support Groups, Hotlines and Mental Health
c. Domestic Violence Hotlines and Support
d. Substance Abuse Services
e. More Support Services
82
83
86
87
88
89
VII. RIGHTS & RESPONSIBILITIES
a. Disclosure, HIV Testing and the Law
b. Children and Legal Issues for Minors
c. Legal Issues for Non U.S. Citizens
91
92
105
109
1
INTRODUCTION
PROJECT PURPOSE AND BACKGROUND
This binder is designed as a referral guide to accompany the patient booklet,
“I Just Found Out . . . Frequently Asked Questions About Your HIV Test in
Maine” written for clients receiving a new HIV positive diagnosis in Maine.
The intent of this referral guide is twofold: to facilitate the provision of high
quality referrals to HIV positive clients; and to increase provider use of the
HIV Rapid Test by providing referral resources specific to Maine “at the tip
of your fingers.”
For the past several years JSI Research and Training Institute, Inc. has
offered training and technical assistance to reproductive health providers in
New England through a CDC cooperative agreement. The overall purpose
of the project is to support the integration of HIV prevention services into
reproductive health clinical and community settings. Many providers cite
the fear of giving a positive HIV result, especially with a Rapid HIV Test, as
a barrier both to increased testing and to implementing Rapid Testing where
they otherwise might want to. Many agencies and providers fear they would
not know what to say or where to refer their HIV positive clients and worry
about the process disrupting clinic flow.
This resource was developed as a collaborative effort to address this barrier,
coordinated by JSI project staff, the Maine CDC and the Family Planning
Association of Maine. The materials were piloted in Rhode Island, where
they were reviewed by specialists in HIV, HIV positive individuals, and a
diverse representation of individuals in order to ensure medical, technical,
and cultural appropriateness.
The FAQ’s and Referral Guide can be used by anyone doing HIV testing in
Maine, though they have been designed to facilitate referrals particularly
with the Rapid HIV Test.
2
HOW TO USE THIS GUIDE:
The references and resources in this guide should help to facilitate many of
the other referrals that you may wish to give. We hope that you will
familiarize yourself with the wide range of resources in this guide before
you find yourself sitting face to face with an individual receiving a positive
HIV result. If you take the time to get to know this guide you should be
well-equipped to help a client with a reactive result through the initial
delivery of results and to facilitate their referral to the “next steps” of
treatment and support. If this seems scary to you, remember that you do not
have to be an expert in HIV infection to deliver results. All that is expected
is that you provide results with a caring and non-judgmental approach, and
that you have the knowledge and understanding that will lead them to the
people who *are* experts in treating and dealing with HIV.
A NOTE ABOUT THE FORMAT:
On each tabbed section divider you will find a list of the topics covered in
that section area. On most topic pages you will see a box of text containing
information identical to the same section of the “I Just Found Out . . .”
patient brochure. Below the boxed text you will find more information on
the topic. This is intended to help you, the provider, understand and offer
more insight to a client with further questions and become familiar with
some of the issues they may be facing related to HIV diagnosis. Additional
materials pulled from outside sources on the topic follow behind each
“topic” page. You can make copies of these for clients if they have
particular questions or concerns or use them for your own reference. The
additional materials pulled from outside sources are listed under as
appendices at the bottom of each section tab.
We hope this referral guide contains most of the relevant information you
and your staff will need to provide high quality referrals to clients receiving
a new HIV diagnosis. If, however, you find new or updated materials it has
been produced in an easily modified binder for you to add to or update the
content.
Finally, we ask that you take a few minutes to provide feedback on the
material by filling out the evaluation form in the front pocket of the binder
or available at www.famplan.org. Thank you.
3
GIVING RESULTS
II.
GIVING RESULTS
a. Giving Results: HIV Counseling
b. Confirmatory Testing
c. Maine HIV Testing Sites
4
5
13
19
Appendices:
¾ Center for Disease Control and Prevention. Reporting a Rapid HIV Result.
In: Fundamentals of Waived Rapid HIV Testing and Prevention
Counseling. Atlanta: CDC; 2005.
¾ Center for Disease Control and Prevention. Quality Assurance Guidelines for
OraQuick. In: Fundamentals of Waived Rapid HIV Testing and
Prevention Counseling. Atlanta: CDC; 2005.
¾ Center for Disease Control and Prevention. Troubleshooting Guide for
Confirmatory Testing. In: Fundamentals of Waived Rapid HIV Testing
and Prevention Counseling. Atlanta: CDC; 2005.
¾ FPAM and JSI Research and Training Institute, Inc. HIV Testing Sites in
Maine. FPAM and JSI Research and Training Institute, Inc., 2007.
¾ Maine Center for Disease Control and Prevention. HIV Testing: Patient
Information. Maine: ME CDC; 2008.
¾ Maine Center for Disease Control and Prevention. New HIV Testing
Recommendations: Health Care Provider Information. Maine: ME CDC;
2008.
4
GIVING RESULTS: HIV COUNSELING
Rapid HIV Tests can be conducted with the “Single Session Counseling” model, during
which the risk assessment, behavioral counseling and harm reduction plan are conducted
primarily before and/or during the time when the specimen is collected and tested. Then,
the plan is adjusted as need be if the result is reactive. Results should ideally be given by
the same person that conducts any pre-test counseling who may be the same person
conducting the test, or a primary healthcare provider when done in the context of a
healthcare visit.
Traditional HIV tests (non-rapid) will also contain risk assessment, behavioral
counseling and harm reduction plan but will be conducted over two sessions. The main
difference is that you will know the result before the client returns a second time and can
have any necessary referrals prepared accordingly. As this test will be confirmed at the
lab, you do not need to re-test; you should simply refer the client on for care. The other
difference is the possibility of an indeterminate result, which means a result is
inconclusive (could indicate a recent infection or a test reaction to something other than
HIV). For an indeterminate result, you will advise the client to return for re-testing in 4
weeks.
Giving a Negative HIV Test Result:
1. Share the result in simple language, making sure they understand.
A negative result can be given using language such as,
“Your HIV test today was negative, meaning that antibodies were not found
in your system today.”
2. Discuss the 90 day window period and, based on client risk, the need for
subsequent testing.
3. Reinforce the prevention plan and make referrals and follow-up as necessary.
Giving a Positive HIV Test Result:
1. Share the result in simple language, making sure they understand.
For the rapid test, you can use language such as,
“The initial test result is positive, indicating that you are likely to be infected with
HIV.”
5
“This must be confirmed with another test to determine whether or not you have
HIV infection. We can take some blood today and send it to the lab for that
confirmatory test.”
With a traditional or Western Blot confirmatory test, you can use language such as,
“The HIV test result is positive; this means that HIV antibodies have been found in
your blood.”
Remember that your primary role at this moment is to attend to their emotional
response. It is important to stay with the client both physically and emotionally.
Take cues from the client as to what he/she needs from you, knowing that most
clients see testing positive for HIV as a crisis in their lives. Clients may be unable to
hear or integrate much information during this session.
Offer messages of hope and acknowledge the client’s feelings.
“Take your time, we have plenty of time to talk about the results.”
“How are you feeling about this?”
“What questions do you have?”
“This is hard news to hear. Let me tell you what we can do next.”
The priorities then will be to facilitate or arrange for confirmatory testing (if using a
rapid test), assess need for referrals and support for the individual such as mental
health support and an HIV specialty care provider, and ensure that you have contact
information for follow-up and a plan regarding confirmatory test results. Any
discussion of the client’s post-test options such as case management, medical care,
partner notification, support systems, etc. should be guided by the client’s ability to
attend to it.
2. Facilitate the blood draw or oral fluid collection for confirmatory test (with the
rapid test only).
**INDICATE ON LAB SLIP THAT THE RAPID HIV TEST WAS
REACTIVE**
3. Give Referrals – at a minimum to Specialty HIV Medical Care
If you can, make the telephone calls to set up appointments for HIV specialty care or
other services right there with the client. Most HIV specialty clinics have someone
on-call to speak to someone who is newly diagnosed if needed.
4. Assess need for emotional support
6
“It can be difficult dealing with the possibility that you’re infected with HIV. How
are you doing? Who can be supportive in dealing with this?”
Suicide – Every Counselor’s Fear
A common fear on the part of HIV counselors is that in the face of a positive HIV
test, their clients will become suicidal and they will not know how to deal with this or
how to help them. First, you should know that this reaction is extremely rare. Many
people show no emotion upon being given a positive result – it’s important to be
careful not to put our own emotions or preconceived ideas of how we think we would
feel onto a client.
That said, any suicidal thoughts or ideas expressed by the client should be taken
seriously, and appropriate referrals and support given. If the client does express
suicidal thoughts or feelings you can ask, “Is this bothering you so much that you are
thinking about killing yourself?” Asking the suicide question is appropriate if the
issue comes up. It demonstrates that you are genuinely concerned about the person in
distress. Offer to assist in obtaining whatever help he or she would like. If that person
is uncomfortable talking to you, or a family member or doctor, tell them they can
always call the Maine Statewide Crisis Hotline at 1-888-568-1112 or the National
Hopeline Center at 1-800-784-2433 or the mental health resources and hotlines listed
in this guide under “More Support.”
5. Prevention plan re: HIV Transmission
Remind the client of the importance of protecting oneself and others to avoid
transmitting the virus. Advise the client to adopt the behaviors discussed in the
prevention plan (i.e. to act as if he/she is HIV-infected) until a reactive rapid test has
been confirmed.
6. Confirm Contact Information and Follow Up Plan
Help your client make a plan:
ƒ Talk about the next few hours, week, two weeks
ƒ For instance, they may want to call in sick to work.
ƒ Help them think about who they do and do not want to tell (for instance, they may
not want to tell their boss).
ƒ Think about who they can go to for support.
7. Take a moment to yourself or to process with a co-worker.
As always, it’s important to maintain boundaries, confidentiality and be professional
while taking care of yourself. Remember, all that is expected is that you provide
results with a caring and non-judgmental approach, and that you have the knowledge
and understanding that will lead them to the people who *are* experts in treating and
dealing with HIV.
7
Giving a Non-reactive (Negative) Rapid HIV Test Result
Content
Provide test result clearly and simply.
Explain the meaning of a non-reactive
test result.
Emphasize that the result is based on
exposure that occurred at least 3 months
prior to the test.
Assess the client’s emotional reaction to
the result.
Message
ƒ
Your rapid HIV test result is negative.
ƒ
Your rapid HIV test result came back
non-reactive.
ƒ
This means that HIV antibodies were
not found in your blood.
ƒ
This means that the test did not
detect HIV antibodies in your blood.
ƒ
This means that, as of 3 months ago,
you were not infected with HIV,
unless you have had a possible
exposure within the past 3 months.
ƒ
This result is based on possible
exposure you had at least 3 months
ago.
ƒ
How are you feeling about this result?
ƒ
What questions do you have about
this result?
Adapted from the Centers for Disease Control and Prevention: Reporting Rapid HIV Test Results
Fundamentals of Waived Rapid HIV Testing and Prevention Counseling
8
Giving an Invalid Rapid HIV Test Result
Content
Explain that the test must be repeated.
Inform the client that the test could not
be interpreted.
Tell the client the reason(s) why the test
could not be interpreted.
Assure the client that quality insurance
measures are in place to make sure that
the test is conducted correctly.
Continue to assess the client’s emotional
reaction.
ƒ
Message
We need to repeat the process from
the beginning in order to provide you
with an accurate result.
ƒ
I would like to offer you another test.
ƒ
There was a problem when running
your test and it cannot be interpreted.
ƒ
The test is invalid and cannot be
interpreted because there was a
problem.
ƒ
Most of the time the problems are
related to the process of collecting
the specimen or to the test kits that
we use.
ƒ
Sometimes problems occur with the
test kits or blood collection process.
ƒ
When this happens, our protocol is to
repeat the test.
We have some safeguards in place
that help us identify when we have
problems running the test.
ƒ
ƒ
Our system has detected that there
was a problem while running your
test.
ƒ
We have measure in place to
determine when problems arise while
running the test.
ƒ
How are you feeling?
ƒ
What questions do you have?
Adapted from the Centers for Disease Control and Prevention: Reporting Rapid HIV Test Results
Fundamentals of Waived Rapid HIV Testing and Prevention Counseling
9
Giving a Reactive (Preliminary Positive) Rapid HIV Test Result
Content
Provide reactive result to this screening
test clearly and simply.
Explain the meaning of a reactive test
result.
Emphasize the need for confirmatory
testing.
Message
ƒ
Your screening test result is positive.
ƒ
I have your screening test result and it
is reactive.
ƒ
This means that the test detected HIV
antibodies in your blood.
ƒ
This is a strong indication that you
may have been infected with HIV.
ƒ
This result needs to be confirmed with
an additional test.
Remember that we talked about the
other test that we’ll need to do today to
confirm the result.
Further testing is always needed to
confirm a preliminary positive
screening test result.
(Counselor: you may allow some
silent time to absorb the results)
How are you feeling about this result?
What questions do you have about
this result?
Tell me your thoughts about what I just
said.
It is important to protect yourself to
avoid the possibility of infecting
yourself or others.
While waiting for the confirmatory test
result, you need to take precautions to
avoid transmitting the virus or
acquiring any other infections.
ƒ
ƒ
Assess the client’s emotional reaction to
the result.
ƒ
ƒ
ƒ
ƒ
Advise client to take precautions to avoid
transmitting infection to others while
awaiting confirmatory testing
ƒ
ƒ
A sample message for conveying this information could be: “Your screening test
result is reactive which means HIV antibodies have been found in your blood.
This result needs to be confirmed with an additional test. While waiting for the
confirmatory test result, it is important to take precautions to avoid transmitting
the virus. How are you feeling about this result?”
Adapted from the Centers for Disease Control and Prevention: Reporting Rapid HIV Test Results
Fundamentals of Waived Rapid HIV Testing and Prevention Counseling
10
Giving an Indeterminate Western Blot HIV Test Result
Content
Provide indeterminate result to this
screening test clearly and simply.
Explain the meaning of an indeterminate
test result.
Message
ƒ
Your test result came back
indeterminate.
ƒ
I have your test result and it is
indeterminate.
An indeterminate test means that the
test could not determine whether you
are infected or not.
This is an indication that you may
have recently been infected with HIV
very recently, or that something else is
reacting with the test to make it look
like that; but we will have to repeat the
test to determine which one it is.
We will need to follow up with an
additional test in about 3 weeks.
Further testing will be needed to
determine if you are infected with HIV.
Since you risks is high, we’d
recommend that you see a provider
who may do some additional testing.
(Counselor: you may allow some
silent time to absorb the results)
How are you feeling about this result?
What questions do you have about
this result?
Tell me your thoughts about what I just
said.
It is important to protect yourself to
avoid the possibility of infecting
yourself or others.
While waiting for the confirmatory test
result, you should take precautions to
avoid transmitting the virus or
acquiring any other infections.
ƒ
ƒ
Emphasize the need for confirmatory
testing.
ƒ
ƒ
ƒ
Assess the client’s emotional reaction to
the result.
ƒ
ƒ
ƒ
ƒ
Advise client to take precautions to avoid
transmitting infection to others while
awaiting confirmatory testing
ƒ
ƒ
11
Giving a Positive Confirmatory Western Blot HIV Test Result
Content
Provide positive result to this screening
test clearly and simply.
Explain the meaning of a positive test
result.
Allow the client time to absorb the test
results.
Message
ƒ
Your test result came back positive.
ƒ
I have your HIV test result and it is
positive.
ƒ
This means that the test detected HIV
antibodies in your blood.
ƒ
This means that the test shows that
you have been infected with HIV.
ƒ
(Counselor: you may allow some
silent time for the client to absorb the
news)
Had you expected it to come back this
way?
Take your time, we have plenty of time
to talk about the results and what is
next.
How are you feeling about this result?
What questions do you have about
this result?
Tell me what you are thinking.
ƒ
ƒ
Assess the client’s emotional reaction to
the result.
ƒ
ƒ
ƒ
Advise client to take precautions to avoid
transmitting infection to others
ƒ
ƒ
ƒ
Emphasize the importance of getting
linked to specialty medical care.
ƒ
ƒ
ƒ
Let’s talk about ways to protect your
self.
How do you plan to prevent getting
any other infections?
How do you plan to prevent
transmitting HIV to others?
Let’s talk about your medical care. Do
you have a doctor or a provider that
you would like to stay with, or would
you like me to make an appointment
with an HIV specialist?
You will need some more tests to
determine if you need medications
now or not.
They can answer your questions and
help you make decisions.
12
GIVING RESULTS: CONFIRMATORY TESTING
Where and how can I get confirmatory testing?
Anyone who has a positive rapid test must get another test to confirm the results. If you
have not yet had this second test, ask your doctor for a list of places that offer
confirmatory testing. Or contact:
ƒ
The State of Maine HIV Program, (207) 287-3747,
www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm for a list of anonymous and
confidential HIV testing sites throughout the state.
ƒ
Family Planning Centers in Maine, 1-877-326-2345,
www.mainefamilyplanning.org.
Confirmatory Testing for the Rapid HIV Test
ƒ
All patients who have a reactive (preliminary positive) rapid HIV test must be
given another test to confirm that the person being tested is infected with HIV.
ƒ
Confirmatory testing may be performed on either a whole blood or oral fluid
specimen.
ƒ
All rapid HIV test results must be followed up with a Western blot and/or
immunoflourescent assay (IFA) for confirmation.
ƒ
Indicate on the lab sheet that the specimen is from an individual who already received
a reactive rapid test result.
ƒ
Most confirmatory test results will be positive, unless in a low prevalence setting.
ƒ
If the confirmatory test is negative, however, repeat testing should be performed with
a blood specimen. If an oral specimen was used, repeat testing should be performed
with a blood specimen since the oral fluid test is slightly less sensitive than the blood
test. The CDC also recommends a sample also be sent to the CDC for further testing
for HIV-2, and to re-test in 30-60 days.
ƒ
If the confirmatory test is indeterminate, for blood specimens the person should be
advised to return for repeat testing in one month. For oral fluid specimens, the
Western blot or IFA test should be repeated using a blood specimen. Refer to an HIV
specialist for repeat testing.
ƒ
Once a patient is confirmed positive, they should be connected to care. Several
special blood tests will be run, including an RNA test and CD4 count. This is
13
essential so that the patient and physician can know the extent of virus in their body
(number of copies) and how many T cells they have. Both numbers are needed by a
physician to recommend treatment.
ƒ
A confirmatory test sample should be collected by you in the same visit after a patient
has received a reactive result with a rapid test. If the patient opts to go elsewhere for
confirmatory testing, counsel on risk reduction and refer to another testing site.
14
After Testing
Overview
Quality assurance extends to those activities completed following the performance
of the test. Each site should have established procedures for:
ƒ
Reporting and recording results,
ƒ
Referring specimens (or test subjects, if specimens are not collected on-site)
for confirmatory testing,
ƒ
Managing confirmatory test results, and
ƒ
Conducting external quality assessment.
Reporting results
Reporting procedures should describe how results are provided to the person
being tested (verbal and/or written results) and how results are documented in the
person’s chart and in the test result logs. Some States have laws and regulations
that include certain reporting criteria for HIV testing results. Check with your
State agency for more information on these requirements. See Appendix A for
State agency contact information and Appendix E for an example of a test result
log.
Referral for
confirmatory
testing
Whenever the OraQuick test result is reactive (preliminary positive), a
confirmatory test must be performed to confirm that the person being tested is
infected with HIV. Therefore, each site must have established procedures for
referral of either test specimens or persons being tested for confirmatory testing
when OraQuick results are reactive. If specimens are collected on-site, the site
must establish procedures describing how to collect, label, process, store and
document specimen transfer; transport the confirmatory test specimens to the
site(s) where they will be tested; and obtain the confirmatory results to give to the
client/patients. It should be indicated on the specimen transfer sheet that the
specimen is from an individual who had a reactive OraQuick rapid test result. See
the Appendix F for an example of a specimen transfer sheet. Collecting
confirmatory specimens on-site may improve follow-up, since some clients may
not go elsewhere for the testing or to obtain results. However, if the site is not
able to collect confirmatory test specimens, a procedure must be in place for
referring persons to another site to obtain this testing.
QA Guidelines for OraQuick
After Testing (continued)
Confirmatory
testing protocols
Follow up testing
for negative
confirmatory result
Follow up testing
for indeterminate
results
Managing
confirmatory
results
For confirmatory testing, the current standard testing algorithm should be
followed, with the following exceptions:
ƒ
All OraQuick reactive (preliminary positive) results must be followed up with
either a Western blot or immunofluorescent assay (IFA) for confirmation.
ƒ
Confirmatory testing can be done on blood (plasma, serum or dried blood
spots) or oral fluid specimens. Urine testing should not be performed due to
its lower sensitivity (i.e., ability to detect positive results).
ƒ
With blood specimens, enzyme immunoassay (EIA) screening tests prior to
the Western blot or IFA confirmatory test are optional. If an EIA is
performed, even if it is non-reactive, the specimen must proceed to Western
blot or IFA testing (reactive EIA specimens will automatically be tested by
Western blot or IFA). For oral fluid testing, both EIA and Western blot
testing should be performed to confirm results.
Most confirmatory test results will be positive; however, some may be negative or
indeterminate. If the confirmatory test result is negative, specimen mix-up needs
to be ruled out versus a false positive OraQuick result. If the Western blot or IFA
test is negative, it is recommended that:
ƒ
For blood specimens, a confirmatory test should be repeated with a new
specimen to rule out specimen mix-up.
ƒ
For oral fluid specimens, a repeat confirmatory test with a blood specimen
should be done, since the oral fluid test is less sensitive than the blood test.
Occasionally, confirmatory test results are indeterminate. If the Western blot or
IFA is indeterminate, it is recommended that:
ƒ
For blood specimens, the person should be advised to return for repeat testing
in one month. See CDC’s Revised Guidelines for HIV Counseling, Testing
and Referral found at
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5019a1.htm.
ƒ
For oral fluid specimens, the Western blot or IFA test should be repeated
using a blood specimen.
OraQuick testing sites that refer specimens for confirmatory testing should have
established procedures describing how to:
ƒ
Match the client’s/patient’s confirmatory test results with their OraQuick
results to find potential discrepancies and to ensure that testing was performed
according to the protocol described above,
ƒ
Report the test result to the person being tested, and
ƒ
Obtain any additional specimens needed to resolve potential specimen mix-up
and for retesting, as needed.
QA Guidelines for OraQuick
After Testing (continued)
Handling result
discrepancies
Procedures should describe how to handle result discrepancies when the OraQuick
result was reactive and the confirmatory test negative or indeterminate. If the
laboratory providing confirmatory testing performed an EIA test only and
reported a non-reactive or negative result, the OraQuick testing site should contact
the confirmatory testing laboratory and request a Western blot test or IFA test. If
the original specimen is not available, a new specimen will need to be collected
from the person in question to be used for confirmatory testing.
External
assessment
External assessment, or an evaluation of the testing process by a source outside
the testing site, can look at how testing is being performed and whether it is being
performed reliably. It can also help to identify existing or potential problems.
Moreover, information gathered can provide an educational tool to improve
performance. Some form of external assessment is highly recommended, but it is
not required by Federal (CLIA) regulations since the test is waived and the test kit
manufacturer does not specifically require it.
Methods for
external assessment
Every reactive OraQuick test is externally assessed by a second, confirmatory test.
However, if there is a low prevalence of HIV infection in the population being
testied, these assessments may be rare and will not provide an external check for
the majority of the results, i.e., those that are nonreactive. Other ways to assess
performance may be needed. Some external assessment mechanisms include:
ƒ
Comparing the OraQuick reactive results with the confirmatory test results.
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Arranging for someone outside the organization to observe testing.
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Participating in a proficiency testing or external evaluation program (for more
information on these programs, see Appendix G).
QA Guidelines for OraQuick
Troubleshooting Guide for Confirmatory Testing
Problem
Confirmatory test
result does not agree
with rapid test result
(i.e., RT result is
reactive; confirmatory
test is negative or
indeterminate)
Potential Causes
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Specimen mix-up
Testing during HIV
window period
(varying test
sensitivities)
Clients with
interfering medical
conditions
Specimens with
interfering
substances
Action
Procedures should describe how to
handle discrepancies, as follows:
ƒ RT result is reactive,
confirmatory test is negative
o Blood specimen – repeat
confirmatory testing with new
specimen to rule out mix-up
o Oral fluid specimen – repeat
confirmatory testing using a
blood specimen
ƒ RT is reactive, confirmatory test
is indeterminate
o Blood specimen – the client
should return for repeat
testing in one month
o Oral fluid – repeat the
Western blot or
immunofluorescent assay
(IFA) test with a blood
specimen
ƒ If the confirmatory testing
laboratory performed enzyme
immunoassay only, contact the
confirmatory testing lab and
request a Western blot or IFA
test on the same specimen, if it
is still available. If the specimen
is not available, recall the client
and collect a new specimen for
confirmatory testing
RT = rapid test
Fundamentals of Waived Rapid HIV Testing and Prevention Counseling
Adapted from the Centers for Disease Control and Prevention: Providing HIV Test Results
18
Maine Testing Sites 2008
Agency Name/
Type
Phone Number
(Area Code 207
Unless noted)
Address
Other:
ƒ Hours
ƒ Cost (If Known - Free? Sliding Scale?)
ƒ Appointment Needed? (Y/N)
ƒ Language(s) Spoken
ƒ Rapid Testing Available? (Y/N)
ƒ Special Population(s) Served
ƒ Confidential/Anonymous available? (Which?)
•
1. Lewiston STD
Clinic (CTR Site)
795-4019
179 Lisbon St
Lewiston, ME 04243
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•
•
•
•
•
•
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2. Bangor STD
Clinic (CTR Site)
947-0700
103 Texas Ave.
Bangor, ME 04401
•
•
•
•
•
•
3. HealthReach
Harm Reduction
(CTR Site)
621-3793
9 Green St.
Augusta, ME 04330
•
•
Free testing for high risk individuals, others $30.
No one turned away for inability to pay
Rapid testing available
Appointments encouraged
Hours: Mon-Fri 9am-5pm and Tues/Thur 5-7:30pm
Access to language line for translation services
Confidential and Anonymous testing offered
Free testing for high risk individuals, others $50.
No one turned away for inability to pay
Rapid testing available
Appointments welcome, but not necessary
Hours: 8-4:30 Mon-Fri, clinics Tues 2-3:30pm and
Wed evening 4-7pm (walk-in)
French interpreted on-site
Confidential and Anonymous testing offered
Free testing for high risk individuals, others $35.
No one turned away for inability to pay
Rapid testing available
Appointments required
Hours: Call Mon 8:30-4:30 and Wed 1-4pm to
schedule an appointment convenient for client
Access to language line for interpretation services
Confidential and Anonymous testing offered
Maine Testing Sites 2008
•
•
•
•
4. Down East AIDS
Network (CTR Site)
5. Eastern Maine
AIDS Network
(CTR Site)
6. Frannie Peabody
Center (CTR Site)
7. Frannie Peabody
Center (CTR Site)
8. Health 2000
(CTR Site)
25A Pine St.
Ellsworth, ME 04605
•
•
•
990-3626
370 Harlow St.
Bangor, ME 04402
•
•
•
•
•
•
•
•
•
749-6818
49 Oak St.
Portland, ME 04101
749-6818
Meadowbrook Plaza
647 US Route 1
York, ME
03909
221-5234
15 Monument Square, 4th
Floor
Portland, ME 04101
667-3506
•
•
•
•
•
•
•
•
•
•
•
Free testing for high risk individuals, no one turned
away due to inability to pay
Rapid testing available
Walk ins acceptable
Hours: Mon-Thurs 8:30am-3pm and Fri 8:30am12pm
Spanish spoken on site
Confidential and Anonymous testing offered
Free testing for high risk individuals, others $25 for
with a sliding fee scale
Rapid testing available
Appointments recommended
Hours: Mon-Fri 9am-5pm, Thurs. until 7pm
English only spoken on site
Confidential testing
Free testing
Rapid testing available
By appointment or walk ins on Wed 12-7pm
With advance notice: Spanish, French, Arabic and
other African languages
Confidential and Anonymous testing offered
Free testing
Rapid testing available
By appointment or walk ins Tues 1-4pm
With advance notice: Spanish, French, Arabic and
other African languages
Confidential and Anonymous testing offered
Free testing
Rapid testing NOT available
Appointments not required
Hours: Mon/Weds/Fri 9:30am-4:30pm
English only spoken on-site
Maine Testing Sites 2008
•
•
•
•
•
•
•
9.
Portland STD
Clinic (CTR Site)
10. Healthways HIV
Program (CTR Site)
11. just guys (CTR
Site)
12. Downeast Health
Services Calais
Family Planning
Program
874-8446
103 India St.
Portland, ME 04101
207-733-1090
ext. 2156
43 South Lubec Rd.
Lubec, ME 04652
207-621-3794
9 Green Street, Second
Floor
Augusta, Maine 04330
•
•
•
•
•
•
•
37 Union Street
Calais, ME 04619
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454-3634/
454-1800/
1-800-924-2628
•
•
•
•
•
•
Special populations served-Black men having sex
with other men
Confidential and Anonymous testing offered
Free testing for high risk individuals.
No one turned away due to inability to pay
Rapid testing available
Appointment required for HIV testing
STD services are on a walk in basis Tues/Thurs 36pm
English, French, Spanish spoken on site. All other
languages accessible through the language line
Confidential and Anonymous testing offered
Free testing for high risk individuals
Rapid testing available
By appointment only
Hours: 8am-5pm
Testing available in office and through outreach
(homes, any confidential space)
Access to interpreters
Confidential and Anonymous testing available
Free testing for men having sex with other men
Rapid testing available
Appointment required-please call for availability
Access to language line for translation services
Anonymous testing only
Cost of testing $50.00
Rapid Testing NOT available
Appointment required
Hours: Thurs., appointment required
Access to language line for translation services
Confidential testing offered
Maine Testing Sites 2008
13. Downeast Health
Services Ellsworth
Family Planning
Program
667-5304
1-800-492-5550
52 Christian Ridge Road
Ellsworth, ME 04605
14. Downeast Health
Services Machias
Family Planning
255-3391
1-800-313-1223
71 Court Street
Machias, ME 04654
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15. FPAM Augusta
Family Planning
626-3426
43 Gabriel Drive
Augusta, ME 04332-0587
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16. FPAM Belfast
Family Planning
17. FPAM
Damariscotta
Family Planning
338-3736
147 Waldo Avenue
P.O. Box 18
Belfast, ME 04915
563-1224
Pine Grove Plaza, Route 1
P.O. Box 610
Damariscotta, ME 04543
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Cost of testing $50.00
Rapid testing NOT available
Appointment required
Hours: Mon- Thurs
Access to language line for translation services
Confidential testing offered
Cost of testing $50.00
Rapid testing NOT available
Appointment required
Hours: Thurs by appointment
Access to language line for translation services
Confidential testing offered
Free test for high risk individuals, sliding fee scale,
insurance accepted
Rapid testing available
Appointment required
Hours: Mon 8-4,Teens 2:30 – 4:00, Tues/ Wed
8:00-7:30, Fri 8:00-4:00
Access to language line for translation services
Confidential testing offered
Free test for high risk individuals, sliding fee scale,
insurance accepted
Rapid testing available
Appointment required
Hours: Mon.8:30-4:00, Tues. 10-30-6:30, Teens
2:00-4:00, Wed 8:30- 4:00
Access to language line for translation services
Confidential testing offered
Free test for high risk individuals, sliding fee scale,
insurance accepted
Rapid testing available
Appointment required
Maine Testing Sites 2008
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18. FPAM Rockland
Family Planning
19. Health Services
ACAP Fort Kent
Family Planning
20. Health Services
ACAP Houlton
Family Planning
594-3114
22 White Street
P.O. Box 866
Rockland, ME 04841
834-3513
486 Frenchville Road
RR 2 Box 95
Fort Kent, ME 04743
532-5303
91 Military Street
Houlton, ME 04730
21. Health Services
ACAP Presque Isle
Family Planning
169 Academy Street
Presque Isle, ME 04769
768-3062
22. KVCAP
Waterville Family
859-1638
97 Water Street
Waterville, ME 04903-1529
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Hours: Wed 10:30-6:30 Teens 2:00-4:00
Access to language line for translation services
Confidential testing offered
Free test for high risk individuals, sliding fee scale,
insurance accepted
Rapid testing available
Appointment required
Hours: Mon 8:30-6:30 Teens 1:00-4:00, Tues
10:30-6:00, Thurs 8:30 -4:00
Access to language line for translation services
Anonymous and confidential testing offered
Free test for high risk individuals, others $25.
Rapid testing available
Appointment is needed
Hours: Mon-Thurs 7:30-4:30, Fri 8-12 pm
English and French spoken on-site
Anonymous and confidential testing offered
Free test for high risk individuals, others $25.
Rapid Testing available
Appointment required
Hours: Mon., Tues., Wed., and Fri. 8-5 and Wed till
6:00pm
English spoken on-site
Anonymous and confidential testing offered
Free test for high risk individuals, others $25.
Rapid Testing available
Appointment required
Hours: Mon-Fri 8-5
English spoken on-site
Anonymous and confidential testing offered
Sliding fee scale (some funds available to assist
with cost, based on circumstances)
Maine Testing Sites 2008
ƒ
ƒ
Planning
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23. KVCAP
Skowhegan Family
Planning
ƒ
ƒ
474-8487
1-800-542-8227
26 Mary St.
Skowhegan, ME 04976
973-3650
262 Harlow Street
P.O. Box 1162
Bangor, ME 04401
25. Penquis
Dexter Family
Planning
924-7383
311A Corinna Rd
PO Box 45
Dexter, ME 04930
26. Penquis
Dover-Foxcroft
Family Planning
564-2847
50 North Street
Dover-Foxcroft, ME 04426
24. Penquis Family
Planning
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Rapid testing NOT available
Appointment required, walk-in clinic on Mon
afternoons
Hours: M-Fri: 8:00-4:30
English spoken on-site. Access to language line
for translation services
Confidential testing offered
Sliding fee scale (some funds available to assist
with cost, based on circumstances)
Rapid testing NOT available
Appointment required, walk-in clinic on Tues
afternoons
Hours: M-Fri: 8:00-4:30
English spoken on-site. Access to language line
for translation services
Confidential testing offered.
Sliding fee scale
Rapid testing available
Appointment required
Hours: Mon, Tues, Thurs, Fri 8:00-4:30
English spoken on-site
Confidential testing offered
Sliding fee scale
Rapid testing available
Appointment required
Hours: Tues, Wed 8-4:30
English spoken on-site
Confidential testing offered
Sliding fee scale
Rapid testing available
Appointment required
Hours: Mon, Tues, Thurs, Fri 10-4:30
Maine Testing Sites 2008
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ƒ
English spoken on-site
Confidential testing offered
Sliding fee scale
Rapid testing available
Appointment required
Hours: Every other Wed, Thurs 8-4:30
English spoken on-site
Confidential testing offered
Sliding fee scale
Rapid testing available
Appointment required
Hours: Every other Wed, Tues 8-4:30
English spoken on-site
Confidential testing offered
Sliding fee scale
Rapid Testing NOT available
By appointment and walk-in welcomed
Access to language line for translation services
Confidential tests offered
Sliding fee scale
Rapid Testing NOT available
By appointment and walk-in welcomed
Access to language line for translation services
Confidential tests offered
Sliding fee scale
Rapid Testing NOT available
By appointment and walk-in welcomed
Access to language line for translation services
Confidential tests offered
Sliding fee scale
Rapid Testing NOT available
27. Penquis
Lincoln Family
Planning
794-3313
119 Main Street
Lincoln, ME 04457
28. Penquis
Millinocket Family
Planning
723-4994
24 Balsam Drive
Millinocket, ME 04462
282-6620
281 Main Street, PO Box
1556
Biddeford, ME 04005-1556
30. PPNE
Portland Family
Planning
797-8881
970 Forest Avenue
P.O. Box 1519
Portland, ME 04104-1519
31. PPNE
Sanford Family
Planning
324-9385
886 Main Street, Suite 302
Sanford, ME 04073-0589
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725-8264
P.O. Box 234 (mailing
address)
ƒ
ƒ
29. PPNE
Biddeford Family
Planning
32. PPNE
Topsham Family
Maine Testing Sites 2008
Planning
Brunswick, ME 04011-0234
[Cleveland House, 4
Bowdoin Mill Island, Ste.
101, Topsham, 04086
(physical address)]
33. Western Maine
Community Action
Health Services
Lewiston Family
Planning
795-4007
1-800-587-9354
PO Box 1038
179 Lisbon Street
Lewiston 04240
34. Western Maine
Community Action
Health Services
Farmington Family
Planning
778-4553
193 Front Street Suite 5
Farmington, ME 04938
364-3960
218 Penobscot Street
Rumford, ME 04276
743-2066
39 Lower Main Street, PO
Box 151
Norway, ME 04268
35. Western Maine
Community Action
Health Services
Rumford Family
Planning
36. Western Maine
Community Action
Health Services
Norway Family
Planning
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ƒ
By appointment and walk-in welcomed
Access to language line for translation services
Confidential tests offered
ƒ
ƒ
ƒ
Sliding fee scale
Rapid testing NOT available
By appointments, walk-ins welcomed; teen walk-ins
Monday afternoons
Hours: Mon- Fri, day and evening appts.
English spoken on-site. Access to language line
for translation services
Confidential testing offered
Sliding fee scale
Rapid testing NOT available
By Appointment, walk-ins welcomed
Hours: Mon, Tues, Thurs and Fri, 8:30-4:00
English spoken on-site. Access to language line
for translation services
Confidential testing offered
Sliding fee scale
Rapid testing NOT available
By Appointment, walk-ins welcomed
Hours: Mon , Wed, & Fri, by appt
English spoken on-site. Access to language line
for translation services
Confidential testing offered
Sliding fee scale
Rapid testing NOT available
By Appointment, walk-ins welcomed; teen walk-ins
Thurs afternoon
Hours: Mon, Tues, Thurs, & Fri by appt.
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Maine Testing Sites 2008
ƒ
37. Western Maine
Community Action
Health Services
Porter
Sacopee Valley
Health Outreach
Clinic
ƒ
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ƒ
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625-8126
70 Maine Street
Porter, ME 04068
ƒ
•
•
•
38. Merrymeeting
AIDS Support
Services
725-4955
124 Maine St. Suite B
Brunswick, ME 04011
•
•
•
•
•
•
•
39. Wabanaki Mental
Health (CTR Site)
990-0605
187 Exchange St.
Bangor, ME 04401
•
•
English spoken on-site. Access to language line
for translation services
Confidential testing offered
Sliding fee scale
Rapid testing NOT available
By Appointment, walk-ins welcomed
Hours: Tues and Fri 1 – 4 pm by appt
English spoken on-site. Access to language line
for translation services
Not offering HIV testing during family planning
hours
Free testing for high risk individuals
Rapid testing available
Appointment required-please call for availability in
office and out in the community
English and Spanish spoken on-site
Anonymous testing offered
Free testing
Rapid testing available
Appointments only required for after hours
appointments
Hours: 8am-4:30pm
Passamaquoddy, Maliseet, Micmac and English
spoken
Special population served: Native Americans
Confidential and Anonymous testing available
What patients need to know:
•
The HIV test is voluntary and they have the
right to choose whether or not to test
•
They have the right to ask any questions about
HIV and the HIV test before they decide
whether or not to test
•
Resources:
Maine HIV, STD and Viral Hepatitis Program
207-287-3747
www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm
What is HIV?
A virus that infects the body and attacks the
cells that help fight infection and disease. HIV
causes AIDS, a life-threatening disease. HIV
lives in blood, semen, vaginal fluid and breast
milk. HIV can be passed through unprotected
sex or sharing needles/works and from an HIV
infected mother to her baby during pregnancy,
delivery and breastfeeding.
•
•
For assistance in giving a positive HIV result:
HIV, STD, Viral Hepatitis Program
207-287-3747
For questions interpreting the HIV testing law,
contact legal counsel for your organization, or:
What is the HIV test?
Maine Medical Association 207-622-3374
The HIV test looks for HIV antibodies. These
antibodies are made in the body when a person
is infected with HIV. There are a variety of
rapid and conventional HIV tests available and
specimen sources include an oral specimen,
blood, and serum.
Maine Hospital Association 207-622-4794
To read the Revised Recommendations for HIV
Testing of Adults, Adolescents and Pregnant
Women in Health Care Settings go to:
www.cdc.gov/mmwr/PDF/rr/rr5514.pdf
Risks and benefits of testing:
Risks include fear and anxiety while waiting
for the result, concern about confidentiality
and fear of discrimination. Benefits to knowing ones HIV status include getting early treatment for HIV and taking steps to reduce transmission to partners if HIV positive and if HIV
negative, taking steps to stay that way.
•
•
Meaning of positive and negative test results
and how they will be communicated to the patient.
If the patient tests HIV positive, referrals to
medical care and other services as needed.
4
Go to:
www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm
for a list of providers offering a variety of
services including:
•
confidential and anonymous HIV testing
•
HIV case management, care and prevention
•
AIDS Drug Assistance Program
•
Ryan White Programs
•
MaineCare benefits for people living with HIV
5
NEW HIV Testing
Recommendations
Health Care Provider
Information
In September 2006, the U.S. CDC released Revised Recommendations for HIV Testing of
Adults, Adolescents and Pregnant Women in
Health Care Settings. The purpose of these recommendations is to make HIV testing a routine
part of medical care, both inpatient and outpatient and expand gains made by diagnosing HIV
infection among pregnant women. It is recommended that health care providers offer HIV testing to all persons age 13-64 years and to all pregnant women.
To facilitate routine HIV testing in all health care
settings, changes were made in the Maine HIV
testing law.
Key points of the revised Maine HIV
testing law:
Why test routinely for HIV ?
•
•
•
•
HIV goes unrecognized. About 25% of adults
with HIV in Maine don’t know they are infected because they haven’t been tested. For
adolescents with HIV, it’s estimated about 50%
don’t know. This adds up to about 300-500
Mainers who could benefit from treatment for
HIV infection if they were diagnosed.
About 40% of people with HIV in Maine are
diagnosed in the late stages of their disease.
Often people with HIV infection visit health
care settings years before receiving a diagnosis,
but are not tested for HIV.
Individuals tested and treated earlier in their
infection tend to have better health and quality
of life than those testing late in their disease.
More than half of new HIV infections are
caused by people who are infected but untested
and unaware of their infection.
•
About 65% of U.S. adults agree that HIV testing should be treated the same as screening for
any other disease (Kaiser 2006).
•
HIV testing is the gateway for both treatment
and prevention.
1
•
•
•
•
•
•
•
•
How to conduct post-test counseling
for HIV positive results:
Separate written consent to be tested is no longer
required.
Informed consent to be tested is required.
Providing an opportunity for the patient to decline the test is required
Pre-test counseling is no longer required
A pre-test written document is no longer required
Post-test counseling is required only for positive
test results
Personal contact is required for positive test results
A separate release of information continues to be
required for medical records regarding HIV.
For assistance in providing an HIV positive test
result contact the Maine Center for Disease Control and Prevention (see page 5 for contact information).
•
Test results and their reliability and significance;
How to obtain informed consent:
•
Information on good preventive practices and
risk reduction plans; and
•
Referrals for medical care, support services
and legal services, as needed.
Informed consent means permission is given after a
proper explanation. A proper explanation for HIV
testing should include:
•
The nature and purpose of the test
•
The risks and benefits of the test
•
Other testing options, including the consequences
of no test, and
•
An opportunity for the patient to ask questions.
Documentation of informed consent may be done
with a consent form or through a note in the patient’s
medical record. The note should describe the patient
has an opportunity to agree or decline to test.
Post-test counseling for positive HIV results is
required. The offer of face-to-face counseling
must be made and if declined, the provider may
use an alternative means of providing post-test
counseling.
Personal counseling must include:
An entry in the medical record that summarizes
the contents of the discussion should be made.
It is permissible under health information privacy
laws to share positive HIV results with another
qualified professional from within the provider’s
health care organization so that the other qualified professional may provide the positive HIV
result to the patient without first obtaining an
additional consent from the patient.
According to Maine law, adolescents may seek and
give consent for HIV testing without parental consent.
2
3
MEDICAL HEALTH
III.
MEDICAL HEALTH
a. Treatment Centers
b. HIV Medications
c. Clinical Trials
d. HIV and Hepatitis
e. Health Insurance
32
33
35
39
41
50
Appendices:
¾ AIDS InfoNet. What is Antiretroviral Therapy (ART)? Fact Sheet Number
403. June 25, 2006. Available at: www.aidsinfonet.org. Accessed
December 2006.
¾ AIDS InfoNet. 2006 Antiretroviral Therapy Guidelines: Fact Sheet Number
404. October 10, 2006. Available at: www.aidsinfonet.org. Accessed
December 2006.
¾ AIDS InfoNet. Participating in a Clinical Trial: Fact Sheet Number 205.
August 7, 2006. Available at: www.aidsinfonet.org. Accessed December
2006.
¾ Center for Disease Control and Prevention. Frequently Asked Questions and
Answers About Co-infection with Hepatitis C Virus. November, 2006.
Available at: www.cdc.gov/hiv/resources/qa/print/HIVHCV_Coinfection.htm. Accessed December 2006.
¾ Maine Center for Disease Control and Prevention. Hepatitis Services. Maine:
ME CDC; 2007.
¾ Maine Center for Disease Control and Prevention. The AIDS Drug
Assistance Program Application. Available at:
www.maine.gov/dhhs/boh/ddc/ADAP_docs.htm. Accessed March 2008.
¾ Maine Center for Disease Control and Prevention. ADAP Brochure.
Available at: www.maine.gov/dhhs/boh/ddc/ADAP_docs.htm. Accessed
March 2008.
¾ Maine Center for Disease Control and Prevention. ADAP Covered
Medications. Available at:
www.maine.gov/dhhs/boh/ddc/ADAP_docs.htm. Accessed March 2008.
¾ Maine Center for Disease Control and Prevention. ADAP Record Release
Form. Available at: www.maine.gov/dhhs/boh/ddc/ADAP_docs.htm.
Accessed March 2008.
32
MEDICAL HEALTH: HIV TREATMENT CENTERS
You can help the patient make the appointment at one of these places:
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The Virology Treatment Center, 48 Gilman St., Portland, ME 04101. (207) 6622099. Hours M-F 8-4:30. Interpreters available through telephone language line.
They provide:
o HIV/AIDS treatment, psychiatric support, and nutrition services
o Services that work with primary care doctors in order to ensure the best
o HIV drug research trials for people living with HIV/AIDS
o Expert HIV care consultation
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Positive Health Care, 103 India St., Portland, ME 04101. (207) 874-8446. English
and Spanish spoken, other languages available.
www.portlandMaine.gov/dhhs/help.asp. They provide:
o Comprehensive Primary care services to people living with HIV/AIDS
o HIV/AIDS testing & treatment, psychiatric treatment, case management,
adherence counseling, risk reduction education, after hours call service
o Experienced staff including two HIV Specialists certified by the American
Academy of HIV Medicine, two nurses, a psychiatrist, and a case manager
o Connection to the City of Portland’s Health and Human Services Division
o HIV care that is linked to the Ryan White Care Act Title III program
funded by a grant from the HIV/AIDS Bureau, U.S. Health Resources and
Services Administration (HRSA)
ƒ
The Horizon Program, 150 Dresden Ave., Gardiner, ME 04345. (207) 621-5376
(John Thiele, Director). www.mainegeneral.org. They provide:
o Medical services (including HIV testing) and interaction with healthcare
professionals
o Case management for people living with HIV/AIDS
o HIV prevention and education services
o Counseling and support for people infected and affected by HIV/AIDS.
o The opportunity for patients to enroll in a needle exchange program
ƒ
Healthways/Regional Medical Center of Lubec, Lubec Health Clinic. 43 South
Lubec Rd. Lubec, ME 04652. (207) 733-1090 ext. 2226. Interpreters available
through telephone language line. They provide:
o HIV primary care (including testing), case management, substance abuse,
mental health and risk reduction counseling
33
For Veterans Only:
ƒ
Togus VA Medical Center, 1 VA Center, Augusta, ME 04330. Toll-free: (877) 4218263 or (207) 623-8411.
For Children, Teens and Young Adults:
ƒ
Maine Pediatric Specialty Group, 887 Congress St., Suite 320, Portland, ME. (207)
662-5522.
For HIV OB/GYN specialty care:
ƒ
Maine Medical Center, OB/GYN Associates, 887 Congress St, Suite 200, Portland,
ME. (207) 771-5549. Hours M-F 8-5 by appointment only. Interpreters available
through telephone language line.
34
MEDICAL HEALTH: MEDICATIONS
Do I need to be on anti-HIV medicines now?
You may or may not need to be on anti-HIV medicines now. When to start taking antiHIV medicines depends on your overall health, the amount of HIV virus in your blood
(viral load), and how well your immune system is working. You and your doctor will
determine the best time to start taking the medicines. Once you begin taking anti-HIV
medicines, you may need to continue taking them for the rest of your life.
HIV/AIDS Basics
What is HIV?
The Human Immunodeficiency Virus (HIV) is the virus that leads to AIDS. HIV belongs
to a subset of retroviruses called lentiviruses (or slow viruses), which means that there is
an interval -- sometimes years -- between the initial infection and the onset of symptoms.
Upon entering the bloodstream HIV infects the CD4+T cells and begins to replicate
rapidly.
Scientists believe that when the virus enters the body, HIV begins to disable the body's
immune system by using the body's aggressive immune responses to the virus to infect,
replicate and kill immune system cells. Gradual deterioration of immune function and
eventual destruction of lymphoid and immunologic organs is central to triggering the
immunosuppression that leads to AIDS.
What is AIDS?
Acquired Immunodeficiency Syndrome (AIDS) is the final stage of HIV infection. The
Centers for Disease Control establish the definition of AIDS, which occurs in HIVinfected persons with fewer than 200 CD4+T cells and/or persons with HIV who develop
certain opportunistic infections. In 1992, the CDC redefined AIDS to include 26 CDCdefined AIDS indicator illnesses and clinical conditions that affect persons with advanced
HIV.
Treatment Basics
What is the treatment for HIV or AIDS?
ƒ
Antiretroviral medicines. Because HIV is a retrovirus, the drugs used to treat it are
called antiretroviral medicines. These powerful medicines control the virus and slow
progression of HIV infection, but they do not cure it. These medicines must be taken
exactly as the doctor prescribes.
ƒ
HAART. The current recommended treatment for HIV is a combination of three or
more medicines. This regimen of medicines is called highly active antiretroviral
35
therapy (HAART). How many pills someone will need to take and how often to take
them will depend on which medicines the doctor chooses. Remember, each HAART
regimen is tailored to each individual patient. There is no one best regimen. You can
read more about specific HAART regimens at
www.aidsinfo.nih.gov/other/cbrochure/english/04_en.html. HAART may cause some
side effects. Patients and their doctors should discuss potential side effects so that
they will know if they occur. If they experience any side effects, even those that may
seem minor, they should talk about them with their doctor.
ƒ
Other medicines. The doctor may also prescribe other medicines, depending on your
CD4 cell count and medical needs. Side effects should always be discussed with a
doctor. Medicines and the way they are taken should never be changed without first
talking with a doctor. Medicines not taken the right way consistently, may not be as
effective as they should be.
ƒ
Treating other infections. If a patient’s HIV infection gets worse and the CD4 cell
count falls below 200, they are more likely to get other infections. Their doctor may
prescribe medicines to prevent particular infections, such as PCP. The most important
thing a client can do after they learn that they have HIV is to work closely with their
doctor. Because HIV and HIV-related illnesses vary from person to person, the doctor
will design a medical care plan specifically for that individual.
36
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 403
WHAT IS ANTIRETROVIRAL THERAPY (ART)?
WHAT IS ART?
ART means treating retroviral infections like
HIV with drugs. The drugs do not kill the
virus. However, they slow down the growth
of the virus. When the virus is slowed down,
so is HIV disease. Antiretroviral drugs are
referred to as ARV. ARV therapy is referred
to as ART.
WHAT IS THE HIV LIFE CYCLE?
There are several steps in the HIV life cycle.
(See Fact Sheet 400 for a diagram.)
1. Free virus circulates in the bloodstream.
2. HIV attaches to a cell.
3. HIV empties its contents into the cell
(infects the cell).
4. The HIV genetic code (RNA) is
changed into DNA by the reverse
transcriptase enzyme.
5. The HIV DNA is built into the infected
cell’s DNA by the integrase enzyme.
6. When the infected cell reproduces, it
activates the HIV DNA, which makes the
raw material for new HIV viruses.
7. Packets of material for a new virus
come together.
8. The immature virus pushes out of the
infected cell in a process called “budding.”
9. The immature virus breaks free of the
infected cell.
10. The new virus matures: raw materials
are cut by the protease enzyme and
assembled into a functioning virus.
APPROVED ARV DRUGS
Each type, or “class”, of ARV drugs attacks
HIV in a different way. The first class of
anti-HIV drugs was the nucleoside reverse
transcriptase inhibitors, also called
“nukes”. These drugs block Step 4, where
the HIV genetic material is converted from
RNA into DNA. The following drugs in this
class are used:
• AZT (ZDV, zidovudine, Retrovir®)
®
• ddI (didanosine, Videx )
• d4T (stavudine, Zerit®)
• 3TC (lamivudine, Epivir®)
• Abacavir (Ziagen®)
• Tenofovir (Viread®) (a nucleotide)
• Combivir® (AZT/3TC combination)
• Trizivir®
(AZT/3TC/Abacavir
combination)
• Emtricitabine (FTC, Emtriva®)
• Truvada (combination of Emtriva and
Viread)
• Epzicom (combination of abacavir and
3TC)
Another class of drugs blocks the same step
of the life cycle, but in a different way.
These are the non-nucleoside reverse
transcriptase inhibitors, or NNRTIs.
Three have been approved:
•
Nevirapine (NVP, Viramune®)
•
Delavirdine (DLV, Rescriptor®)
•
Efavirenz (EFV, Sustiva®).
The third class of ARV drugs is the
protease inhibitors. These drugs block
Step 10, where the raw material for new HIV
virus is cut into specific pieces.
Ten
protease inhibitors are approved:
•
Saquinavir
(SQV,
Invirase® and
Fortovase®)
•
Indinavir (IDV, Crixivan®)
•
Ritonavir (RTV, Norvir®)
•
Nelfinavir (NFV, Viracept®)
•
Amprenavir (APV, Agenerase®)
•
Lopinavir (LPV, Kaletra®)
•
Atazanavir (TAZ, Reyataz®)
•
Fosamprenavir (908, Lexiva®)
•
Tipranavir (PNU140690, Aptivus™)
•
Darunavir (TMC114, Prezista™)
The newest class of ARV drugs includes
fusion and attachment inhibitors. They
prevent HIV from attaching to a cell by
blocking Step 2 of the life cycle. One fusion
inhibitor has been approved:
•
Enfuvirtide (Fuzeon® or T-20)
HOW ARE THE DRUGS USED?
When HIV multiplies, most of the new
copies are mutations: they are slightly
different from the original virus.
Some
mutations keep multiplying even when you
are taking an ARV drug.
When this
happens, the drug will stop working. This is
called “developing resistance” to the drug.
If only one ARV drug is used, it is easy for
the virus to develop resistance. But if two
drugs are used, a successful mutant would
have to “get around” both drugs at the same
time. And if three drugs are used, it’s very
hard for a mutation to show up that can
resist all three drugs at the same time.
Using a triple-drug combination means that
it takes much longer for resistance to
develop. For this reason, using just one
ARV
drug
(monotherapy)
is
not
recommended.
CAN THESE DRUGS CURE AIDS?
A blood test called the “viral load” measures
the amount of HIV virus in your
bloodstream. People with lower viral loads
stay healthier longer. See Fact Sheet 125
for more information on the viral load test.
Some people’s viral load is so low that it is
“undetectable” by the viral load test. This
does not mean that all the virus is gone.
Researchers used to believe that ARV
therapy could eventually kill off all of the HIV
virus in the body. This is not true. The
drugs do not “cure” AIDS. However, they
make it possible for people with AIDS to live
a long time.
WHEN DO I START?
There is not a clear answer to this question.
Most doctors will consider three things: 1)
your viral load; 2) your CD4 cell count; and
3) any symptoms you’ve had. ARV therapy
is usually started if your viral load is over
100,000, if your CD4 cell count is below
350, or if you’ve had any symptoms of HIV
disease. See fact sheet 404 for more
information on treatment guidelines. This is
an important decision you should discuss
with your doctor.
WHICH DRUGS DO I USE?
Each ARV drug has side effects. Some are
serious. Refer to the fact sheet for each
individual drug.
Some combinations of
drugs are easier to tolerate than others, and
some seem to work better than others.
Each person is different, and you and your
doctor will have to decide which drugs to
use.
The viral load test is now being used to see
if ARV drugs are working. If the viral load
does not go down, or if it goes down but
comes back up, it might be time to change
ARV drugs.
WHAT’S NEXT?
New drugs are being developed in all four of
the existing classes. Researchers are also
trying to develop new types of drugs, such
as drugs that will block other steps in the
HIV live cycle, and drugs that will strengthen
the body’s immune defenses. See fact
sheets 460, 470 and 480 for more
information on newer classes of drugs.
Reviewed June 25, 2007
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 404
2006 ANTIRETROVIRAL THERAPY GUIDELINES
WHY DO THE GUIDELINES KEEP
CHANGING?
We keep learning more about the best way to
fight HIV. In 1998, the US Department of
Health and Human Services created a panel of
physicians, researchers, and consumers to
develop treatment guidelines. They constantly
review AIDS research results. The guidelines
are updated about once each year. The panel
released the latest guidelines in October 2006.
NOTE: These are guidelines, not rules.
Patients should receive individualized care
from a health care provider with experience
treating HIV infection. The full text of these
guidelines is available on the Internet at
http://www.aidsinfo.nih.gov/guidelines
VIRAL LOAD AND CD4 CELL
TESTING
Viral load and CD4 cell tests provide critical
information for decisions on antiretroviral
therapy (ART). Before changing treatment, the
tests should be repeated to confirm the results.
Fact Sheet 124 has more information on CD4
cell tests and Fact Sheet 125 covers viral load
testing.
Viral load should be tested:
• Before starting or changing medications.
This provides a reference value;
• About 2 to 8 weeks after starting or
changing medications. This shows whether
the new drugs are working;
• Every 3 or 4 months. This helps make sure
the medications are still working.
For
patients who haven’t started taking
medications, it helps decide when to start.
CD4 cell counts should be done:
• When someone first tests HIV-positive
• Every 3 to 6 months to monitor the strength
of the immune system
RESISTANCE TESTING
Viral resistance testing helps health care
providers choose the most effective drugs.
See Fact Sheet 126 for more information.
Resistance testing is recommended when viral
load is not controlled by new medications, or
when it “breaks through” a regimen that used
to work.
The guidelines recommend
resistance testing before starting antiretroviral
treatment (ART.) It can also make sense for
people who don’t need to start ART yet. This
can show if the person got infected with drugresistant virus.
WHEN TO START TREATMENT
Patients with symptoms of HIV disease or
with less than 200 CD4 cells should be
treated.
Patients with no symptoms who have less
than 350 CD4 cells OR viral load over
100,000 should be offered treatment. Consider
the risk of disease progression and the
patient’s willingness to start therapy. Some
experts would delay treatment for patients with
200 to 350 CD4 cells and viral loads under
100,000.
Patients with no symptoms, more than 350
CD4 cells AND a viral load below 100,000 do
not need to start treatment. They should get
regular viral load and CD4 tests. However,
some experts would treat these patients.
GOALS OF THERAPY
The guidelines list the following goals for HIV
therapy:
• Reduce viral load as much as possible for
as long as possible
• Restore or preserve the immune system
• Improve the patient’s quality of life
• Reduce sickness and death due to HIV
The following tools are suggested to help
achieve these goals:
• Maximize adherence. Help the patient take
medications correctly.
• Think about future regimens when choosing
drugs. Keep future options open
• Use resistance testing when it will help.
WHAT DRUGS SHOULD BE USED
FIRST?
The guidelines list several preferred regimens
for people starting anti-HIV treatment. They
include efavirenz (Sustiva), or atazanavir
(Reyataz), fosamprenavir (Lexiva), or lopinavir
(Kaletra), each boosted with ritonavir, plus
Truvada or Combivir (each of which contains
two nucleoside analog drugs in a single pill).
Many other combinations are listed as
“alternative regimens.”
They include
nevirapine (Viramune), Kaletra, fosamprenavir
boosted or unboosted, or atazanavir
unboosted, together with Truvada, Combivir, or
Epzicom (abacavir plus lamivudine in a single
pill. Other combinations are listed for use only
when a preferred or alternative NNRTI- or PIcontaining regiment cannot or should not be
used.
Several drugs or combinations are listed as
“Not
Recommended.”
Some
are
not
recommended for initial therapy due to low
anti-HIV activity or inconvenience. Others are
not recommended at any time. These include
any nuke or non-nuke by itself (monotherapy)
or just two nukes because these treatments
generally have only limited benefits for a short
period of time. Also, the guidelines recommend
not using the triple-nuke regimens except for
Trizivir (abacavir + zidovudine + lamivudine) or
possibly tenofovir + Combivir (zidovudine +
lamivudine).
There are special considerations for the
treatment of pregnant women, adolescents,
drug users, people also infected with hepatitis
B or C or with tuberculosis.
INTERRUPTING TREATMENT
A patient may need to interrupt treatment for
several reasons: side effects are intolerable,
there's a drug interaction, if they run out of any
of their medications, or if they have surgery
scheduled, Women might choose to stop
treatment during the first 3 months of
pregnancy. Treatment interruptions are not
recommended in response to treatment failure.
ART should only be stopped if your health care
provider recommends it. Two large studies
showed that people who interrupted treatment
had a higher rate of HIV-related health
problems or death. For more information see
fact sheet 406, Treatment Interruptions.
WHEN TO CHANGE
Treatment should be changed due to treatment
failure, or intolerance of current drugs.
Treatment failure: Within 6 months after
starting a treatment, the viral load should drop
below 400 copies. Within 1 year, it should be
less than 50 copies. If the viral load does not
drop this much, change the treatment.
Other signs of treatment failure include:
• An increase in viral load from undetectable
to detectable levels
• Failure to increase CD4 cells by 25 to 50
during the first year; or
• A new AIDS-related illness.
Intolerance: If a patient cannot take the
prescribed drugs because of their side effects
or interactions with other needed medications,
the drugs should be changed.
WHAT TO CHANGE TO?
Decisions to change ART should include a
review of prior treatments, physical exam,
resistance testing, adherence and side effects.
Ideally, three drugs that the virus will respond
to can be identified and used in a new
regimen.
If there are few options for change, and viral
load was reduced, it may make sense not to
change medications. Another option is to use
combinations that are more experimental.
Treatment interruptions are not recommended.
Revised October 10, 2006
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
MEDICAL HEALTH: CLINICAL TRIALS
Clinical trials can be a good option for those who are interested and medically qualify.
They often cover medications and medical monitoring in full. Contact:
ƒ
Maine Virology Treatment Center, 48 Gilman St., Portland, ME 04101. (207) 6622099. Hours M-F 8-4.:30. Phone interpreters available.
39
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 205
PARTICIPATING IN A CLINICAL TRIAL
WHAT IS AN AIDS CLINICAL
TRIAL?
Before new drugs can be sold to treat
HIV disease, they must be proved to be
safe and effective. The Food and Drug
Administration (FDA) approves new
drugs and other treatments based on
the results of laboratory tests, animal
tests, and tests in humans (clinical
trials).
New treatments are tested in humans
only if there were good results from
laboratory tests and animal studies. In
the first clinical trials, the treatment is
tested for safety in a small group of
people. Later trials with many more
participants test how well the treatment
works. InfoNet Fact Sheet 105, How
HIV Drugs Get Approved, has more
information on the phases of clinical
trials.
many clinical trials. Others may not
offer any. Some trials will reimburse
your travel costs to a study center.
WHAT ARE THE BENEFITS OF
PARTICIPATING?
•
•
•
•
WHAT ARE THE RISKS?
•
A clinical trial is a carefully planned
medical experiment. The guidelines for
a clinical trial are called a protocol. The
protocol is a document that describes
exactly how the trial will be carried out.
WHO CAN PARTICIPATE IN A
CLINICAL TRIAL?
The protocol explains the rules for
participation in a clinical trial. Each trial
is different. For example, some trials
require certain viral loads or CD4 cell
counts.
You normally cannot participate in a
clinical trial if you have any
opportunistic infections, or are using
any treatments that might make it
difficult to measure how well the test
treatment is working. You also cannot
participate if the study treatment might
harm you. For example, women
sometimes cannot participate in trials
during the first three months of
pregnancy, because of the risk of birth
defects for their newborn child.
Trials are carried out at different
hospitals and clinics throughout the
world. Some hospitals participate in
You could get a new treatment
before it is available by prescription.
Your health will be watched very
carefully.
You might get some or all of your
medications paid for. You might
also get some lab tests or other
care for free.
You will be helping others by
contributing information about new
treatments.
•
•
•
•
In trials, new treatments are
compared to the best available
medication or to a dummy
medication (a “placebo”). You
might not get the new treatment.
Patients and health care providers
in these trials are not told who is
getting the new treatment.
You might have to stop taking other
medications during the trial.
Study treatments might not work.
Study treatments might have
serious side effects.
Participating in a study might take a
lot of time. It could require special
record-keeping or many trips to the
study location.
There are also local and national
boards that review and monitor each
clinical trial before it starts and while it
is in progress. Trials can be stopped
early if they are harming participants.
You can decide to drop out of a clinical
trial at any time, for any reason.
SHOULD I PARTICIPATE?
You and your health care provider
should discuss the possible benefits
and risks of taking part in a clinical trial.
Here are some of the questions you
should consider:
• What is the purpose of the study?
• How long will it last?
• Where is it being conducted?
• How will I take the medication (pills,
shots, intravenous infusion, other)?
• What else do I have to do (records
to keep, office visits, etc.)?
• What will I have to pay for?
• Can I be reimbursed for travel
expenses?
• Is childcare available?
• Will I be able to stay on the study
treatment after the trial is over?
Who will pay for it?
• What was learned in previous
studies of this treatment?
• Will I have to stop any drugs or
other treatments I am now using?
• Will taking part in this study exclude
me from other clinical trials?
TO FIND OUT MORE ABOUT
CLINICAL TRIALS:
HOW ARE PARTICIPANTS
PROTECTED?
There are strict laws on research using
human participants. The main tool to
protect you is called “Informed
Consent.” You will be given a full,
written description of the clinical trial to
read and sign before you agree to
participate. Take your time to review the
Informed Consent before you sign it. If
you need an interpreter to help you
understand it, ask for one. If you have
questions, be sure you get the answers
before you sign.
For information about participating in
clinical trials or trials availability
throughout the US, call the AIDSinfo
Service at 1-800-448-0440 or visit their
Internet
web
site
at
http://aidsinfo.nih.gov
The FDA website has information on
the drug development process at
http://www.fda.gov/cder/handbook/dev_
rev.htm
Revised August 7, 2006
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
This Fact Sheet is sponsored by the US Food and Drug Administration (FDA)
MEDICAL HEALTH: HIV & HEPATITIS
Are there any other things I need to get tested for, like Hepatitis?
It’s important for people who test positive for HIV to be tested and/or vaccinated for
Hepatitis. Testing and vaccinations are provided at many locations across the state.
Please ask your health care provider for more information on where to go for Hepatitis
testing and vaccines or visit www.maine.gov/dhhs/boh/ddc/viral_hepatitis.htm or call
(207) 287-3747 for a complete list of sites. It is also recommended for people who test
positive for HIV to be tested for tuberculosis and STD’s, such as syphilis, gonorrhea and
chlamydia.
According to the Center for Disease Control, about one quarter of HIV-infected persons
in the United States are also infected with hepatitis C virus (HCV). HCV and also the
hepatitis B virus (HBV) are among the most important causes of chronic liver disease in
the United States and HCV/HBV infection progresses more rapidly to liver damage in
HIV-infected persons. HCV/HBV infection may also impact the course and management
of HIV infection. In Maine, the following centers offer treatment specifically for
HIV/HCV/HBV Co-Infection:
ƒ
Maine Virology Treatment Center, 48 Gilman St., Portland, ME 04101. (207)
662-2099. Hours M-F 8-4:30. Phone interpreters available.
* More general Hepatitis Services listed on following page.
41
.
State of Maine
Hepatitis Services
12-19-2007 revised
PLACES WHERE PEOPLE AT RISK CAN RECEIVE HEPATITIS
SERVICES. SEE EACH COUNTY FOR SPECIFIC SERVICES
AVAILABLE. PLEASE CALL FIRST FOR AN APPOINTMENT.
Cumberland
Androscoggin
Lewiston STD Clinic (formerly Auburn STD)
179 Lisbon St.
P.O. Box 1038
Lewiston, ME 04243-1038
Ph: 207-795-4019, 1-800-587-9354
ƒ Free hepatitis C testing
Aroostook
HEALTH 1st—Presque Isle
169 Academy St.
Presque Isle, Maine 04769
Ph: 207-768-3062
ƒ Free hepatitis C testing
HEALTH 1st—Fort Kent
486 Frenchville Rd.
Fort Kent, Maine 04743
Ph: 207-834-3513
ƒ Free hepatitis C testing
HEALTH 1st--Houlton
91 Military St., Suite B
Houlton, ME 04730
Ph: 207-532-5303
ƒ Free hepatitis C testing
City of Portland, Public Health
Division
HIV/STD Clinic
103 India St.
Portland, ME 04101
Ph: 207-874-8446
ƒ Free hepatitis C testing
ƒ Free hepatitis A and B vaccine
Discovery House
400 Western Ave.
South Portland, ME 04106
Ph: 207-774-7111
ƒ Free hepatitis C testing
(Testing available only for clients of Discovery
House)
Franklin
No State funded testing sites currently
Hancock
No State funded testing sites currently
Kennebec
Health Reach Network--Augusta (Formerly
Dayspring)
9 Green St.
Augusta, ME 04330
Ph: 207-621-3785
ƒ Free hepatitis C testing
.
Knox
Rockland Family Planning
P.O. Box 866
22 White St., Suite 101
Rockland, ME 04841
Ph: 207-594-3114
ƒ Free hepatitis C testing
Physical Location:
Cleveland House
4 Bowdoin Mill Island, Suite 101
Topsham, ME 04086
Ph: 207-725-8264
ƒ Free hepatitis C testing
Somerset
Lincoln
Damariscotta Family Planning
P.O. Box 610
767 Main St., Route 1B
Damariscotta, ME 04543
Ph: 207-563-1224
ƒ Free hepatitis C testing
Oxford
No State funded testing site currently
Penobscot
Bangor STD Clinic
103 Texas Ave.
Bangor, ME 04401
Ph: 207-947-0700
ƒ Free hepatitis C testing
ƒ *Free shot #1 for hepatitis A and B vaccine
(see below for #2, 3)
*$5 administrative fee
Bangor Immunization Clinic
103 Texas Ave.
Bangor, ME 04401
Ph: 207-207-941-0259x407
ƒ *Free shots #2 for hepatitis A and #2 and
#3 for hepatitis B vaccine
*$5 administrative fee
Piscataquis
No State funded testing sites currently
Sagadahoc
Planned Parenthood of Northern New England
(PPNNE) Brunswick-Topsham
Mailing address:
P.O. Box 234
Brunswick, ME 04011
No State funded testing sites currently
Waldo
Belfast Family Planning
Wentworth Building
P.O. Box 18
147 Waldo Ave. Suite 105
Belfast, ME 04915
Ph: 207-338-3736
ƒ Free hepatitis C testing
Washington
Discovery House
12 Beech St.
Calais, ME 04619
Ph: 207-454-1300
ƒ Free hepatitis C testing
(Testing available only for clients of Discovery
House)
Regional Medical Center at Lubec
Healthways
43 South Lubec Road
Lubec, ME 04652
Ph: 207-733-5541
ƒ Free hepatitis C testing
York
York County Community Health Care.
(formerly known as Spruce St. Health Center)
P.O. Box 72
32 Patriot Ln
Sanford, ME 04073
Phone: 207-490-6900
ƒ Free hepatitis C testing
HIV
Prevention
Frequently Asked Questions and
Answers About Coinfection with
HIV and Hepatitis C Virus
Question: Why should HIV-infected persons be
concerned about coinfection with HCV?
Answer:
About one quarter of HIV-infected persons in the United States
are also infected with hepatitis C virus (HCV). HCV is one of the
most important causes of chronic liver disease in the United States
and HCV infection progresses more rapidly to liver damage in
HIV-infected persons. HCV infection may also impact the course
and management of HIV infection.
The latest U.S. Public Health Service/Infectious Diseases Society
of America (USPHS/IDSA) guidelines recommend that all
HIV-infected persons should be screened for HCV infection.
Prevention of HCV infection for those not already infected and
reducing chronic liver disease in those who are infected are
important concerns for HIV-infected individuals and their health
care providers.
Question: Who is likely to have HIV-HCV coinfection?
Answer:
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The hepatitis C virus (HCV) is transmitted primarily by large or
repeated direct percutaneous (i.e., passage through the skin by
puncture) exposures to contaminated blood. Therefore,
coinfection with HIV and HCV is common (50%-90%) among
HIV-infected injection drug users (IDUs). Coinfection is also
common among persons with hemophilia who received clotting
factor concentrates before concentrates were effectively treated to
inactivate both viruses (i.e., products made before 1987). The
risk for acquiring infection through perinatal or sexual exposures is
much lower for HCV than for HIV. For persons infected with HIV
through sexual exposure (e.g., male-to-male sexual activity),
coinfection with HCV is no more common than among similarly
aged adults in the general population (3%-5%).
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HIV-HCV Coinfection Q’s & A’s, January 2002
Question: What are the effects of coinfection on disease progression of HCV
and HIV?
Answer:
Chronic HCV infection develops in 75%-85% of infected persons and leads to chronic liver
disease in 70% of these chronically infected persons. HIV-HCV coinfection has
been associated with higher titers of HCV, more rapid progression to HCV-related liver
disease, and an increased risk for HCV-related cirrhosis (scarring) of the liver. Because of this,
HCV infection has been viewed as an opportunistic infection in HIV-infected persons and was
included in the 1999 USPHS/IDSA Guidelines for the Prevention of Opportunistic
Infections in Persons Infected with Human Immunodeficiency Virus. It is not, however,
considered an AIDS-defining illness. As highly active antiretroviral therapy (HAART) and
prophylaxis of opportunistic infections increase the life span of persons living with HIV,
HCV-related liver disease has become a major cause of hospital admissions and deaths among
HIV-infected persons.
The effects of HCV coinfection on HIV disease progression are less certain. Some studies
have suggested that infection with certain HCV genotypes is associated with more rapid
progression to AIDS or death. However, the subject remains controversial. Since coinfected
patients are living longer on HAART, more data are needed to determine if HCV infection
influences the long-term natural history of HIV infection.
Question: How can coinfection with HCV be prevented?
Answer:
Persons living with HIV who are not already coinfected with HCV can adopt measures to
prevent acquiring HCV. Such measures will also reduce the chance of transmitting their HIV
infection to others.
Not injecting or stopping injection drug use would eliminate the chief route of HCV
transmission; substance-abuse treatment and relapse-prevention programs should be
recommended. If patients continue to inject, they should be counseled about safer injection
practices; that is, to use new, sterile syringes every time they inject drugs and never reuse or
share syringes, needles, water, or drug preparation equipment.
Toothbrushes, razors, and other personal care items that might be contaminated with blood
should not be shared. Although there are no data from the United States indicating that tattooing
and body piercing place persons at increased risk for HCV infection, these procedures may be
a source for infection with any bloodborne pathogen if proper infection control practices are not
followed.
Although consistent data are lacking regarding the extent to which sexual activity contributes
to HCV transmission, persons having multiple sex partners are at risk for other sexually
transmitted diseases (STDs) as well as for transmitting HIV to others. They should be
counseled accordingly.
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HIV-HCV Coinfection Q’s & A’s, January 2002
Question: How should patients coinfected with HIV and HCV be managed?
Answer:
General guidelines
Patients coinfected with HIV and HCV should be encouraged to adopt safe behaviors
(as described in the previous section) to prevent transmission of HIV and HCV to others.
Individuals with evidence of HCV infection should be given information about prevention of
liver damage, undergo evaluation for chronic liver disease and, if indicated, be considered for
treatment. Persons coinfected with HIV and HCV should be advised not to drink excessive
amounts of alcohol. Avoiding alcohol altogether might be wise because the effects of even
moderate or low amounts of alcohol (e.g., 12 oz. of beer, 5 oz. of wine or 1.5 oz. hard liquor
per day) on disease progression are unknown. When appropriate, referral should be made to
alcohol treatment and relapse-prevention programs. Because of possible effects on the liver,
HCV-infected patients should consult with their health care professional before taking any new
medicines, including over-the-counter, alternative or herbal medicines.
Susceptible coinfected patients should receive hepatitis A vaccine because the risk for
fulminant hepatitis associated with hepatitis A is increased in persons with chronic liver disease.
Susceptible patients should receive hepatitis B vaccine because most HIV-infected persons
are at risk for HBV infection. The vaccines appear safe for these patients and more than
two-thirds of those vaccinated develop antibody responses. Prevaccination screening for
antibodies against hepatitis Aand hepatitis B in this high-prevalence population is generally
cost-effective. Postvaccination testing for hepatitis A is not recommended, but testing for
antibody to hepatitis B surface antigen (anti-HBs) should be performed 1-2 months after
completion of the primary series of hepatitis B vaccine. Persons who fail to respond should be
revaccinated with up to three additional doses.
HAART has no significant effect on HCV. However, coinfected persons may be at increased
risk for HAART-associated liver toxicity and should be closely monitored during antiretroviral
therapy. Data suggest that the majority of these persons do not appear to develop significant
and/or symptomatic hepatitis after initiation of antiretroviral therapy.
Treatment for HCV Infection
A Consensus Development Conference Panel convened by The National Institutes of Health
in 1997 recommended antiviral therapy for patients with chronic hepatitis C who are at the
greatest risk for progression to cirrhosis. These persons include anti-HCV positive patients
with persistently elevated liver enzymes, detectable HCV RNA, and a liver biopsy that indicates
either portal or bridging fibrosis or at least moderate degrees of inflammation and necrosis.
Patients with less severe histological disease should be managed on an individual basis.
In the United States, two different regimens have been approved as therapy for chronic
hepatitis C: monotherapy with alpha interferon and combination therapy with alpha interferon
and ribavirin. Among HIV-negative persons with chronic hepatitis C, combination therapy
consistently yields higher rates (30%-40%) of sustained response than monotherapy
(10%-20%). Combination therapy is more effective against viral genotypes 2 and 3, and
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HIV-HCV Coinfection Q’s & A’s, January 2002
requires a shorter course of treatment; however, viral genotype 1 is the most common among
U.S. patients. Combination therapy is associated with more side effects than monotherapy,
but, in most situations, it is preferable. At present, interferon monotherapy is reserved for
patients who have contraindications to the use of ribavirin.
Studies thus far, although not extensive, have indicated that response rates in HIV-infected
patients to alpha interferon monotherapy for HCV were lower than in non-HIV-infected
patients, but the differences were not statistically significant. Monotherapy appears to be
reasonably well tolerated in coinfected patients. There are no published articles on the longterm effect of combination therapy in coinfected patients, but studies currently underway
suggest it is superior to monotherapy. However, the side effects of combination therapy are
greater in coinfected patients. Thus, combination therapy should be used with caution until
more data are available.
The decision to treat people coinfected with HIV and HCV must also take into consideration
their concurrent medications and medical conditions. If CD4 counts are normal or minimally
abnormal (> 400/�l), there is little difference in treatment success rates between those who are
coinfected and those who are infected with HCV alone.
Other Treatment Considerations
Persons with chronic hepatitis C who continue to abuse alcohol are at risk for ongoing liver
injury, and antiviral therapy may be ineffective. Therefore, strict abstinence from alcohol is
recommended during antiviral therapy, and interferon should be given with caution to a patient
who has only recently stopped alcohol abuse. Typically, a 6-month abstinence is recommended
for alcohol abusers before starting therapy; such patients should be treated with the support and
collaboration of alcohol abuse treatment programs.
Although there is limited experience with antiviral treatment for chronic hepatitis C of persons
who are recovering from long-term injection drug use, there are concerns that interferon therapy
could be associated with relapse into drug use, both because of its side effects and because it
is administered by injection. There is even less experience with treatment of persons who are
active injection drug users, and an additional concern for this group is the risk for reinfection
with HCV. Although a 6-month abstinence before starting therapy also has been recommended
for injection drug users, additional research is needed on the benefits and drawbacks of treating
these patients. Regardless, when patients with past or continuing problems of substance abuse
are being considered for treatment, such patients should be treated only in collaboration with
substance abuse specialists or counselors. Patients can be successfully treated while on
methadone maintenance treatment of addiction.
Because many coinfected patients have conditions or factors (such as major depression or
active illicit drug or alcohol use) that may prevent or complicate antiviral therapy, treatment for
chronic hepatitis C in HIV-infected patients should be coordinated by health care providers with
experience in treating coinfected patients or in clinical trials. It is not known if maintenance
therapy is needed after successful therapy, but patients should be counseled to avoid injection
drug use and other behaviors that could lead to reinfection with HCV and should continue to
abstain from alcohol.
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HIV-HCV Coinfection Q’s & A’s, January 2002
Infections in Infants and Children
The average rate of HCV infection among infants born to women coinfected with HCV and
HIV is 14% to 17%, higher than among infants born to women infected with HCV alone. Data
are limited on the natural history of HCV infection in children, and antiviral drugs for chronic
hepatitis C are not FDA-approved for use in children under aged 18 years. Therefore, children
should be referred to a pediatric hepatologist or similar specialist for management and for
determination for eligibility in clinical trials.
Question: What research is needed on HIV-HCV coinfection?
Answer:
Many important questions remain about HIV-HCV coinfection:
♦
♦
♦
♦
♦
By what mechanism does HIV infection affect the natural history of hepatitis C?
Does HAART affect the impact of HIV on the natural history of HCV infection?
Does HCV affect the natural history of HIV and, if so, by what mechanism?
How can we effectively and safely treat chronic hepatitis C in HIV-infected patients?
How can we distinguish between liver toxicity caused by antiretrovirals and that caused
by HCV infection?
♦ What is the best protocol for treating both HIV and chronic hepatitis C in the coinfected
patient?
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HIV-HCV Coinfection Q’s & A’s, January 2002
The following sources may also be helpful in understanding HCV and
HCV-HIV coinfection:
Publications
1. Centers for Disease Control and Prevention. Recommendations for prevention and control of hepatitis
C virus (HCV) infection and HCV-related chronic disease. MMWR 1998;47(No. RR-19):1-39.
Available on the Internet at: ftp://ftp.cdc.gov/pub/Publications/mmwr/rr/rr4719.pdf
2. Centers for Disease Control and Prevention. 1999 USPHS/IDSA guidelines for the prevention of
opportunistic infections in persons infected with human immunodeficiency virus: U.S. Public Health
Service (USPHS) and Infectious Diseases Society of America (IDSA). MMWR 1999;48(No. RR10):32-4. Available on the Internet at: www.cdc.gov/epo/mmwr/preview/mmwrhtml/rr4810a1.htm
3. National Institutes of Health. Chronic hepatitis C: current disease management (NIH Publication No.
00-4230). DHHS, 1999. (See web version below).
4. Sulkowski MS, Mast EE, Seeff LB, Thomas DL. Hepatitis C virus infection as an opportunistic disease
in persons infected with human immunodeficiency virus. Clinical Infectious Diseases 2000 Apr;30
Supplement 1:S77-S84.
Internet Resources
1. Division of HIV/AIDS Prevention, CDC: www.cdc.gov/hiv
2. Division of Viral Hepatitis, CDC: www.cdc.gov/hepatitis
3. National Institutes of Health: www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm
4. CDC National Prevention Information Network: www.cdcnpin.org
5. Expert Perspectives: Strategies for the Management of HIV/HCV Coinfection:*
www.projectsinknowledge.com/hiv-hcv/index.html
*Disclaimer: This is a non-government source. The Centers for Disease Control and Prevention does not assume responsibility for
information presented at this site.
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HIV-HCV Coinfection Q’s & A’s, January 2002
MEDICAL HEALTH:
HEALTH INSURANCE & FINANCIAL SUPPORT
I hear that HIV care and medicines are expensive, and I don’t have
health insurance. Does that mean I cannot get the care I will need to
stay healthy?
HIV care and treatment are expensive and are necessary to staying healthy. But there are
services to help people who don’t have insurance. There are ways to get free or low-cost
care. Here are some options:
ƒ Financial Advocates for Patients: Hospitals have financial advocates—people who
can help you explore your payment options. If you do not have any insurance, they
can help you apply for state assistance (Medicaid or the MaineCare benefit for people
living with HIV/AIDS). If you don’t qualify for any of those, most hospitals offer
financial assistance based on income.
ƒ AIDS Drug Assistance Program (ADAP): This program helps to cover the cost of
HIV medicines if you are uninsured or underinsured. To find out if you qualify,
contact the state of Maine ADAP Program at (207) 287-3747. Interpreters available.
ƒ Clinical Trials: Clinical trials are health research studies. They are an option for
people who are interested and who medically qualify. These studies often pay for
HIV medicines and HIV medical care in full. Ask your doctor about this option.
ƒ There is dental assistance for those living with HIV. Contact: The Penobscot
Community Dental Center, 1012 Union St., Bangor, ME 04401. (207) 945-5247.
Contact your case-management agency or medical provider and they may be able to
help you access dental assistance.
More for Providers on the Maine AIDS Drug Assistance Program
(ADAP):
The AIDS Drug Assistance Program (ADAP) helps people living with HIV get the
HIV/AIDS drugs they need. Funded through the Maine Department of Health and
Human Services, this program covers the costs of HIV drugs for low-income people who
have limited or no coverage from private insurance or Medicaid. To apply for ADAP
program, a client must complete an application and fax it to the Department of Health and
Human Services with the help of their health care provider. The staff at Department of
Health and Human Services will determine the client eligibility for the program and
contact their pharmacy to enroll them into the program. For most people, enrollment into
ADAP takes less than 48 hours. You can contact the state of Maine ADAP Program at
(207) 287-3747, www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm.
50
Maine Department of Health and Human Services
HIV/AIDS Drug Assistance Program
Section 1: About You
Name: (Please Print)
Social Security Number
_______________________________________________________________
(Last)
(First)
(Middle Initial)
_______- ________ - _______
Are you a Maine
Resident?
Birth Date __ __/ __ __/__ __ __ __
Mailing
Address: _______________________________________
Yes
No
_______________________________________
Gender:
City:_______________ State: _______ Zip: _________
Male
Female
Transgender
Other_______
Race: (Select all that apply)
African American
Asian
Caucasian (White)
Pacific Islander/
Native Hawaiian
Native American
Other __________
Ethnicity: (Please select one)
Hispanic/Latino
Non Hispanic/Latino
Daytime phone: (____)________________
May we leave a message at this number?
Yes
No
Nighttime phone: (____)________________
May we leave a message at this number?
Yes
No
Section 2: Your Income and Family Size
Family Size:_______ (You, spouse &/or those you support)
Total (pre-tax) monthly income is: $________________
Please list your income for each month:
Salaries/Wages (Gross) $_____________________
Other (list) $_________________________________
SSI (Blue Check) $__________________________
Other (list) $_________________________________
SSDI (Gold Check) $________________________
Other (list) $_________________________________
Unemployment $___________________________
Other (list) $_________________________________
Section 3: Your Health Insurance
1. Do you have MaineCare/Medicaid?
If No: Have you applied for MaineCare?
2. Do you have Medicare?
Do you have a Part D drug plan?
Yes
No
MaineCare #:_____________________
Yes
No
Date:____________________________
Yes
No
Medicare #:_______________________
Yes
No
If Yes: Plan Name ___________________________ Policy Number?________________________________
3. Do you have Private Insurance or HMO?
Yes
If Yes: Plan Name ___________________________
No or
COBRA Insurance ?
Yes
No
Policy Number?________________________________
Section 4: Your Care Team
_____________________________________________
Doctor/Nurse Practitioner’s Name
(________)_________________________
Phone Number
_____________________________________________
HIV Case Manager’s Name
(________)_________________________
Phone Number
_____________________________________________
Other Support (who?)
(________)_________________________
Phone Number
____________________________________________
Other Support (who?)
(________)_________________________
Phone Number
Section 5: Your Medical Information
Fill This Out With Your Doctor or Nurse Practitioner or Case Manager
HIV Status:
Latest Test Results (Please update with recent labs):
Client has HIV (but not AIDS)
HIV +, AIDS Status unknown
CDC Defined AIDS
Test Date:______________ Absolute CD4 number:________________
Test Date: ______________ Viral Load: ________________________
___________________________________________________________
Provider First Name
Last Name
MD/DO/NP/PA /LCSW
(_________)__________________
Phone Number
______________________________________________________________________________________________
Address: Street
City
State
Zip
_________________________________
Signature
_____/_______/_________
Date
Section 6: Your Signature
By signing below, I certify that all information is true and complete.
_________________________________________
Your Signature
_________________________________
Today’s Date
Please mail this Application with the Release of Information to:
Lynn Berry - Maine CDC
286 Water Street, 9th Floor Key Plaza
11 State House Station
Augusta, ME 04333-0011
Phone for Assistance: 287-2899
Fax: 287-3498
For DHHS Use Only:
Date Authorized:_________________________
Date Application Received:____________________________
Authorizing Signature:_______________________________
Maine HIV/AIDS Case
Management Agencies:
City of Portland
Positive Health Care
874-8791
103 India Street
Portland, ME 04101
Horizon
621-3785
9 Green Street
Augusta, ME 04330
Down East AIDS Network
667-3506
25A Pine Street
Ellsworth, ME 04605
ADAP Program
Contacts:
Lynn Berry—ADAP Client Benefits Manager
General ADAP Information, Enrollment
207-287-2899
[email protected]
Amy Nunan—ADAP Specialist
Co-pay reimbursement, private health insurance
questions
207-287-5551
[email protected]
Gen Meredith—Ryan White Part B Coordinator
Program Oversight
207-287-4846
[email protected]
Eastern Maine AIDS Network
990-3626
370 Harlow Street
Bangor, ME 04401
Need Help Paying for
Your HIV Meds and
Insurance Premiums?
Frannie Peabody Center
774-6877
335 Valley Street
Portland, ME 04102
We Can Help!
St Mary’s Regional Medical Center
777-8507
Campus Ave
Lewiston, ME 04243
Tel: 207-287-2899
11 State House Station
Augusta, ME 04333-0011
All information submitted to the ADAP
Program will be kept strictly confidential.
Maine
AIDS Drug
Assistance Program
Phone: 207-287-2899
Fax: 207-287-3498
E-mail:[email protected]
Am I Eligible?
You Can Get ADAP Help if:
•
You live in Maine
•
You have an HIV infection
•
You Earn less than $4,255 per
month for a family of one
You have applied for all other
possible health insurance plans
(MaineCare and Medicare)
•
What Happens
W h e n I Jo in ?
You will receive a letter of approval
and an ADAP membership card.
You take this to the pharmacy, and get
help with you HIV prescriptions.
ADAP coverage happens right at the
pharmacy.
2) Send the signed Application to the
ADAP office. You can get help
within one day!
Get an ADAP application:
•
At your doctor’s office,
•
At a case management agency
•
By calling ADAP at 287-2899
•
www.mainepublichealth.gov
HIV Care Section
ADAP works with Medicare and
other insurance plans. Having ADAP
and other insurance can save you
money.
Will ADAP Help With
My Insurance Premiums?
ADAP will pay your MaineCare and
Medicare part D premiums. The
ADAP may pay your private
insurance monthly premiums. Call us
to see if you are eligible.
H ow D o I A p p l y ?
1) Fill out the ADAP Application.
You need to do this with your doctor,
nurse practitioner, or case manager.
What if I Have Medicare
or Other Insurance?
What Medications Are
Covered?
ADAP pays for all HIV antiretroviral
medications that are FDA approved.
ADAP also pays for medications to
treat chronic conditions including high
blood pressure, diabetes, high cholesterol, and mental illness.
Your doctor will tell you what
medications are needed for your health.
What If I Have
No Insurance?
If you have no insurance, the ADAP
will work with your case manager to
help you find health care coverage.
While looking for coverage the
ADAP will pay the full cost of your
HIV meds.
ADAP Covered Medications
ADAP Covers medications to treat:
HIV
Mental Illness
High Blood Pressure
High Cholesterol
Hepatitis
Diabetes including testing strips and syringes
Thyroid disease
Heartburn, nausea, diarrhea and other intestinal upsets
We also cover
Antibiotics and Anti-fungals
Contraceptives
Vitamins (with a prescription only)
Estrogen
Vaccines
For a complete list of medications covered please go to our website
http://www.maine.gov/dhhs/boh/ddc/hiv_care.htm
You can also contact your Case Manager or call the ADAP office at 287-5551
Maine Department of Health and Human Services
Maine Center for Disease Control and Prevention
(Formerly Bureau of Health)
286 Water Street
11 State House Station
Augusta, ME 04333-0011
John Elias Baldacci
Governor
AIDS Drug Assistance Program (ADAP)
Brenda M. Harvey
Commissioner
Dora Anne Mills, MD, MPH
Public Health Director
Maine CDC Director
Release of Information
I, _______________________________________, allow the Maine ADAP** to get and share my
(Your Name)
name and health information. Because I get HIV services, some of my medical and eligibility
information needs to be shared. I understand that this information will only be used to sign me up for
the ADAP, and to make sure I get the best services from ADAP.
I allow the Maine ADAP Program speak with, or share information with:
X
My Doctor or Nurse Practitioner
(their name) ____________________________________
X
My Case Manager
(their name) ____________________________________
X
My Pharmacy
(which one) ____________________________________
X
My Insurance Company
(their name) ____________________________________
X
MaineCare (Medicaid) and the eligibility office
X
GHS Data Management - the company that helps pay for your medications
X
Centers for Medicare and Medicaid Services (CMS) – to learn about your Medicare or MaineCare
X
Medical Care Development – the company that reimburses you for prescription co-pays
My Spouse/Domestic Partner/Family Member/Other: (please list)
__ [Name:______________________; Relationship:_______________________; Phone:_______________ ]
__ [Name:______________________; Relationship:_______________________; Phone:_______________ ]
I understand that my information will only be shared if it is needed for me to get services.
Your Signature________________________________________ Today’s Date____________
Read this: This permission will end one (1) year from today. You can end this permission sooner by
writing to the ADAP office. If you do not sign this permission, the ADAP may not be able
to assist you with your medications.
Please complete this form and return it with your ADAP Application.
** The Maine ADAP is a part of the Maine Center for Disease Control and Prevention, HIV, STD,
and Viral Hepatitis Program
Our vision is Maine people living safe, healthy and productive lives
www.mainepublichealth.gov
one:
Phone: (207) 287-3747
Fax: (207) 287-3498
TTY: 800-606-0215
SEXUAL & REPRODUCTIVE HEALTH
IV.
SEXUAL & REPRODUCTIVE HEALTH
a. Safer Sex and Prevention for Positive People
b. Reproductive Health and OB/GYN Care
57
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68
Appendices:
¾ Project Inform. Sex and Prevention Concerns for Positive People. California:
Project Inform; 2002.
¾ AIDS InfoNet. Pregnancy and HIV: Fact Sheet Number 611. April 5, 2006.
Available at: www.aidsinfonet.org. Accessed December 2006.
¾ AIDS InfoNet. Children and HIV: Fact Sheet Number 612. April 18, 2006.
Available at: www.aidsinfonet.org. Accessed December 2006.
57
SEXUAL & REPRODUCTIVE HEALTH:
SAFER SEX & PREVENTION FOR POSITIVE PEOPLE
What can I do to keep from spreading HIV?
HIV is spread through contact with blood, semen, vaginal fluid, or breast milk. The most
common ways that people get infected with HIV are unprotected sex or sharing of
needles for drug use. HIV can also be passed from mother to infant at birth or through
breastfeeding.
To prevent spreading the virus to others:
• Use a latex condom every time you have sex.
• Do not share needles or syringes.
HIV is NOT spread through everyday casual contact with people at school, work,
home or anywhere else. HIV cannot be spread through contact with tears, sweat, or
saliva, or by sharing objects like cups, phones or toilet seats. HIV is not spread through
mosquito bites, coughing, or hugging someone with HIV.
If I am HIV positive, can I have sex with another HIV positive person
with no risk?
Even if both partners are HIV positive, there is still some risk. You or your sex partner
could pass on other sexually transmitted diseases, including other forms of HIV that
might make it more difficult for the doctors to treat you.
It is still important that you protect yourself and your partner by practicing safer sex. You
can get more information on safer sex through Project Inform at 1-800-822-7422 or at
www.projectinform.org/info/sex/index.shtml.
Safer Sex Basics
HIV is spread through blood, semen, and vaginal fluid. Any activity that doesn’t allow
blood, semen, or vaginal fluids to enter a person’s body is safe.
ƒ The surest way to avoid spreading sexually transmitted diseases (STDs), including
HIV, is not to have sexual intercourse.
ƒ Use a new latex condom and water-based lubricant like K-Y Jelly or Astroglide every
time you have vaginal or anal sex. (This is not risk free as a condom may break or
come off.)
ƒ Don’t use oil-based lubricants with condoms. Oils in hand lotions, massage oils,
Vaseline, etc. can cause the condom to leak or break.
58
ƒ
ƒ
ƒ
ƒ
People who are allergic to latex can use plastic (polyurethane) condoms. These come
in both male and female styles. Condoms made from animal skin do NOT protect
against HIV.
Lubricant containing Nonoxynol-9 (N-9) may increase the risk of HIV transmission.
Do not use them.
Don’t share sex toys. If you do share, wash them well and cover them with a fresh
condom each time.
For oral sex use a barrier such as a latex condom or plastic food wrap.
How do I talk to my partner or a future partner about HIV and safer
sex?
Telling a partner you have HIV or that you want to have safer sex can be scary, confusing
and embarrassing. You may fear being rejected or left alone. But sooner or later, it will
be important to talk about HIV with your partner. The longer you wait, the harder it gets.
If you talk with your partner before you get into a situation where HIV could be spread,
then you and your partner can make choices together about safer sex.
Here are some things to consider about when you’re thinking about to tell someone that
you’re HIV-positive:
ƒ
ƒ
ƒ
ƒ
ƒ
Think about how you would like to have this information told to you, if you were the
partner.
Get support and advice on talking to partners from your HIV doctor, counselor or
case manager.
Telling your partner you have HIV may bring on a strong reaction. Be sure that you
have support however your partner responds.
If you are going to be in a situation where HIV could be spread, practice safer sex.
This is the single most important thing you can do.
If you feel unsafe telling your partner, talk to your HIV doctor, counselor or case
manager. Or contact one of the domestic violence agencies listed in the Support
Services section of this Guide.
59
SEX AND PREVENTION
CONCERNS FOR
POSITIVE PEOPLE
A PUBLICATION FROM
Information,
Inspiration and
Advocacy for People
Living With HIV/AIDS
SEPTEMBER 2002
Safer sex and prevention messages are often
negative, female, male or transgendered, there
targeted solely to HIV-negative people. Yet, pre-
are many reasons to be concerned about safer
venting HIV and other infections remains an
sex and prevention. This publication explores
important issue for people living with HIV as
some of the most common sexual transmission
well. Whether your partner is HIV-positive, HIV-
concerns for people living with HIV.
WHAT’S INSIDE
What are the risks of passing HIV to my HIV-negative partner?: 2; What kinds of infections can I protect myself from getting?: 3; You can prevent getting
common infections at home: 4–5; We’re both positive. What are our concerns?: 6; The reality of safer sex: 6; Preventing your risk of infections: 7;
Transmission of multi-drug resistant HIV: 7; HIV and STDs: woman-to-woman: 7; Safer sex guidelines: 8.
©
    ,    ,   --  -- @. ..
what are the risks of passing HIV
to my HIV-negative partner?
    .   .  
2
that causes a lesion, like herpes, provides a portal for
A concern of many people living with HIV is passing
HIV to pass through and makes transmission more
HIV to their uninfected partner(s). While much
likely. Studies do show that even when a man has unevidence suggests that men transmit HIV more easily
detectable levels of HIV in his blood, there are somethan women, women can still pass HIV to uninfectimes detectable HIV levels in semen and pre-cum
ted partners—both male and female. This is because
fluid. HIV transmission from men with undetectHIV is present in blood (including menstrual blood),
able HIV levels in their blood has been documented
vaginal secretions and in cells in the vaginal and
several times.
anal walls. In fact, high levels of HIV can be found
In short, if you’re not practicing safer sex, there’s
in these areas even if there’s a low amount of HIV in
no way to know when you’re more or less likely to
your blood.
pass HIV to your partner(s). Exposure to vaginal or
For women, HIV levels in vaginal fluids greatly
anal secretions, semen or other blood with high levels
increase when you have gynecological (GYN)
of HIV increases your risk of transmission. The risk
conditions, like yeast infections or inflammation.
further increases when one’s
Several studies in test tubes
partner has an infection or
show that some sexually
inflammation. It’s also posstransmitted infections (STIs),
IN SHORT, IF YOU’RE NOT
ible to have active infections
like chlamydia, increase
PRACTICING SAFER SEX,
or GYN conditions without
HIV reproduction. Vaginal
THERE’S NO WAY TO KNOW
WHEN
YOU’RE
MORE
OR
having symptoms or knowing
inflammation, a common
LESS LIKELY TO PASS HIV
it. (For general guidelines
symptom of these infections,
TO YOUR PARTNER(S).
on safer sex practices, see
causes tiny scrapes and cuts
page 8.)
on the delicate skin of the
Finally, a number of
vaginal area that can then
known cases have shown multi-drug resistant HIV
harbor HIV. HIV levels can also temporarily increase
being passed from people living with HIV to their
after treating some of these conditions.
partners. What this means is that the newly infected
Likewise, men with active STIs, especially active
partners have a form of the virus difficult to treat with
herpes lesions, etc., are more likely to both acquire
anti-HIV drugs, leaving them with limited options
and transmit HIV. Less is known about whether HIV
to treat their infections.
levels are actually higher in blood and semen during
an active STIs in men, but certainly any infection
(
)
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    .   .  
what kinds of infections
can I protect myself from getting?
Prevention isn’t just about protecting someone else from
getting HIV; it’s also about protecting yourself from other
harmful infections. You can do something about many
common and serious infections. The risks of unsafe sex
are numerous because many STIs can cause serious harm
in people living with HIV.
Cytomegalovirus (CMV) is such a condition. While
most adults are infected with CMV, it doesn’t cause
disease in healthy, HIV-negative people. Therefore, most
people carry the virus but don’t have active CMV disease.
However, once CMV becomes an active infection, it’s the
leading cause of blindness and among the major causes
of death in people with AIDS. Ways to prevent CMV
infection include practicing safer sex.
CMV prevention is probably much more relevant to
women than to men, particularly adult gay men. The rate
of CMV infection among women is generally lower (40%
among women living with HIV) than what’s seen among
adult gay men (80–90% of whom are already infected
with CMV, regardless of HIV status). The bottom line is
that if you’re not infected with CMV, safer sex remains a
potent tool in helping to prevent CMV disease.
Like CMV, human papilloma virus (HPV) is another
STI. HPV is the virus that causes genital warts in some
people. These warts may or may not be visible by external
examination, yet might be present in the anus or cervix.
As one of the major causes of anal and cervical cancer,
HPV is common and difficult to treat among people
living with HIV. Some types of HPV are more likely to
develop into cancer than other types.
Both men and women are at risk for anal cancer
associated with HPV. Some studies suggest that a woman
living with HIV is more at risk of developing anal cancer
as opposed to cervical cancer associated with HPV infection. Unlike other conditions associated with HIV disease,
the rate of anal and cervical cancer associated with HPV
infection does not appear to be dramatically declining
with increased use of anti-HIV therapy. Unfortunately,
condom and other barrier protections may not protect
you from HPV infection and transmission, but they
might decrease the risk of transmission.
Hepatitis, cryptosporidiosis, parasites and other
infections can also be passed during sexual activity.
Every condition described above can be deadly in anyone
living with HIV, especially with a weakened immune
system. (For more information on how to prevent these
infections, see pages 4–5.)
It’s important for people living with HIV to protect
themselves from these unwanted and possibly dangerous
infections. Lab tests can detect these infections,
but your medical coverage may not pay for
them. You can ask your doctor about possibly
getting these tests. Then, use the results to build
a prevention plan that helps protect you from
getting new infections.
3
!
For more
treatment
information, call
Project Inform’s
toll-free National
HIV/AIDS
Treatment
Information
Hotline at
1-800-822-7422.
©
    ,    ,   --  -- @. ..
You can prevent getting
Bartonella (Cat Scratch Fever)
Cryptosporidiosis
A bacterial infection that can cause fevers, headaches and a
marked reduction in red blood cells (i.e. anemia).
A parasite that can cause diarrhea.
Put on the flea collar!
Avoid adopting kittens or cats under one
year old.
Avoid cat scratches or allowing cats to
lick open cuts or wounds. Promptly
wash all cat scratches or wounds.
Use flea control for cats.
›
›
›
Campylobacter
    .   .  
4
A bacterial infection that can cause diarrhea, abdominal pain
and vomiting.
Put down the baby,
and move away from the goat!
Wash hands after fecal contact (like after changing a baby’s
diaper) and after gardening or other contact with soil.
Avoid contact with young farm animals or animals with
diarrhea (including pet stores and animal shelters).
Wash hands after handling pets and avoid contact with
pet feces.
Boil water for at least one minute. If possible, install a
water filter system that can filter out Cryptosporidium.
Avoid swimming in water that may be contaminated by
Cryptosporidium. Some lakes, rivers, swimming pools
and salt water beaches may be contaminated with
human or animal waste that contains Cryptosporidium.
›
›
›
›
›
When Fluffy has the runs, run!
Avoid contact with animals that have diarrhea.
In general, get someone else to handle potty duties for pets.
›
›
For more information on preventing infection with crypto,
call Project Inform’s Hotline.
Coccidioidomycosis (Valley Fever)
Cytomegalovirus (CMV)
A fungal infection that causes fevers, difficulty in breathing
and night sweats.
A virus that infects the entire body. (Left untreated, CMV can
cause diarrhea, blindness, inflammation of the brain, etc.)
On your next archeological dig, bring Endust!
Although there are areas of the country such as the deserts
of the Southwest where it may be impossible to avoid
exposure to this pest, you can still reduce the risk of
exposure by avoiding excavation sites and dust storms.
Cryptococcosis
Safer sex is hot sex
(and it’s not just about HIV infection)!
Wash hands after fecal contact.
Follow safer sex practices.
If blood transfusions are required, only CMV antibody
negative or leukocyte-reduced blood products should be
used.
A fungal infection that primarily infects the brain resulting
in headaches, fevers and altered mental behavior.
Hepatitis A, B and C Virus (HAV, HBV and HCV)
›
Don’t feed the birds!
Avoid areas that may be heavily contaminated with the
pest that causes the infection (called Cryptococcus),
including areas with a lot of pigeon droppings. Avoid
handling birds, even those kept as pets.
›
›
›
›
Viral infections that can cause liver damage, failure and sometimes cancer.
Talk to your doctor about the appropriateness of
vaccination (for HAV and HBV).
Follow safer sex practices.
Learn about particular risks for HAV and traveling in
areas where threat for exposure is great and vaccination
prior to travel highly recommended.
›
›
›
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Herpes
Salmonella
A viral infection that can cause ulcer lesions around the mouth,
genitals and rectum.
A bacterial infection that can cause food poisoning and diarrhea.
Avoid Caesar salads or anything that may contain raw eggs.
Avoid eating under-cooked eggs and poultry.
Avoid contact with animals that have diarrhea.
Avoid contact with reptiles like snakes, lizards, iguanas
and turtles.
›
Follow safer sex practices.
Histoplasmosis
A fungal infection that can cause fevers, reduction in red blood
cells and difficulty in breathing.
Put down the mop and
move away from the chicken coop!
Although it may be impossible to avoid exposure to this
organism in areas of the country like the Midwest river
valleys, people can still reduce their risk by not cleaning
chicken coops, disturbing soil under bird roosting sites
or exploring caves.
›
›
›
›
›
Toxoplasmosis
A parasite that mostly infects the brain resulting in confusion
and delusional behavior.
Listeriosis
These recommendations only apply to people who are NOT
antibody positive to Toxoplasma.
Avoid eating raw or under-cooked meats. (Cook to an
internal temperature of 150°F or 65.5°C.)
Wash hands after contact with raw meat and after
gardening or other contact with soil.
Wash fruits and vegetables in filtered water or in a .05%
bleach solution before eating raw.
Wash hands after changing a cat’s litter box or preferably
have an HIV-negative person change it.
Cats should be kept indoors and be fed canned or dried
commercial cat food and not raw or undercooked meats.
A bacterial infection that can cause meningitis, an inflammation
in the brain.
Tuberculosis
Human Papilloma Virus
A viral infection that can cause warts, which can become cancerous.
›
›
›
Follow safer sex practices. Condoms cannot wholly
prevent HPV transmission.
Avoid eating any nonpasteurized dairy products,
such as soft cheeses like Brie
and goat cheese.
Heat ready-to-eat foods like
hot dogs and ensure that
they’re steaming hot before
eating them.
›
›
›
›
›
Primarily infects the lungs and can cause cough, weight loss
and fatigue.
›
If possible, avoid working or volunteering in facilities
considered high risk for tuberculosis, such as healthcare
and correctional facilities and homeless shelters.
Varicella-Zoster
A viral infection commonly known as chicken pox and shingles.
Microsporidiosis
A parasite that can cause diarrhea.
›
›
People who have NOT had chicken pox or shingles
should avoid direct contact with people with active
chicken pox or shingles.
Wash hands frequently and follow other good personal
hygiene measures.
©
    ,    ,   --  -- @. ..
    .   .  
common infections at home!
5
we’re both positive.
what are our concerns?
    .   .  
6
For people whose partner(s) also live with HIV, prevention messages and reasons to practice safer sex
sometimes become unclear. A common question is:
“If I’m positive and my partner is positive, then why
do we have to practice safer sex?” Simply put, safer
sex remains important among positive partners. This
is because in addition to preventing new infections
as discussed above, other factors place positive sex
partners at risk.
One of these factors is re-infection with HIV. While
the issue of re-infection remains unclear, some new
evidence shows that it can and does happen. If you’re
on therapy that HIV has become resistant to, it’s
possible for you to transmit the drug-resistant strain
to your partner, possibly crippling the benefits of
those therapies for your partner. On the other hand,
if your partner is on anti-HIV therapy, you could
become infected with his or her drug-resistant strain(s)
and have decreased benefits from therapy. (For more
information on drug-resistant virus, see page 7.)
Finally, it’s important to remember that your
partner’s viral load (amount of HIV in blood) may
not relate to the level of virus in semen or vaginal or
anal fluids. Therefore, while HIV levels in blood may
be undetectable by a lab test, they still may be present
in high levels elsewhere. (Note: Standard viral load
tests do not measure HIV in semen or vaginal or anal
fluids. Also, in studies, even when viral load tests of
semen came back undetectable, HIV-infected cells
could still be found in the semen. These cells are
believed important for passing HIV from person to
person.)
When both partners live with HIV, consider these
points when discussing safer sex:
Infections like CMV, HPV, herpes, hepatitis (B and
C) among others, remain major concerns. All these
are potentially deadly infections in people living
with HIV, but they can be prevented, to some
degree, through practicing safer sex.
Re-infection with drug-resistant or more aggressive strains of HIV remains a theoretical possibility.
It must be considered when negotiating safer sex
between positive partners.
›
›
the reality of safer sex
You put yourself at risk for infections
through unprotected sex with a
partner—activities that expose you
to your partner’s blood, blood products, urine, feces, semen or vaginal
or anal fluids. In some cases these
infections may never harm your
partner, but they might be life-threatening to you should your immune
system weaken as a result of HIV.
If your partner(s) is also living
with HIV, neither of you is immune
to new infections. Be aware of both
the real and theoretical risks as you
discuss and negotiate safer sex.
Every sexual behavior or activity
carries some level of infection risk.
It’s generally believed that some
activities are less risky than others,
but low risk obviously doesn’t mean
no risk.
Negotiating safer sex and using
risk reduction to prevent passing or
getting HIV or other infections is not
easy. Safer sex requires the involvement of willing partners. This is
especially difficult for women
because safe and low-cost womaninitiated methods of HIV prevention
do not currently exist. For people in
situations where domestic violence
occurs, this willing involvement can
be almost impossible. In this case,
seeking family violence prevention
services is probably the safest and
smartest plan of action.
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People living with HIV must consider taking precautions
to avoid exposing themselves to common infections,
which are possibly deadly in people with a weakened
immune system. Although safer sex is usually thought of
in regards to preventing HIV infection, exposure to
many major infections and STIs can be reduced if safer
sex is followed. Avoiding oral-anal contact can greatly
reduce the risk of getting parasites that can cause
diarrhea and other symptoms. (Examples of parasites
include tape worms, scabies and more common among
people with HIV are Toxoplasma and Cryptosporidium.)
Safer sex is not the only way to prevent exposure to
infections, however. There are a number of things you
can do to decrease your risk of potentially harmful
infections.
In general, people with HIV should not eat raw or
undercooked meats, poultry or seafood. Avoid unpasteurized dairy products, which may contain parasites,
bacteria or viruses that in turn can cause severe illness.
For example, eating raw shellfish can
result in hepatitis A infection. Risks
can be reduced further by following guidelines for
“safer” food
preparation.
transmission
of multi-drug
resistant HIV
There is increasing concern
over the transmission of
drug-resistant virus and
multi-drug resistant HIV.
People infected with multidrug resistant HIV are
unlikely to optimally benefit
from most, if not all, of the
available anti-HIV therapies.
While many known cases
of AZT-resistant HIV transmission have occurred in
the past, transmission of
multi-drug resistant virus is
being seen increasingly.
These observations underscore the importance of
including safer sex in your
life, even when you and
your partner(s) are both
living with HIV.
©
    .   .  
preventing your risk of infections
7
HIV and STDs:
woman-to-woman
Woman-to-woman sexual activity has generally been associated
with a lower risk of passing HIV, although a number of cases have
been reported. The risk of passing HIV and other STIs between
women has not been thoroughly studied. But the few studies to
date note that many women who have sex with women engage in
a number of high-risk behaviors that may increase their risks of
both getting and passing HIV and other STIs (including the types
of HPV associated with cervical and anal cancer). So in the
meantime, it’s best to play safe and refrain from making easy
assumptions about HIV and STI transmission during womanto-woman sex.
    ,    ,   --  -- @. ..
Safer sex guidelines
In addition to protecting from HIV infection and transmission,
practicing safer sex also reduces the risk of passing or contracting
other diseases, like chlamydia, gonorrhea, herpes and hepatitis.
These can be especially troublesome in people with weakened
immune systems. A few tips on how to protect yourself and your
partner during sex are found below.
One word: Plastics!
Try a breath mint instead!
Use latex condoms and plenty of water-based lubricant
(K-Y Jelly, Astroglide, Probe) for vaginal and anal sex.
If you’re sensitive (allergic) to latex, try polyurethane
condoms (Avanti). The female condom (Reality) is also
made of polyurethane. However, polyurethane condoms may have higher breakage problem than latex.
Avoid brushing or flossing your teeth up to two hours
before or after oral sex to minimize small cuts. Be
aware of bleeding gums, cuts or sores on or in the mouth.
Protect the environment
and your condoms!
    .   .  
8
Don’t use oil-containing lubricants like Crisco,
Vaseline, baby oil, lotion or whipped cream as they
can destroy latex. (Note: Oil-based lubes can be safely
used with polyurethane condoms.) Good water-based
lubricants last longer and often feel better anyway.
Read the label!
Many people avoid products with the spermicide,
Nonoxynol-9. Some studies now show it can cause
irritation that may promote STIs, including HIV.
Wrap it to go!
For oral sex with a man, it’s safest to use a condom.
For oral sex with a woman or oral-anal sex (rimming),
it’s safest to use a dental dam (latex square), plastic
food wrap, or a condom or latex glove cut to make a
flat sheet.
Let your fingers do
the walking!
Use latex gloves for hand jobs (sex with your hands) or
fisting. Try powder-free latex or polyurethane gloves
for folks who are sensitive to latex.
Good clean fun!
If you share sex toys (like dildos or vibrators), put on
a fresh condom for each user and/or when going to
or from the anus and vagina. Clean toys with bleach,
alcohol or soap and water between uses.
On the wild side!
Avoid contact with blood, semen and
vaginal and anal fluids. Sex toys
like whips or knives can
break the skin and should
not be used on another
person until they’re
disinfected with bleach
or cleaning solution.
www.projectinform.org
i
Go online around the clock and get connected to treatment
information in the privacy of your own home!
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SEXUAL & REPRODUCTIVE HEALTH: REPRODUCTIVE
HEALTH & OB/GYN CARE FOR WOMEN
If I am HIV positive, does this mean that I can never have children?
HIV positive people can have children, but having a baby is a decision to make very
carefully. HIV can be passed to the baby during pregnancy, at birth or after birth through
breastfeeding. For HIV-positive people with HIV-negative partners, having unprotected
sex can put both the partner and the baby at risk for becoming infected with HIV. If you
are an HIV-positive woman who wants to have a baby, it is very important to take all
steps to ensure that the amount of HIV virus in your body is as low as possible before
birth. If you are an HIV-positive man, there are special techniques to remove HIV from
the sperm. Seeing an obstetrician (pregnancy doctor) who specializes in HIV care is the
most important thing you can do to increase the chance that your baby will be born
healthy and free of HIV.
If you do not want to have a baby, make sure you are using an effective method of birth
control. For information regarding your sexual, reproductive and or/family planning
needs, you can contact local Family Planning sites through:
ƒ Family Planning Centers in Maine, 1-877-326-2345, www.mainefamilyplanning.org
I am HIV positive and already pregnant. Will my baby be positive?
No one can tell for sure if your baby will be born with HIV. There is always a chance.
Take the following steps to minimize the risk.
ƒ Get specialty care for HIV in addition to your regular OB/GYN care.
ƒ You will need to take certain medicines to get the amount of HIV as low as possible
in your body before delivery.
ƒ Your baby will need to be on anti-HIV medicines for the first few weeks/months of
its life, and see a specialist in the HIV pediatric clinic at the Maine Medical Center.
ƒ You should not breastfeed, as HIV can be passed through breast milk.
For specialty HIV OB/GYN care contact:
ƒ Maine Medical Center, OB/GYN Associates, 887 Congress St, Suite 200, Portland,
ME. (207) 771-5549. Interpreters available through telephone language line.
Is there special advice for women with HIV?
Women with HIV should be seen regularly for Gynecological services to check for STDs,
receive family planning counseling, and get a Pap test at least once a year. Women with
HIV are more likely to have abnormal Pap test results which if left untreated can lead to
cervical cancer. Infection with HIV means your body is less effective in controlling all
types of viruses. The human papilloma virus (HPV) is a specific virus that can infect
cervical cells (the cells that the Pap test looks at). If the Pap test result is abnormal, the
doctor may need to repeat it or do other tests.
68
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 611
PREGNANCY AND HIV
HOW DO BABIES GET AIDS?
The virus that causes AIDS can be
transmitted from an infected mother to her
newborn child. Without treatment, about
20% of babies of infected mothers get HIV.
Mothers with higher viral loads are more
likely to infect their babies. However, no
viral load is low enough to be “safe”.
Infection can occur any time during
pregnancy, but usually happens just before
or during delivery. The baby is more likely to
be infected if the delivery takes a long time.
During delivery, the newborn is exposed to
the mother’s blood. Drinking breast milk
from an infected woman can also infect
babies.
Mothers who are HIV-infected
should generally not breast-feed their
babies. To reduce the risk of HIV infection
when the father is HIV-positive, some
couples have used sperm washing and
artificial insemination.
HOW CAN WE PREVENT INFECTION
OF NEWBORNS?
Mothers can reduce the risk of infecting their
babies if they:
•
Use antiretroviral medications,
•
Keep the delivery time short, and
•
Take precautions with breast feeding.
Use antiretroviral medications: The risk
of transmitting HIV is extremely low if
antiretroviral
medications
are
used.
Transmission rates are only 1% to 2% if the
mother takes combination antiretroviral
therapy. The rate is about 4% when the
mother takes AZT during the last six months
of her pregnancy, and the newborn takes
AZT for six weeks after birth. See Fact
Sheet 411 for more information on AZT.
Even if the mother does not take
antiretroviral medications until she is in
labor, two methods cut transmission by
almost half.
• AZT and 3TC (See Fact Sheet 415)
during labor, and for both mother and child
for one week after the birth.
• One dose of nevirapine (See Fact Sheet
431) during labor, and one dose for the
newborn, 2 to 3 days after birth.
Combining nevirapine and AZT during labor
and delivery cuts transmission to only 2%.
However, resistance to nevirapine can
develop in up to 40% of women who take
the single dose. This reduces the success
of later antiretroviral therapy for the mother.
Resistance to nevirapine can also be
transmitted to newborns through breast
feeding. However, the shorter regimens are
more affordable for developing countries.
Keep delivery time short: The risk of
transmission increases with longer delivery
times. If the mother uses AZT and has a
viral load (see Fact Sheet 125) under 1,000,
the risk is almost zero. Mothers with a high
viral load might reduce their risk if they
deliver their baby by cesarean (C-) section.
BREAST FEEDING
Up to 14% of babies may get HIV infection
from infected breast milk. Breast feeding is
controversial, especially in the developing
world. Most transmission from breast
feeding occurs within the first two months
after birth. On the other hand, replacement
feeding within the first two years of life can
create additional risks for infant mortality
from various diseases.
HOW DO WE KNOW IF A NEWBORN
IS INFECTED?
Most babies born to infected mothers test
positive for HIV. Testing positive means you
have HIV antibodies in your blood. Fact
Sheet 102 has more information on HIV
tests. Babies get HIV antibodies from their
mother even if they aren’t infected.
If babies are infected with HIV, their own
immune systems will start to make
antibodies.
They will continue to test
positive.
If they are not infected, the
mother’s antibodies will disappear and the
babies will test negative after about 6 to 12
months.
the mother. See Fact Sheet 126 for more
information on resistance.
A pregnant woman should consider all of
the possible problems with antiretroviral
medications.
• Pregnant women should not to use both
ddI (Videx, see Fact Sheet 413) and d4T
(Zerit, see Fact Sheet 414) in their
antiretroviral treatment due to a high rate of
a dangerous side effect called lactic
acidosis.
• Do not use efavirenz (Sustiva) or
indinavir (Crixivan) during pregnancy.
• If you have more than 250 T-cells, do not
start using nevirapine (Viramune).
Some doctors suggest that women interrupt
their treatment during the first 3 months of
pregnancy for two reasons:
• The risk of missing doses due to nausea
and vomiting during early pregnancy, giving
HIV a chance to develop resistance
• The risk of birth defects, which is highest
during the first 3 months. There is almost
no evidence of these birth defects, except
with efavirenz.
• Experts disagree whether the use of
combination therapy results in a higher risk
of premature or low birth weight babies.
If you have HIV and you are pregnant, or if
you want to become pregnant, talk with your
doctor about your options for taking care of
yourself and reducing the risk of HIV
infection or birth defects for your new child.
Another test, similar to the HIV viral load test
(See Fact Sheet 125, Viral Load Tests), can
be used to find out if the baby is infected
with HIV. Instead of antibodies, these tests
detect the HIV virus in the blood.
THE BOTTOM LINE
WHAT ABOUT
HEALTH?
The risk of transmitting HIV to a newborn
can be virtually eliminated with “short
course” treatments taken only during labor
and delivery. But short treatments increase
the risk of resistance to the drugs used.
This can reduce the success of future
treatment for both mother and child.
THE
MOTHER’S
Recent studies show that HIV-positive
women who get pregnant do not get any
sicker than those who are not pregnant.
Becoming pregnant is not dangerous to the
health of an HIV-infected woman. This is
true even if the mother breast-feeds her
newborn for a full term (2 years).
However, “short-course” treatments to
prevent infection of a newborn are not the
best choice for the mother’s health.
Combination therapies are the standard
treatment.
If a pregnant woman takes
medications only during labor and delivery,
HIV might develop resistance to them. This
can reduce the future treatment options for
An HIV-infected woman who becomes
pregnant needs to think about her own
health and the health of her new child.
Pregnancy does not seem to make the
mother’s HIV disease any worse.
However, the risk of birth defects caused by
medications is greater during the first 3
months of pregnancy. If a mother chooses
to stop taking some medications during
pregnancy, her HIV disease could get
worse. Any woman with HIV who is thinking
about getting pregnant should carefully
discuss treatment options with her doctor.
Revised May 4, 2007
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 612
CHILDREN AND HIV
HOW SERIOUS
CHILDREN?
IS
HIV
FOR
Where antiretroviral medications (ARVs)
and good medical care for pregnant women
are available, new infections of children are
rare. Anyone age 13 or younger is counted
as a child in US health statistics. In 1992,
almost 1,000 children were infected. By
2002, there were just 92 new infections.
African-American newborns are much more
likely to be infected than children of other
races.
Most children with HIV were born to mothers
with HIV.
Others got a transfusion of
infected blood. In the developed world,
blood for transfusions is screened and most
pregnant women are taking ARVs. See fact
sheet 611 for more information on
pregnancy and HIV.
Infected mothers can pass HIV to their
newborns. This happens where mothers do
not get good medical care while they are
pregnant. It also happens where ARVs are
not available, or where blood for
transfusions is not always screened.
HOW
ARE
DIFFERENT?
CHILDREN
Children’s immune systems are still
developing. They have a different response
to HIV infection. CD4 cell counts (see fact
sheet 124) and viral load counts (see fact
sheet 125) are higher than in adults. An
infant’s viral load usually declines until age 4
or 5. Then it stabilizes.
Children also respond differently to ARVs.
They have larger increases in CD4 cell
counts and more diverse CD4 cells. They
seem to recover more of their immune
response than adults.
Infants have more fat and water in their
bodies.
This affects the amount of
medication available. Children have a very
high rate of metabolism. This gradually
slows as they mature.
The liver processes drugs and removes
them from the body. It takes several years
to mature. As it matures, drug levels in
children can change a lot.
Bones develop quickly during the early
years of life. ARVs can weaken bones in
adults. This was also seen in children. See
Fact Sheet 557 for more information on
bone problems in HIV.
RESEARCH ON CHILDREN
The US government supported the Pediatric
AIDS Clinical Trials Group to study AIDS in
children. In Europe, the Pediatric European
Network for Treatment of AIDS does similar
work.
It is very difficult to recruit children into HIV
clinical trials. In the US, many children with
HIV have already been in more than one
research study. With falling infection rates,
there are very few new cases of pediatric
HIV.
The US has considered ending
support for its pediatric trials network.
Important research questions may be
studied in adults.
medication may be unevenly distributed in
the tablet
It is difficult to know when to start treatment
for children. Immediate treatment might
prevent immune system damage. Delayed
treatment may provide better quality of life
for several years. However, HIV-related
diseases show up much faster in untreated
children than in adults. Without treatment,
about 20% of children die or develop AIDS
within one year. Most HIV-infected children
in the US start ART before they are 3
months old. US Guidelines for ART in
children were last updated in November
2005. They can be found on the Internet at
http://www.aidsinfo.nih.gov/Guidelines/
A recent study found that children with HIV
who were doing well on treatment had more
behavioral
problems
and
lower
developmental scores than normal.
CHILDREN AND ADHERENCE
TREATMENT FOR CHILDREN
Adherence (see fact sheet 405) is a major
challenge for children and infants. Both the
child and the parents may need extra help.
Many children do not understand why they
should put up with medication side effects.
HIV-infected children should be treated by a
pediatrician who knows about HIV.
Antiretroviral therapy (ART) works very well
for children. The death rate of children with
AIDS has dropped as much as for adults.
However, manufacturers were not required
to study their products in children until very
recently in the US. As a result, very few
ARVs have been studied in children. Still,
12 ARVs are approved for use by children.
The correct doses are not always known.
Children’s doses are sometimes based on
their weight.
Another method is body
surface area. This formula considers both
height and weight. As mentioned above,
several factors affect drug levels in children.
Dosing may have to be adjusted several
times as a child develops.
The doses of some medications for infants
and very young children can be
individualized.
They come in liquid or
powder form. Others come in a granular
form. Some pills can be crushed and added
to food or liquids. Some clinics teach
children how to swallow pills. Children who
can swallow pills have more medication
options.
Doctors sometimes try to cut adult tablets
into smaller pieces for children. However,
this can result in doses that are too low.
Some tablets are difficult to cut. Also, the
Their parents are usually HIV-positive. They
may have their own difficulties with
adherence.
Their children may take
different medications, on a different
schedule. Many ARVs taste bad or have a
strange texture. A feeding tube directly into
the stomach may be necessary if an infant
refuses to swallow medications.
THE BOTTOM LINE
Where ARVs and good medical care for
pregnant women are available, new
infections of children are rare.
Treatment of HIV-infected children is
complicated. Not all ARVs are approved for
use by children. The correct dosing is not
always known. Children may have a difficult
time tolerating medications and taking every
dose as scheduled.
However, because children’s immune
systems are still developing, they might
have a better chance of fully recovering from
damage caused by HIV.
Children with HIV should be treated by a
pediatrician with experience in HIV.
Revised December 30, 2006
A project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
LIVING WELL WITH HIV
V.
LIVING WELL WITH HIV
a. Taking Care of Yourself
b. Nutrition
71
72
81
Appendices:
¾ Pickett J. I’m Dancing as Fast as I Can. The Body Website.
September/October 1999. Available at:
www.thebody.com/tpan/septoct_99/dancing.html. Accessed November
2006.
¾ Lewis J and Slocum M. Creed – You are Not Alone. The Body Website.
Available at: www.thebody.com/bp/creed.html. Accessed November
2006.
¾ AIDS InfoNet. Nutrition: Fact Sheet Number 800. February 21, 2006.
Available at: www.aidsinfonet.org. Accessed December 2006.
71
LIVING WELL WITH HIV
How do I take care of myself?
There are many things you can do for yourself to stay healthy. Here are some of the most
important:
ƒ Find a doctor who specializes in HIV treatment.
ƒ Follow your doctor’s instructions. Talk to your doctor about your questions and
concerns.
ƒ If your doctor prescribes medicine for you, take the medicine just the way he or she
tells you. Taking your medicine incorrectly gives your HIV infection more chance to
fight back. If you have side effects from your medicine, call your doctor for advice—
don’t change how you take your medicine on your own or because of what friends tell
you.
ƒ Get immunizations (shots) to prevent pneumonia and flu.
ƒ If you smoke or use drugs not prescribed by your doctor, quit.
ƒ Eat healthy foods. Eating well is very important to keep you strong, and keep your
energy up and your weight stable.
ƒ Practice safer sex.
ƒ Exercise regularly. Exercise helps you stay strong, and helps relieve stress.
ƒ Get enough sleep and rest.
ƒ Take time to relax. Many people find prayer or meditation, along with exercise and
rest, helps them cope with the stress of living with HIV.
72
I'm Dancing as Fast as I Can - The Body
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I'm Dancing as Fast as I Can
An Insightful, Funny Account About How HIV Has Changed One Man's Life
By Jim Pickett
September/October 1999
The funny thing about HIV is that it changes everything in your life. Funnier still, at the very same time
everything stays the same. It's a regular laugh riot.
Good thing -- Perfect, uncontestable excuses, anytime, anywhere.
Bad thing -- They're quite often true, and ya can't use 'em on the family cuz they don't know the deal yet.
The high velocity melodrama associated with a positive test result, including the storm clouds, the rolling
thunder, the Tammy Faye Bakker eyes, the wailing, the whole "woe, woe is me" kielbasa, inevitably segues
into yet another tired afternoon rerun of Match Game with all those sad celebrities who are both funny and
not funny. Because ya aren't, ya aren't, yarn't gonna die anytime soon... which, hello, is a major drag at first
realization. Talk about a downer, you have all this emotion going on, you're feeling the absolute worst you've
ever felt, you're a sorry sack of sick, Death has come a knockin', and all you want to do is to invite it in, offer
it a tall glass of cool, refreshing tap water with a flexi-straw, and take to the bed wearing something silk,
accessorized perhaps by a huge turban and a pair of supersized Jackie O's, and whisper feebly as you chain
smoke (what does it matter anymore?) and prepare to call it in, cash in your chips, check out of this taco
stand. Of course it's all shot in high contrast black and white, lots of shadows, very film noir, and as your
many distinguished guests file by to pay you homage one last time, they can't help but remark to one another
how valiant you're behaving under such grim circumstances. "He's so brave." they say. None of them can
even believe it, no one else would be so strong as this. Comparisons to Mother Theresa, or at least the Flying
Nun, seem appropriate. "There but for the grace of God," they say. Your quiet strength is helping everyone
else cope with the immense pain of losing you. It's quite glorious, actually. The director loves your work, this
is going to be your thirty-two-ouncer if not your Magnum Opus. At one point the camera catches one
perfectly formed teardrop rolling down the drawn face of your first major love, the one who pulverized your
heart and made you run into traffic and cry and scream and smash things (there'd be so many more). He's
flown in from Philadelphia (isn't that ironic?) to say goodbye and regret how he hurt you, begging for
repentance, wishing it could all be different, somehow, somewhere. Such wasted opportunities, the end so
very near. "You'll miss me when I'm gone," you croak, dismissing him with a heavy sigh and an exhausted
wave of a gloved hand. He is overcome by grief and impending loss, the camera witnesses his crumpling just
outside the door, just outside your field of vision. Fade out.
Well. The next morning the alarm goes off at the same time and you awake in that same puddle of drool on
your pillow. Your breath still stinks. You gotta pee. You gotta make some coffee, get ready for work, there
are bills to pay. People to see. Trains to catch. Because yarn't dying (anytime soon). The world, believe it or
not, is still rotating on its axis, probably just to spite you. The guy on the corner still stands in his balcony and
pretends he's Evita, hollering and carrying on, shaking his fist at the thousands of little voices in his head.
4/24/2008 12:21 PM
I'm Dancing as Fast as I Can - The Body
2 of 4
http://www.thebody.com/content/art882.html?ts=pf
Yarn't dying just yet, get used to it. Get over yourself, there are people with worse problems than you, and
again probably just to spite you, they don't know what you're going through, don't care, and never will. Yarn't
dying, Blanche. Besides, your costume's looking tatty, you've bent the Jackie O's in your sleep and the turban
has unraveled. And the camera makes you look fat, the crew is cranky, and the director is hitting on your ex.
Good thing -- People feel sorry for you.
Bad thing -- People feel sorry for you.
This disease is a mind fuck. For many of us, thanks to all the "arsenals" and assorted horse pills out there, our
personal viral companion is going to take a long, long time to finish its number, which is a doozy, being sung
in Latin, off-key, with no intermissions. Many of us will pass on due to other causes, ya know, hit by a car,
struck by lightening, Mad Cow, dingo stampede, shot point blank by a foaming Charlton Heston. Yet every
day with HIV you confront the cold reality of your own mortality, of the precious fragility of your life. And
being impatient, you would just like to get it all over with. Pronto.
Well good luck.
The first irony. In the almost four years that I've been HIV positive, I've been seriously ill several times, in
the hospital a couple, and close to cashing it in once. All this not from HIV related causes but from asthma,
an often deadly, pain in the ass, complicated long term illness I've had since birth, thirty-three and a half
years ago.
The second irony. The HIV didn't make me sick until I started on the meds that are going to help keep me
well. Now this is the one that really gets me. I started on a triple combo a couple of years into this whole
thing, this bizarre journey, when I was feeling perfectly fine. Everything had been just Peaches and Herb,
very 70's radio on your AM dial, except for the latest blood work that showed a marked rise in my viral load
and a marked decrease in my CD4s. Oh super. I felt great, but there it was in black and white, the disease was
progressing, numbers don't lie, better do something about it. So I finally succumbed, to the mantra of "hit
hard, hit early", to the strange glamour of cutting edge HIV therapy, to those ubiquitous ads that made me
think I'd be hot and buff and glossy, shooting the rapids in a kayak, if I only were cocktailing.
So I signed up. What choice did I have?
But my sun dappled technicolor fantasies on how I would triumph over this wily virus were usurped by the
opposite of "glossy", which I guess might as well be called reality. And as those Buddhists might say, "reality
bites". It's certainly not Hollywood, it's more like Milwaukee, really. The only "shooting rapids" I've dealt
with have been diarrhea... catch the wave. Exciting, unpredictable diarrhea. Farts gone terribly wrong,
split-second timing marking the difference between "fresh" and "soiled". If glamour is nausea, fatigue and
headaches, gagging, choking, farting, and burping, then call me CoCo cuz I got it down cold, dahling. Puke is
the new puce. High collars are back, the better to camouflage that lipodystrophy that's become so popular. Ah
shucks, sarge, I may be able to climb to the mountain top and shake my fists at the sky, but I'm gonna have to
rip down my cargos and frantically squirt a nuclear, membraneous gruel from betwixt my firm glutes as soon
as I get there. But hey, I've got well over 700 CD4s and the virus remains undetectable.
Good thing -- Constipation is not a concern.
Bad thing -- Diarrhea for eternity.
I have a friend who's positive. He attempted going on drugs a couple years back and, surprise, surprise, they
made him completely miserable. Did he gut it out? Did he go from combo to combo 'til he found something
that fit, if not perfectly, close enough? No, he just quit, refusing to let his life be substantially diminished by
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the myriad debilitating side effects most of the meds deliver with such oomph, such gusto. He hasn't taken
anything since, he remains healthy, feels good, and remains blissfully clueless as to his viral load and CD4
measurements, showing little concern for the obsessive-compulsive tracking many of us get caught up in. He
feels good. He's happy, vital, living a fuller, more active life than most people I know.
How stupid is that?
I take twenty pills a day. Sixteen of which are enormously enormous. Glaxo gets all thrilled with itself when
it combines AZT and 3TC into one pill, Combivir. I say big deal, those pills were tiny to begin with. Big
fuckin' whoop. Why do sixteen of mine, those protease inhibitors called Agenerase, have to be big enough to
gag even the most talented of throats? Why the hell can't they combivir those suckers? Twenty pills a day.
Twenty pills a day, that for the first several months made me sick to the gills, and still do to this very moment
as I write this, just not as severely. Twenty pills a day that are helping contribute to the very real threat of
deforestation I pose via my generous, ongoing use of mass quantities of toilet paper. Twenty pills a day that
remind me how "sick" I am, keeping me tethered, enslaved to the idea of "disease". Ah the emotional and
mental battles. Can I do this forever? Can I take 7300 pills a year, endlessly? Can I remember every time?
Can I resist the temptation to skip, to indulge in a drug holiday here and there? Can my body tolerate it all?
And what will happen when it can't?
Good thing -- Denial's not an option.
Bad thing -- Denial's not an option.
My friend is a brilliant guy. He's well-informed about HIV and AIDS. And he's made a conscious,
conscientious decision not to join the hysteria fostered by pharmaceutical companies, doctors, the media, and
yes, us, and he's decided to wait. Happily. Maybe he won't make it twenty years. But the time he has here
won't be spent gagging down toxic dolls, oversleeping, undersleeping, canceling business appointments and
social engagements. It won't be spent fighting heartburn and managing gastrointestinal distress, it won't be
spent atop every toilet in the city, and it won't be running out of the bakery because the smell of fresh bread is
all of a sudden repulsive. It won't be chained to tests and percentages and numbers and every new meaning of
"undetectable", over every fabulous new therapy that's mo' bettah.
Not yet at least. Because he has a life.
My way is to stay the course, stick with the program, tempted though I've been to say take it and shove it.
Because it is working for me, and it's giving me a chance so many never had. I'd be a fool to screw that up,
wouldn't I? Not to say that it doesn't suck, because it does. It sucks big time. It just doesn't suck as bad as it
used to.
Some Advice
Do healthy things to make yourself feel good. Get a massage. As often as you can. See a shrink. For as long
as it takes. It doesn't have to be all about your HIV status, but dealing with the issues you have, dealing with
your life, will make you feel better, will make you healthier, though it may not be easily measured by a test
result on your chart. It's all about that mental/emotional/physical equation. Healing energies need to be
directed towards all three. Taking the pills and showing up for blood draws is not enough, you have to find
joy in your life if you're going to survive. Call it coincidence, but since I started shrinking regularly, which
began around the same time I started on meds, I have progressively felt happier and more secure about
myself, concurrently noticing a decrease in allergy and asthma problems, even a lessening of my combo's
side effects. (Could I really have just spent a long weekend away with my honey and not had even one squirt
of diarrhea?) Or maybe I'm just not letting them bother me so much. Whatever, they're not dominating my
life like they once did. It's about accepting and loving yourself. And I'll tell ya what, love is the best
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complementary therapy going. First love yourself (essential), then love your mom, love a puppy, love a
friend, love a lover. And let them love you back. Love, just love. Love each other like crazy, act the fool, sing
off-key, write bad haiku, pick up the phone, drop a card in the mail, rub their belly, pat their head, tell them
how important they are in your life, cherish their existence in innumerable small ways. Enjoy who they are,
not who you'd like them to be. Do let love in your life, be open to it, be willing to experience it, and I'll
guarantee you that the diarrhea won't seem so catastrophic, the heinous pills won't seem so heinous. For
simply and profoundly, love is the answer.
Good thing -- Making the best of a bad situation, and having it work.
Old Tibetan saying -- "It is better to live one year in the life of a Tiger, than to live 15 years in the life of a
sheep."
Don't know about you, but I feel g-r-r-r-r-reat!
Got a comment on this article? Write to Jim at [email protected].
To read more of Jim Pickett's columns, click here.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware.
You can find this article online by typing this address into your Web browser:
http://thebody.com/content/art882.html
General Disclaimer:
The Body is designed for educational purposes only and is not engaged in rendering medical advice or
professional services. The information provided through The Body should not be used for diagnosing or
treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you
may have a health problem, consult your healthcare provider.
4/24/2008 12:21 PM
Creed -- You Are Not Alone - The Body
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• Back to Web version of article
Creed -- You Are Not Alone
There are nearly a million of us in the United States. Don't isolate yourselves.
By Jim Lewis and Michael Slocum
Maybe you have tested HIV-positive very recently; maybe you've known it for some time, but this is the first
time you've reached out for information or support. You need to know that you are not alone. There are an
estimated 1 million HIV-positive people in the United States.
Testing positive for HIV does not mean that you have AIDS, but HIV is probably the greatest threat to your
life you have ever faced. This virus may remain inactive in your body for a long time, but it may not. If you
are healthy now, you may still go on to develop some sort of health problems related to HIV. You may
develop AIDS. There remain many uncertainties surrounding HIV, and though there is currently no "cure"
for HIV infection, there are treatments. You need to learn what information is available and make informed
choices about your health.
Many HIV-positive people now live fulfilling and happy lives. Many are healthy and show no symptoms of
disease. Many choose to take treatments and drugs that promise to lengthen their lives. So, as serious as this
is, there is hope. You do not have to look at testing HIV-positive as if you've been given a death sentence.
It's a good thing you found this out. As upsetting as testing positive may have been for you, you are better off
knowing, so you can learn about HIV and decide what you want to do about it. The fact that you cared
enough about yourself to get the HIV test and the fact that you are reading this magazine show that you are
concerned about your health. So give yourself some credit. You have taken important first steps to take care
of yourself, and you should be glad about it.
Years ago, those who tested HIV-positive had few places to turn for support. These people felt like they were
hanging in limbo. Fortunately, much has changed. We know more about HIV now and many organizations
have formed around the world to offer support and information to people living with this virus. Many have
already faced the questions inherent in living with HIV, and many will follow. You don't have to face this by
yourself. There are lots of hands reaching out to assist you.
Your Emotional Health
Finding out that you are infected is usually overwhelming. Even if you had suspected it for some time,
learning that you are can be a very traumatic experience. Testing HIV-positive has led some people to quit
their jobs, quickly write out their wills, and say goodbye to their friends and family, only to discover that
they aren't sick and will probably live for many years to come. It's common to perceive these results as an
immediate death sentence, but this is simply not true.
What you are feeling now is perfectly normal. Anger, fear, confusion, numbness, depression -- all are
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completely natural reactions to the kind of news you've heard. If you've known for even several weeks, you
may find yourself having a normal day, then suddenly remember that you are HIV-positive. It's very common
for this kind of realization to just "hit you in the face" out of nowhere over and over again. You are not going
crazy if this happens to you. Your moods may swing from profound sadness one moment to extreme anger
the next. That's normal, too.
The first step to getting through this emotional turmoil is to acknowledge what you are feeling. Don't be
surprised to find yourself going through the day in a state of shock. Allow yourself to feel nothing. Your
emotions will come rushing back in soon enough. This is merely a way that your mind "turns off" to allow
you to cope with a problem.
If you are feeling angry, that's fine. You have every right to be angry and a lot to be angry about. This virus is
threatening your very existence. It's okay to express this anger. If you're frightened, acknowledge your fears.
You are thinking about things that would make anyone fearful. You are allowed to feel the way you do. Don't
be hard on yourself or think you have to be strong. You don't have to be anything.
Fear of Sickness and Death
Almost everyone is afraid of getting sick and dying. If you're young, you may never have had to face the
death of someone close to you. We often think of dying as something that happens only when we're old. You
may never have really considered the reality of your own death before. Now, suddenly, you are HIV-positive
and your mortality becomes very real. You may be afraid of pain, of hospitals, or of becoming unattractive to
others through an illness.
Your reaction to the idea of getting sick or dying could go one of two ways. You may decide that you are
definitely going to live and that there is no way that this virus is ever going to "get" you. This is a form of
what's called denial -- refusing to face some of the possibilities of living with HIV. If you find yourself
feeling this way, try to keep in mind that having hope to go on with your life is good. However, it can
become dangerous if it keeps you from taking care of yourself.
The other way you might choose to deal with the subject is by deciding that you are absolutely going to die
of this and there is nothing you can do about it. If you go this way, you may find yourself fantasizing about
your own sickness and death. You have to keep in mind that there are many people who are HIV-positive
who are living productive, happy lives, and you can be among them if you choose. It's good to face up to the
possible consequences of this infection, but not to the point that living today becomes less important than
your fear of the future. It helps to remind yourself that everyone will die, but that doesn't prevent most people
from living today.
Starting Over
One of the truths of testing HIV-positive is that once you know, you can never not know again. For better or
worse, your life will always be different now. You may be experiencing great feelings of loss about this. You
may feel that certain areas of your life are now in the hands of doctors, insurance companies, or symptoms.
This can make you feel as though you have less control over your own life and may cause you incredible
anxiety.
Know this -- you do not have to give up control of your life. By arming yourself with information and
deciding what is right for you, you will soon realize that you are still the same person you were. It is your
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life, your body, your health, and no matter how well-meaning your family, your friends, or your doctor may
be, they have no right to take control of your life. Allow yourself to take time to decide what you want to do.
Then go do it.
You may find that many of the priorities in your life change rapidly. If you are considering making major
changes in your life, just make sure that you think them through carefully. Many HIV-positive people have
made huge changes in the way they live. Many have broken bad habits, such as drinking too much or
smoking. Some have gotten out of bad relationships or quit jobs they really hated. Facing the possibility of
getting sick or dying has made many of our lives much better because it has made us take action in areas we
have previously ignored or repeatedly put off. Mortality can be a great motivator.
Some people blame themselves for being HIV-positive. This kind of guilt and self-hate is very destructive.
Regardless of how you were infected, you did not go somewhere or do something with the intention of
infecting yourself -- so why beat yourself up about it? You are facing enough right now; you don't need to
punish yourself for testing HIV-positive also.
Grief, or extreme sadness, is one of the emotions that most HIV-positive people face at some point. You may
be grieving for yourself, facing the possibility of your own death. For many of us, the virus is not only
affecting our lives, but the lives of those we love. Many have lost friends and loved ones to HIV, or have
many people in their lives who are also HIV-positive. Allow yourself to express grief and fear in some way.
Permit yourself to cry. These feelings are valuable and normal; ignoring them will not make them go away.
You may also feel that you are now damaged in some way -- that no one will want to touch you or love you
or that you are less desirable because you are HIV-positive. You may feel that you will never be able to love
again, that no one would want to be with you if they knew that you were HIV-positive. These feelings will
pass. You are not "damaged goods." You are still a valuable person, as capable of giving and receiving love
as ever. You can make your own decisions, relax, and enjoy each day. This may be a struggle and you may
have to find new ways of coping with daily life, but it's worth it.
Getting Support
Many of us have been raised with the idea of "rugged individualism," that we must face things on our own,
that this is what "strength" is all about. Asking for help or reaching out for support are often considered
weaknesses. Consequently, a very common response to testing HIV-positive is withdrawal. We isolate
ourselves, hiding the news of our status. This can be very painful.
Your life does not have to be doom and gloom. It is possible to have a very positive attitude as a person
living with HIV -- millions are doing it right now -- but it is much more difficult to get on with your life and
live happily if you're trying to do it alone.
There's no need for you to handle this by yourself, and it's probably a mistake even to try to do it. You are not
the only person facing this. Learn who the others are and what they have to offer. Just hearing how someone
else has adjusted to living with the virus can be enough to help you realize that life is still good, that you can
still have love and laughter. And you may also be surprised to learn that your own sharing can help others. In
sharing the issues that concern us, each of our voices lends strength to the others.
Support groups, like those at Body Positive, are a powerful means of learning to cope with this new
beginning. There are support groups offered by HIV/AIDS organizations across the country. If you don't
know of an HIV/AIDS organization in your area, call us at (212) 566-7333. If there's no support group in
your area, you may be just the person to get one started. Just remember: those millions of people living
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successfully with HIV are people who've reached out to get the help they needed. Wherever you are, you can
find support, or the means to create it. It just doesn't make sense for us to face the same issues without
helping each other out. We are not alone. And neither are you.
Michael Slocum and Jim Lewis were editors of Body Positive. HIV/AIDS organizations around the world
have reprinted "You Are Not Alone" in their own languages.
This article was provided by Body Positive. It is a part of the publication Body Positive. You can find this
article online by typing this address into your Web browser:
http://thebody.com/content/art30259.html
General Disclaimer:
The Body is designed for educational purposes only and is not engaged in rendering medical advice or
professional services. The information provided through The Body should not be used for diagnosing or
treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you
may have a health problem, consult your healthcare provider.
4/24/2008 12:20 PM
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 800
NUTRITION
WHY
IS
IMPORTANT?
NUTRITION
Good nutrition means getting enough
macronutrients
and
micronutrients.
Macronutrients contain calories (energy):
proteins, carbohydrates, and fats. They
help you maintain your body weight.
Micronutrients include vitamins and
minerals. They keep your cells working
properly, but will not prevent weight loss.
Good nutrition can be a problem for many
people with HIV. When your body fights
any infection, it uses more energy and
you need to eat more than normal. But
when you feel sick, you eat less than
normal.
Some medications can upset your
stomach,
and
some
opportunistic
infections can affect the mouth or throat.
This makes it difficult to eat. Also, some
medications
and
infections
cause
diarrhea. If you have diarrhea, your body
actually uses less of what you eat.
When you lose weight, you might be
losing fat, or you might be losing lean
body weight like muscle. If you lose too
much lean weight, your body chemistry
changes. This condition is called wasting
syndrome or cachexia. Wasting can kill
you. If you lose more than 5% of your
body weight, it could be a sign of wasting.
Talk to your doctor.
NUTRITION GUIDELINES FOR
PEOPLE WITH HIV
First, eat more. Extra muscle weight will
help you fight HIV. This is very important.
Many people want to lose weight, but for
people with HIV, it can be dangerous.
Make sure you eat plenty of protein and
starches, with moderate amounts of fat.
•
Protein helps build and maintain your
muscles. Meats, fish, beans, nuts,
and seeds are good sources.
•
Carbohydrates give you energy.
Complex carbohydrates come from
grains, cereals, vegetables, and
fruits. They are a “time release”
energy source and are a good source
of fiber and nutrients.
Simple
carbohydrates, or sugars, give you
quick energy. You can get sugars in
fresh or dried fruit, honey, jam, or
syrups.
•
Fat gives you extra energy. You
need some — but not too much. The
“monounsaturated” fats in nuts,
seeds, canola and olive oils, and fish
are considered “good” fats.
The
“saturated” fats in butter and animal
products are “bad” fats.
A moderate exercise program will help
your body turn your food into muscle.
Take it easy, and work exercise into your
daily activities.
Drinking enough liquids is very important
when you have HIV. Extra water can
reduce the side effects of medications. It
can help you avoid a dry mouth and
constipation. Remember that drinking
tea, coffee, colas, chocolate, or alcohol
can actually make you lose body liquid.
PRACTICE FOOD SAFETY
It’s very important to protect yourself
against infections that can be carried by
food or water.
Be sure to wash your hands before
preparing food, and keep all of your
kitchen tools and work areas clean.
Wash all fruits and vegetables carefully.
Don’t eat raw or undercooked eggs or
meat, and clean up juices from raw meat
quickly. Keep leftovers refrigerated and
eat them within three days. Check the
expiration date on foods. Don’t buy them
or eat them if they’re outdated.
Some germs are spread through tap
water. If your public water supply isn’t
totally pure, drink bottled water.
WHAT ABOUT SUPPLEMENTS?
Some people find it difficult to go
shopping and prepare meals all the time.
Supplements can help you maintain your
body weight and get the vitamins and
minerals you need. Don’t use a product
designed to help you lose weight, even if
it says it contains everything needed for
good nutrition! Your health care provider
can help you choose a supplement that’s
right for you.
Vitamin and mineral supplements can be
very helpful. They are discussed in Fact
Sheet 801.
THE BOTTOM LINE
Good nutrition is very important for people
with HIV. When you are HIV-positive, you
will need to increase the amount of food
you eat and maintain your lean body
weight.
Be sure to eat a balanced diet, including
plenty of protein and whole grain foods,
with some sugar and fat. An exercise
program will help build and maintain
muscle.
Drink plenty of liquids to help your body
deal with any medications you are taking.
Practice food safety. Keep your kitchen
clean, wash foods, and be careful about
food preparation and storage. If your tap
water isn’t pure, drink bottled water.
If you feel you need to use nutritional
supplements, be sure to get some expert
advice from your health care provider.
FOR MORE INFORMATION
You can get more information on nutrition
and HIV from the following:
A Clinician's Guide To Nutrition In HIV
and AIDS, by Cade Fields-Gardner and
others, published by the American
Dietetic Association, $26 plus $5 shipping
and handling: The American Dietetic
Association, P.O. Box 97215, Chicago IL
60678-7215; or 800-877-1600, ext. 5000.
Eat Up! Nutrition Advice and Food
Ideas for People Living with HIV and
AIDS by Charlie Smigelski, RD, $10.00,
http://www.eatupbooks.com/hivbooks.html
Nutrition and HIV: A New Model for
Treatment by Mary Romeyn, MD,
$18.95, published by Jossey-Bass, Inc,
telephone 415-433-1740.
Fact sheets on HIV nutrition are available
at http://www.larklands.net
Reviewed May 13, 2007
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
SUPPORT SERVICES
VI.
SUPPORT SERVICES
a. AIDS Service Organizations
b. Support Groups, Hotlines and Mental Health
c. Domestic Violence Hotlines and Support
d. Substance Abuse Services
e. More Support Services
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86
87
88
89
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SUPPORT SERVICES: AIDS SERVICE
ORGANIZATIONS & CASE MANAGEMENT
I just learned that I am HIV positive. Where can I get support?
Studies have shown that people who have support from others do better with living with
HIV. Support can come in different ways for different people. Some people turn to a
family member for support. Others tell a close friend. Other people get support from their
HIV doctor or social worker.
A good person to ask for support and help is an HIV case manager. A case manager can
help you to find the services you need, not just medical care but housing, transportation,
nutrition, legal services and mental health care. Talk to your doctor or social worker, or
contact any of the agencies below, to discuss whether case management might be a good
option for you.
ƒ St. Mary’s Regional Medical Center, P.O. Box 291, Campus Ave., Lewiston, ME
04243. (207) 777-8507 or (207) 777-8533. (Androscoggin and Oxford Counties).
Interpreters available through telephone language line.
ƒ Frannie Peabody Center, 335 Valley St., Portland, ME 04102. (207) 774-6877
(Cumberland and York Counties).
ƒ Eastern Maine AIDS Network, P.O. Box 2038, 370 Harlow St., Bangor, ME 04402.
(207) 990-3626 (Penobscot, Piscataquis, and Aroostook Counties).
ƒ The Horizon Program, 9 Green St., Ground Floor, Augusta, ME 04330. (207) 6213785 (Michael Kristan or Kim Hoak). (Franklin, Kennebec, Somerset, Lincoln,
Waldo, Knox and Sagadahoc Counties).
ƒ Down East AIDS Network, 25 Pine St., Suite A., Ellsworth, ME 04605. (207) 6673506 (Washington and Hancock Counties). English and Spanish spoken.
ƒ Preble Street Resource Center, 18 Portland St, PO Box 1459, Portland, ME 04104.
(207) 874-6560 (Portland). Spanish spoken & interpreters available. Referrals to HIV
case management for homeless people living with HIV.
ƒ State of Maine HIV Care Program, (207)287-3747.
Comprehensive Risk Counseling and Services (CRCS) is another service provided for
people testing positive for HIV. CRCS is an intensive, individual level, client-centered
risk reduction intervention for people at high risk for HIV infection or transmission. For
more information on CRCS, contact one of the following agencies that provide the
service:
ƒ HealthReach Harm Reduction, 9 Green St., Augusta, ME 04330.
(207) 621-3770 (Michael Kristan or Kim Hoak).
ƒ Healthways/Regional Medical Center of Lubec, Lubec Health Clinic, 43 South
Lubec Rd., Lubec, ME 04652. (207) 733-1090 ext. 2226.
ƒ The Virology Treatment Center, 48 Gilman St., Portland, ME 04101. (207) 6622099.
83
More Information on ASO Services:
ƒ
St. Mary’s Regional Medical Center, P.O. Box 291 Campus Ave., Lewiston, ME
04243. (207) 777-8507 or 207-777-8533. Interpreters available. Hours M-F 8- 4:30
by appointment only. www.stmarysmaine.com. St. Mary’s is dedicated to providing
high quality case management services to individuals living in Androscoggin and
Oxford countries with the diagnosis of HIV or AIDS. Their goal is to connect
individuals living with the HIV or AIDS with high quality cost efficient health care
services. They offer: education services, prevention services, access to local support
group, advocacy, social events, and referrals to community resources. The program is
supported by State and Federal grants and there is no cost to enroll. Individuals can be
referred to the case management program by their doctor or health care provider or
they can self refer. They accept MaineCare.
ƒ
Frannie Peabody Center, 335 Valley St., Portland, ME 04102. (207) 774-6877.
www.peabodycenter.org. Frannie Peabody serves Cumberland and York counties,
providing referrals and advocacy to meet the medical, psychological, legal, job
training, and physical needs of clients. Case managers offer support, transportation
and coordination of care. They regularly assist clients with applications related to
housing; social services and entitlement programs; as well as legal, mental health, and
substance use issues. Case management and prevention staff work together to make
secondary prevention services available, helping clients to assess their risk behaviors
and reduce the spread of HIV. To insure low-barrier access, client services are
delivered at their offices, clients’ homes, hospitals, nursing homes, correctional
facilities, and in appropriate community settings. The Client Services program
provides financial assistance for a variety of unreimbursed medical expenses to
clients who meet income guidelines and have not exceeded an annual cap. Clients are
able to participate in our holiday food program and attend a holiday gathering. They
also host regular and time-limited support groups, monthly community night, and
publish a client newsletter, Positive Reaction.
ƒ
Eastern Maine Aids Network, P.O. Box 2038, 370 Harlow St., Bangor, ME. 04402.
(207) 990-3626. Hours M-F 9-5. www.maineaidsnetwork.com. EMAN serves
Penobscot, Piscataquis, and Aroostook Counties. They offer case management
services to ALL persons living with HIV / AIDS. Case Management helps identify
the social, medical, psychological, legal and other needs of persons living with HIV /
AIDS. Support is provided by assistance with medical needs, housing, and social
services to improve the quality of life of our clients. EMAN provides support groups,
and extensive resource library, and educational services, as well as a food pantry.
EMAN is also a testing site.
ƒ
The Horizon Program, 9 Green St., Ground Floor, Augusta, ME 04330. (207) 6213785 (Michael Kristan or Kim Hoak). Interpreters available. Horizon serves
Franklin, Kennebec, Somerset, Lincoln, Waldo, Knox and Sagadahoc counties. Their
84
mission is to provide quality, compassionate and comprehensive medical and social
services to all identified HIV-positive individuals in central Maine. They are based
out of Maine General's Gardiner Campus and provide: clinic for medical services and
interaction with healthcare professionals, case Management for people living with
HIV/AIDS, educational programs and community outreach, and counseling and
support for people infected and affected by HIV/AIDS.
ƒ
Down East Aids Network, 25 Pine St., Suite A., Ellsworth, ME 04605. (207) 6673506. English and Spanish spoken. http://downeastaidsnetwork.homestead.com.
DEAN offers ongoing emotional support to HIV positive people and their families in
Washington and Hancock Counties, providing support groups and retreats, referrals to
primary care physicians, infectious disease specialists, substance abuse counseling,
stress management, HIV dentistry and medical assistance, classes in alternative
therapies, Food Pantry services supported by funds from the U.S. Post Office annual
food drive and from local donations, and financial assistance with a focus on living
with HIV/AIDS. DEAN is also a testing site.
Each agency varies slightly but they all offer case management and financial
emergency assistance. They also offer or can direct you to educational seminars on
HIV, support groups and counseling.
A Note about Housing:
The agencies listed above can all help with questions about and referrals for housing.
You or your client can also contact:
ƒ
Preble Street Resource Center. 15 Portland Street, P.O. Box 1459, Portland, ME
04104. (207) 874-6560. Spanish spoken & interpreters available. Preble Street
provides a primary contact point for the many of Portland's homeless and low-income
people, a free breakfast program, assistance with housing and other issues, food
pantry, and more.
85
SUPPORT SERVICES: SUPPORT GROUPS, HOTLINES
& MENTAL HEALTH
You can call 211
for assistance locating mental health and other types of resources in Maine.
If you are calling from outside of Maine dial 1-877-463-6207.
For a list of Mental Health Providers listed by county, go to:
www.maine.gov/dhhs/mh/providers/index.html
Who can I talk to about this?
Finding out you have HIV is a life-changing event. You may feel anxious, irritable,
jumpy or scared. It is normal to be angry—at yourself for taking risks; at the person you
believe may have infected you; at the world. One of the most important things you can do
is to find someone to talk to. Here are some options.
ƒ Support groups of people living with HIV are helpful for many people. Being with
others who are dealing with the same things can help you feel less alone. You may
also learn new information about treatments and services. Contact the AIDS Service
Organizations listed above to find a support group.
ƒ Talk with a counselor. This is a safe way to share your feelings, and may help you
see the issues more clearly. To find a counselor, see the list below.
ƒ Call a hotline (telephone help service). Hotline calls are confidential and
anonymous. You can talk to them about everything without them even knowing who
you are. For hotline phone numbers, see the list below.
ƒ You can also call 211 for assistance locating mental health and other types of
resources in Maine. If you are calling from outside of Maine dial 1-877-463-6207.
Counselors and Mental Health Services:
ƒ Maine Statewide Crisis Hotline, 1-888-568-1112.
ƒ Sweetser, 1-800-434-3000 (offices located statewide). Interpreters available.
ƒ Acadia Hospital, 268 Stillwater Ave. Bangor, ME. 1-800-640-1211.
ƒ Tri-County Mental Health Services, 415 Rodman Rd., Auburn, ME 04210 (offices
located statewide). (207) 784-4110.
ƒ Community Health and Counseling Services, 42 Cedar St., Bangor, ME 04401
(offices located statewide). (207) 947-0366.
Hotlines (Telephone Help):
ƒ For information on HIV/AIDS: 1-800-232-4636
ƒ The Trevor Project (in dealing with GLBTI issues): 1-866-488-7386
If you ever feel at a complete loss and don’t know what to do, go to an Emergency
Room or call the Maine Statewide Crisis Hotline at 1-888-568-1112 or the National
Hopeline Center at 1-800-784-2433. English and Spanish spoken.
86
SUPPORT SERVICES: DOMESTIC VIOLENCE
Who can I talk to if I don’t feel safe at home?
Domestic Violence programs and hotlines provide support and assistance to anyone who
faces violence, threats or abuse at home or from a partner. These programs can help with
crisis intervention, safety planning, information about domestic violence and referrals to
local service providers. Domestic Violence programs and hotlines in Maine are listed
below. All services are confidential and are available to everyone, including people in
same-sex relationships, males, teens, people with disabilities and immigrants.
ƒ
The National Domestic Violence Hotline, 1-800-799-7233 or the statewide hotline
at 1-866-834-HELP. Spanish available.
ƒ
Abused Women’s Advocacy Project, 24-hour hotline 1-800-559-2927 or (207) 7954020. www.awap.org
ƒ
Battered Women’s Project, 1-800-439-2323 (24-hour hotline) or (207) 532-4004
(8am -4pm). www.batteredwomensproject.org
ƒ
Caring Unlimited, 1-800-239-7298 (24-hour hotline) or (207) 324-1802.
www.caring-unlimited.org
ƒ
Family Crisis Services, 1-800-537-6066 or (207) 874-1973. www.familycrisis.org
ƒ
Family Violence Project, 1-877-890-7788 (24-hour hotline) or (207) 623-3569.
Interpreters available. www.familyviolenceproject.org
ƒ
New Hope For Women, 1-800-522-3304 (24-hour hotline).
www.newhopeforwomen.org
ƒ
Spruce Run, 1-800-863-9909 (24-hour hotline) or (207) 947-0496. Interpreters
available. www.sprucerun.net
ƒ
The Next Step, Hancock County, 1-800-315-5579 (24-hour hotline) or Washington
County, 1-888-604-8692. Interpreters available.
ƒ
Womancare, 1-888-564-8165. www.wmncare.org
ƒ
The Trevor Project (for gay, lesbian, bisexual and transgender youth), 1-866488-7386 (24-hour hotline). English and Spanish spoken.
www.thetrevorproject.org/home2.aspx
87
SUPPORT SERVICES: SUBSTANCE ABUSE
I think I have a substance abuse problem. What should I do?
The important thing is to find the right level of care for you. Maine has teen and adult
substance abuse treatment programs, and many levels of care, including detox,
residential, intensive outpatient, and partial hospital programs. Call any program for a
telephone screening to see if the program is the right level for you. If not, they will refer
you to another program that can better meet your needs.
Even if you don’t have health insurance, you may be able to get care. Many programs are
funded by the Maine Department of Health and Human Services to provide services to all
who are eligible based on total household income. Ask your HIV case manager or social
worker about other programs that may be able to help you to pay for substance abuse
treatment.
Here are some options for substance abuse information and services:
ƒ You can call 211 for assistance locating substance abuse resources in Maine. If you
are calling from outside of Maine dial 1-877-463-6207.
ƒ Alcoholics Anonymous Hotline: (800) 737-6237. www.aamaine.org
ƒ Narcotics Anonymous Hotline: (800) 974-0062. www.namaine.org
How can I prevent the spread of HIV infection through needle sharing?
The safest thing is never to share your needles with others. If you must share, clean your
needles with bleach and water. There are four needle exchange programs in the state.
You may trade in your used needles for clean ones at these sites:
ƒ HealthReach Harm Reduction, Next Step Needle Exchange, 9 Green St.,
Augusta, ME 04330. (207) 621-3793.
ƒ Down East AIDS Network, 25 Pine St., Suite A., Ellsworth, ME 04605. (207) 6673506.
ƒ Eastern Maine AIDS Network, P.O. Box 2038, 370 Harlow St., Bangor, ME 04402.
(207) 990-3626.
ƒ Portland Public Health, 103 India St., Portland, ME 04101. (207) 874-8446.
For a longer list of Substance Abuse Treatment Providers, go to:
www.maine.gov/dhhs/osa/help/directory.htm
and search for the specific services needed.
88
SUPPORT SERVICE:
ADDITIONAL SPECIALTY SUPPORT
How do I find support specific to me?
Anyone can become HIV positive. There are many, many different “me’s”— HIV affects
people of all genders, all skin colors, all sexualities, with any amount of money, from all
countries and of all ages. You can talk to your doctor, a social worker, a case manager or
any of the agencies listed in this guide to help you find the support you need.
Where can I find information about HIV?
You can go to your local library for free internet access. The internet has a huge amount
of HIV information, some good and some not-so-good. Here are some websites and
phone numbers that may be helpful to you:
ƒ Resource site for HIV positive people: www.thebody.com. The Body is an AIDS
and HIV information resource web site that offers chat rooms, references services,
on-line libraries, and links to other information sources.
ƒ Resource for people living with HIV/AIDS in Maine: www.positiveme.org.
ƒ Federal HIV/AIDS information and resources: www.aids.gov.
ƒ The Maine Department of Health and Human Services:
www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm.
ƒ National Centers for Disease Control and Prevention: www.cdc.gov/hiv, Health
Information Hotline: (800) CDC-INFO or 1-800-232-4636. English and Spanish
spoken.
ƒ Project Inform: www.projectinform.org, 1-800-822-7422.
ƒ National Minority AIDS Council: www.nmac.org, (202) 483-6622. English and
Spanish spoken.
ƒ The Trevor Project (in dealing with GLBTI issues): www.thetrevorproject.org, 1866-488-7386.
ƒ Deserve to Know website for MSM: www.deservetoknowme.org.
ƒ Social Network and Info for HIV positive people: www.patientslikeme.com.
More National and Web-based Support Resources:
ƒ
AEGiS (AIDS Education Global Information System), www.aegis.com. AEGiS
offers a comprehensive web site that provides information on the basics of HIV
treatment, and links to a wide variety of organizations and media sources.
ƒ
AIDS Vaccine Advocacy Coalition, www.AVAC.org.
ƒ
The Black AIDS Institute, www.blackaids.org.
89
ƒ
The Centers for Disease Control (CDC) also maintains a database of over 19,000
service organizations in the United States dealing with HIV/AIDS, tuberculosis, and
sexually transmitted diseases. You can search this database on the internet at
www.cdcnpin.org/scripts/locates/LocateOrg.asp.
ƒ
Henry J. Kaiser Family Foundation, www.kff.org/hivaids/index.cfm. The Kaiser
Family Foundation (KFF) is a non-profit, private operating foundation focusing on
the major health care issues facing the nation. The Foundation is an independent
voice and source of facts and analysis for policymakers, the media, the health care
community, and the general public.
ƒ
HIV General Info, www.managinghiv.com.
ƒ
HIV InSite (University of California at San Francisco), http://hivinsite.ucsf.edu.
The HIV InSite, operated by the University of California at San Francisco (UCSF),
has sections on the medical, prevention, policy, and statistics related to HIV and
AIDS. Its AIDS Knowledge Base is an on-line textbook on AIDS.
ƒ
HIV Vaccine Campaign, www.Bethegeneration.org.
ƒ
Informational site for a wide range of HIV/AIDS questions, www.aidsinfonet.org.
ƒ
National Association of People With AIDS (NAPWA), Silver Spring, MD. (240)
247-0880. www.napwa.org.
ƒ
National HIV/AIDS Treatment Infoline, 1-800-822-7422.
ƒ
National Native American AIDS Prevention Center (NNAAPC), (510) 444-2051.
www.nnaapc.org.
ƒ
Social Security Administration, Benefits for People living with HIV/AIDS:
www.ssa.gov/pubs/10019.html. English and Spanish spoken.
ƒ
Statehealthfacts.org (Kaiser Family Foundation), http://www.statehealthfacts.org.
This resource allows site visitors to compare HIV/AIDS state statistics on new and
cumulative AIDS cases, AIDS case rates, persons living with AIDS, AIDS deaths,
HIV infections, HIV testing statistics and policies, additional AIDS-related state
policies, Ryan White funding and funding for HIV prevention, and AIDS Drug
Assistance Programs, including budget, client, and expenditure data.
ƒ
Women Responding to Life-Threatening Diseases (WORLD), Oakland, CA. (510)
986-0340. www.womenhiv.org.
90
RIGHTS & RESPONSIBILITIES
VI.
RIGHTS & RESPONSIBILITIES
a. Disclosure, HIV Testing and the Law
b. Children and Legal Issues for Minors
c. Legal Issues for Non U.S. Citizens
91
92
105
109
Appendices:
¾ AIDS InfoNet. Telling Others You’re HIV-Positive: Fact Sheet Number 204.
January 10, 2006. Available at: www.aidsinfonet.org. Accessed
December 2006.
¾ Maine Centers for Disease Control and Prevention. Disease Intervention
Specialists and Partner Counseling and Referral Services. Maine: Maine
CDC; 2008.
¾ Maine Centers for Disease Control and Prevention. An Act To Improve
Access to HIV Testing in Health Care Settings. Maine: Maine CDC;
2008. Available at: http://www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm.
Accessed March 2008.
¾ Maine Department of Health and Human Services. Maine Mandatory
Reporting Law and Procedure. Maine: DHHS; 2007.
¾ State of Maine. Release of Records Law. Maine: 2006.
¾ Ferri J, Roose R and Schwendeman J. A Note to Teens Who Have Just
Learned They Are HIV-Positive. In: Learning to Live with HIV, 2nd
Edition. Available at: www.thebody.com/hivco/teens.html. Accessed
November 2006.
¾ State of Maine. Treatment of Minors (for Doctors). Maine: 2006.
¾ State of Maine. Treatment of Minors. Maine: 2006.
¾ The National Immigration Project and SF AIDS Foundation. Basic Rules of
Working with Noncitizens Living with HIV/AIDS. In: HIV/AIDS and
Immigrants: A Manual for HIV/AIDS Service Providers. 2004. Available
at: www.nationalimmigrationproject.org. Accessed November 2006.
¾ Lambda Legal and Immigration Equality. HIV and Immigration: The Basics.
2005. Available at: www.immigrationequality.org. Accessed November
2006.
91
RIGHTS & RESPONSIBILITIES:
DISCLOSURE, HIV TESTING & THE LAW
Are my HIV test results confidential?
Under Maine law the privacy of your HIV test results is protected. The law states that:
“Confidentiality policy: Health care providers and others with access to medical records
containing HIV infection status information shall have a written policy providing for
confidentiality of all patient information consistent with this chapter. That policy must
require, at a minimum, action consistent with disciplinary procedures for violations of the
confidentiality policy.”
No one may disclose the results of an HIV test without the written permission of the
patient.
Steps to keep HIV test records private include:
ƒ The Maine Center for Disease Control and Prevention has a strict privacy policy.
ƒ Training on this policy is mandated for all Maine CDC staff and access to HIV
information is limited to only the AIDS Drug Assistance Program Coordinator, HIV
surveillance staff and the Ryan White Coordinator.
Maine Center for Disease Control and Prevention requires that all confidential positive
HIV test results be reported with patient name. This information is kept entirely
confidential. Patients testing HIV positive at anonymous HIV test sites are reported to
Maine CDC with a patient code that maintains their anonymity.
More on Maine Law & HIV
In September 2007, changes in Maine HIV testing law went into effect. “An Act to
Improve Access to HIV Testing in Health Care Settings,” was passed by the Maine State
Legislature in an effort to make HIV testing a routine part of health care as recommended
by the U. S. Center for Disease Control and Prevention (CDC) in 2006.
Maine’s revised law removes the need to have separate written consents for an HIV test
and eliminates the requirement of pretest prevention counseling. Removing these barriers
is recommended by the U.S. CDC in order to make HIV testing more routine.
The Maine Center for Disease Control and Prevention (Maine CDC) strongly encourages
health care providers to explore incorporating HIV testing as a routine practice in their
setting. Information about the HIV testing recommendations, the changes in Maine HIV
testing law, and useful informational resources were developed jointly by the Maine
CDC, the Maine Medical Association and other health care groups.
92
Who do I have to tell?
Telling someone else that you are HIV positive can be very difficult, and there are many
things to consider when telling another person. Wait until you feel ready before you tell
others you have HIV. You do not have to tell your employer, school, or your friends and
family. Whomever you do tell, be sure that you trust them to support you. It’s good idea
to remind them that it is up to you to tell others (not them). It may take people time to
accept the news.
For anyone who may have been unknowingly put at risk (for example, previous or
current sexual partners) it is important to inform them so that they can get tested. Here
are some options for doing this:
ƒ Tell the person yourself. Your social worker or doctor can give you some ideas for
how to do this.
ƒ Bring the person to your doctor’s office. You can tell them there and your social
worker or doctor can answer questions. You may call the Family Planning
Association of Maine for further assistance at 1-877-326-2345.
ƒ The state of Maine offers Partner Counseling and Referral Services to people
testing positive for HIV and STD’s. Call (207) 287-3747. This is a state program
that will inform the individuals at risk, without telling them your name.
ƒ If you face domestic violence, telling a partner your HIV status may put you at even
greater risk. Talk to your doctor about this issue. For more information about keeping
yourself safe, contact 1-866-834-HELP.
Do I have to tell my employer? Landlord? School Teacher?
No, you do not have to tell your employer, landlord or teacher —it’s up to you. Take your
time to decide who to tell and how you will approach them. Be sure you’re ready and that
you have support, whatever the person’s reaction is. There are laws that protect people
with HIV from discrimination in employment, housing and education.
You may want to tell your employer if your HIV illness or treatments interfere with your
job performance. If you want to tell your employer, but are worried about their reaction
or your job security, talk to your provider or case manager first. If you do decide to tell
your employer, make sure they understand that they must keep your HIV status
confidential.
If you apply for a new job, employers are not allowed to ask about your health or any
disabilities. Legally, they can only ask if you have any condition that would interfere with
the main job tasks. If you have legal questions related to your HIV, you can contact:
ƒ GLAD Legal Information Infoline, 1-800-455-GLAD (4523). English and Spanish
spoken.
ƒ Pine Tree Legal Assistance, (207) 774-8211. Pine Tree Legal Assistance has offices
in a number of areas throughout the state. You can call this number for help locating
the office near you, or look online at www.ptla.org. Interpreters available for a
number of languages, including Spanish and Somali.
93
AIDS InfoNet
www.aidsinfonet.org
Fact Sheet Number 204
TELLING OTHERS YOU’RE HIV-POSITIVE
WHAT ARE THE ISSUES?
When you test positive for HIV, it can
be difficult to know who to tell about it,
and how to tell them.
•
Accept the reaction. You can’t
control how others will deal with
your news.
SPECIAL SITUATIONS
Telling others can be good because:
• You can get love and support to
help you deal with your health.
• You can keep your close friends
and loved ones informed about
issues that are important to you.
• You don’t have to hide your HIV
status.
• You can get the most appropriate
health care.
• You can reduce the chances of
transmitting the disease to others.
• In many states, you can be found
guilty of a felony for not telling a
sexual partner you are HIV-positive
before having intimate contact.
Telling others may be bad because:
• Others may find it hard to accept
your health status.
• Some people might discriminate
against you because of your HIV.
• You may be rejected in social or
dating situations.
You don’t have to tell everybody.
Take your time to decide who to tell and
how you will approach them. Be sure
you’re ready. Once you tell someone,
they won’t forget you are HIVpositive.
GENERAL GUIDELINES
Here are some things to think about
when
you’re
considering
telling
someone that you’re HIV-positive:
• Know why you want to tell them.
What do you want from them?
• Anticipate their reaction. What’s
the best you can hope for? The
worst you might have to deal with?
• Prepare by informing yourself
about HIV disease. You may want
to leave articles or a hotline phone
number for the person you tell.
• Get support. Talk it over with
someone you trust, and come up
with a plan.
People You May Have Exposed to
HIV: It can be very difficult to disclose
your status to sexual partners or people
you shared needles with. However, it is
very important that they know so they
can decide to get tested and, if they test
positive, get the health care they need.
The Department of Health can tell
people you might have exposed,
without using your name.
Employers: You may want to tell your
employer if your HIV illness or
treatments interfere with your job
performance. Get a letter from your
doctor that explains what you need to
do for your health (taking medications,
rest periods, etc.). Talk with your boss
or personnel director. Tell them you
want to continue working, and what
changes may be needed in your
schedule or workload. Make sure they
understand if you want to keep your
HIV status confidential.
People with disabilities are protected
from job discrimination under the
Americans with Disabilities Act (ADA).
As long as you can do the essential
functions of your job, your employer
cannot legally discriminate against you
because of your HIV status. When you
apply for a new job, employers are not
allowed to ask about your health or any
disabilities. They can only legally ask if
you have any condition that would
interfere with essential job functions.
Family Members: It can be difficult to
decide whether to tell your parents,
children, or other relatives that you are
HIV-positive. Many people fear that
their relatives will be hurt or angry.
Others feel that not telling relatives will
weaken their relationships and may
keep them from getting the emotional
support and love that they want. It can
be very stressful to keep an important
secret from people you are close to.
Family members may want to know
how you were exposed to HIV. Decide if
or how you will answer questions about
how you got infected.
Your relatives may appreciate knowing
that you are getting good health care,
that you are taking care of yourself, and
about your support network.
Health Care Providers: It’s your
decision whether or not to tell a health
care provider that you have HIV. If your
providers, including dentists, know you
have HIV, they should be able to give
you more appropriate health care. All
providers should protect themselves
from diseases carried in patients’ blood.
If providers are likely to come in contact
with your blood, you can remind them to
put gloves on.
Social Contacts: Dating: can be very
threatening for people with HIV. Fear of
rejection keeps many people from
talking about their HIV status.
Remember, every situation is different
and you don’t have to tell everybody. If
you aren’t going to be in a situation
where HIV could be transmitted, there’s
no need to tell. Sooner or later in a
relationship, it will be important to talk
about your HIV status. The longer you
wait, the more difficult it gets.
An HIV-Positive Child’s School: It is
best to have good communication about
your child’s HIV status. Meet with the
principal and discuss the school’s policy
and attitude on HIV. Meet with the
nurse and your child’s teacher. Be sure
to talk about your child’s legal right to
confidentiality.
GETTING HELP
You can get help with telling others
about your HIV status from the
counselors at the HIV anonymous test
sites, or your HIV case manager.
Revised April 12, 2007
A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine
Fact Sheets can be downloaded from the Internet at http://www.aidsinfonet.org
This Fact Sheet is sponsored by the US Food and Drug Administration (FDA)
DISEASE INTERVENTION SPECIALISTS AND PARTNER COUNSELING
AND REFERRAL SERVICES
Disease Intervention Specialists
Disease Intervention Specialists (DIS) are State of Maine funded field workers federally trained in STD/HIV
Epidemiology, taking sexual histories, informing exposed contacts and referring them for examination and
treatment. They provide individualized health education and risk reduction counseling to at-risk individuals
focusing on HIV/STD prevention. DIS serve in several locations throughout Maine. To request DIS assistance
call the HIV, STD, and Viral Hepatitis Program at 287-2046 or the DIS in your area (see local DIS listed
below).
Partner Counseling and Referral Services
Partner Counseling and Referral Services (PCRS) is an important service by DIS, and has been used as a public
health approach in the U.S. to control STDs since the 1940’s. Identifying, testing and treating the partners of
those already infected with HIV/STD allows us to provide needed services to those at-risk, and helps to prevent
further disease transmission.
The PCRS process is initiated when the Maine HIV, STD and Viral Hepatitis Program receives a disease report
for early syphilis, chlamydia, gonorrhea or HIV. The DIS locates and interviews the patient, then ensures
partners are contacted and offered testing and treatment where appropriate. During this process, patient and
partner confidentiality is of primary importance. During PCRS, DIS focus on:
•
Providing the patient with accurate education about his/her disease and behavior modifications to
prevent re-infection;
•
Establishing a contract with the patient to ensure exposed partners are promptly offered examination and
treatment;
•
Locating and notifying exposed partners and coordinating their medical follow-up;
•
Interruption of disease transmission and/or disease progression.
•
HIV/STD prevention activities
DIS may interview all persons either treated for or recently exposed to notifiable conditions or diseases;
however, participation in PCRS is voluntary and confidential.
DISEASE INTERVENTION SPECIALIST LISTED BY COUNTY:
York, Cumberland
Cynthia Chiang and Kim Meehan-Brown
756-8084
756-8086
Androscoggin, Franklin, Oxford
Licia Lima
795-4019
Kennebec, Knox, Lincoln, Sagadahoc,
Somerset, Waldo
Sarah Elie
795-4019
Aroostook, Hancock, Penobscot, Piscataquis,
Washington
Elizabeth Ogbonna
947-0700
LD 429, item 1, 123rd Maine State Legislature
An Act To Improve Access to HIV Testing in Health Care Settings
PLEASE NOTE: Legislative Information cannot perform research, provide legal
advice, or interpret Maine law. For legal assistance, please contact a qualified attorney.
An Act To Improve Access to HIV Testing in Health Care Settings
Be it enacted by the People of the State of Maine as follows:
Sec. 1. 5 MRSA §19203-A, as amended by PL 1999, c. 429, §3, is further amended to read:
§ 19203-A. Voluntary informed consent required
1. Individual tested. Except as provided in this section and section 19203, subsections 4
and 5, no person may perform an HIV test without first obtaining the written informed consent of the
person to be testedan HIV test must be voluntary and undertaken only with a patient's knowledge and
understanding that an HIV test is planned. A patient must be informed orally or in writing that an HIV test
will be performed unless the patient declines. Oral or written information required to be given to a patient
under this subsection must include an explanation of what an HIV infection involves and the meaning of
positive and negative test results. Informed consent is not required for repeated HIV testing by health care
providers to monitor the course of established infection. Anonymous test sites under section 19203-B are
exempt from the requirement that the informed consent be in writing.
2. Insurers. Persons required to take an HIV test by an insurer, nonprofit hospital or medical
service organization or nonprofit health care plan must provide their written informed consent on
forms approved by the Superintendent of Insurance. Pretest and post-testIf the test is positive, post-test
counseling must be provided by the person or organization requesting the test. The Superintendent of
Insurance may promulgateadopt rules to define language requirements of the form.
3. Access to medical care. NoA health care provider may not deny any person medical treatment
or care solely for refusal to give consent for an HIV test. NoA health care provider may not request
a person's written consent to an HIV test as a precondition to the provision of health care. All written
consent to testing shallmust be in accordance with section 19201, subsection 5-A. Nothing in thisThis
section maydoes not prohibit a health care provider from recommending an HIV test for diagnostic or
treatment purposes. NoA physician or other health care provider may beis not civilly liable for failing
to have an HIV test performed for diagnostic or treatment purposes if the test was recommended and
refused in writing by the patient.
4. Occupational exposure. Consent need not be obtained when a bona fide occupational
exposure creates a significant risk of infection provided thatif a court order has been obtained under
section 19203-C. The fact that an HIV test was given as a result of an occupational exposure and the
results of that test may not appear in any records of the person whose blood or body fluid is the source of
the exposure. Pretest and post-testIf the test is positive, post-test counseling must be offered. The subject
of the test may choose not to be informed about the result of the test.
LR 1512, item 1, Document created 3/14/2007 16:58., page 1.
LD 429, item 1, 123rd Maine State Legislature
An Act To Improve Access to HIV Testing in Health Care Settings
4-A. Occupational exposure in health care setting. When a bona fide occupational
exposure occurs in a health care setting, authorization to test the source patient for HIV must be obtained
from that patient if the patient is present or can be contacted at the time of exposure and is capable of
providing consent. At the time of exposure, if the source patient is not present and can not be contacted
or is incapacitated, then any reasonably available member of the following classes of individuals, in
descending order of priority, may authorize an HIV test on a blood or tissue sample from the source
patient:
A. The patient's legal guardian;
B. An individual known to have power of attorney for health care for the patient;
C. An adult relative, by blood, marriage or adoption;
D. An adult with whom the patient has a meaningful social and emotional relationship; and
E. A physician who is familiar with occupational exposures to HIV.
The individual authorizing the HIV test must be informed of the nature, reliability and significance of
the HIV test and the confidential nature of the test.
If the person contacted for authorization refuses to authorize the test, the test may not be conducted unless
consent is obtained from the source patient or from the court pursuant to section 19203-C.
This subsection does not authorize a person described in paragraphs A to D to receive the test result.
Test results must be given to the exposed person, to a personal physician if designated by the exposed
person and to either the physician who authorizes the test or the health care provider who manages the
occupational exposure.
The patient may choose not to be informed about the result of the HIV test. Without express patient
authorization, the results of the HIV test and the fact that an HIV test was done as a result of an
occupational exposure in a health care setting may not appear in the patient's health care records. The
exposed individual's occupational health care record may include documentation of the occupational
exposure and, if the record does not reveal the source patient's identity, the results of the source patient's
HIV test.
5. Exposure from sexual crime. Consent need not be obtained when a court order has been
issued under section 19203-F. The fact that an HIV test was given as a result of the exposure and the
results of that test may not appear in a convicted offender's medical record. Counseling on risk reduction
must be offered, but the convicted offender may choose not to be informed about the result of the test
unless the court has ordered that the convicted offender be informed of the result.
Sec. 2. 5 MRSA §19204-A, as amended by PL 2001, c. 647, §§1 to 3, is further amended
to read:
LR 1512, item 1, Document created 3/14/2007 16:58., page 2.
LD 429, item 1, 123rd Maine State Legislature
An Act To Improve Access to HIV Testing in Health Care Settings
§ 19204-A. Counseling new HIV cases
Except as otherwise provided by this chapter, persons who are the subjects oftest positive for HIV
testsinfection must be offered pretest and post-test counseling. Persons who are authorized by section
19203-C or 19203-F to receive test results after exposure must be offered counseling regarding the
nature, reliability and significance of the HIV test and the confidential nature of the test. Persons offered
counseling under this section may decline the offer by signing a waiver stating that counseling has been
offered and is being declined.
1. Pretest counseling.
"Pretest counseling" must include:
A. Face-to-face counseling that includes, at a minimum, a discussion of:
(1) The nature and reliability of the test being proposed;
(2) The person to whom the results of the test may be disclosed;
(3) The purpose for which the test results may be used;
(4) Any reasonably foreseeable risks and benefits resulting from the test; and
(5) Information on good HIV preventive practices and HIV risk reduction plans; and
B. An entry in the medical record of the person being counseled summarizing the contents of
the discussion concerning at least the topics listed in paragraph A, subparagraphs (1) to (5). A
written informed consent form may be used to satisfy the requirement in this paragraph if it contains
all the required information. A written consent form does not satisfy the requirement for personal
counseling in paragraph A.
The provider of an HIV test may offer group pretest counseling, but individual counseling must be
provided if the subject of the test requests it.
2. Post-test counseling. "Post-test counseling" must include:
A. Personal counseling that includes, at a minimum, a discussion of:
(1) The test results and the reliability and significance of the test results. The test provider shall
communicate the result confidentially and through personal contact;
(3) Information on good preventive practices and risk reduction plans; and
LR 1512, item 1, Document created 3/14/2007 16:58., page 3.
LD 429, item 1, 123rd Maine State Legislature
An Act To Improve Access to HIV Testing in Health Care Settings
(4) Referrals for medical care and information and referrals for support services, including
social, emotional support and legal services, as needed;
B. An entry in the medical record of the person being counseled summarizing the contents of the
discussion; and
C. The offer of face-to-face counseling. If the subject of the test declines, the provider of the test
may provide an alternative means of providing the information required by paragraph A.
5. Written information to person being counseled. To comply with the requirements
of this section regarding pretest counseling, in addition to meeting the requirements of subsection 1,
the provider of an HIV test shall give to the person being counseled a written document containing
information on the subjects described in subsection 1, paragraph A. To comply with the requirements
of this section regarding post-test counseling, in addition to meeting the requirements of subsection 2,
the provider of an HIV test shall give to the person being counseled a written document containing
information on the subjects described in subsection 2, paragraph A. A written consent form or other
document may be used to meet one or both of the requirements for information pursuant to this subsection
if the form or document contains all the information required for the type of counseling being offered.
SUMMARY
This bill amends HIV testing law by replacing the requirement for obtaining a patient's written
informed consent before an HIV test to requiring a test be undertaken only with a patient's knowledge
and understanding that an HIV test is planned, by removing the requirement for pretest counseling and
by requiring that a positive test result must be confidentially given through personal contact.
LR 1512, item 1, Document created 3/14/2007 16:58., page 4.
Maine Mandatory Reporting Law and Procedure
The following adult persons shall immediately report or cause a report to be made to the
Department of Health and Human Services (DHHS) when the person knows or has reasonable
cause to suspect that a child has been or is likely to be abused or neglected: an allopathic or
osteopathic physician, resident or intern; emergency medical services person; medical examiner;
physician's assistant; dentist, dental hygienist or dental assistant; chiropractor; podiatrist; registered
or licensed practical nurse; teacher; guidance counselor; school official; children's summer camp
administrator or counselor; social worker; court-appointed special advocate or guardian ad litem for
the child; homemaker; home health aide; medical or social service worker; psychologist; child care
personnel; mental health professional; law enforcement official; state or municipal fire inspector;
municipal code enforcement official; commercial film and photographic print processor; clergy
member acquiring the information as a result of clerical professional work except for information
received during confidential communications; any person affiliated with a church or religious
institution who serves in an administrative capacity or has otherwise assumed a position of trust or
responsibility to the members of that church or religious institution, while acting in that capacity;
chair of a professional licensing board that has jurisdiction over mandated reporters; a humane
agent employed by the Department of Agriculture, Food and Rural Resources; or any other person
who has assumed full, intermittent or occasional responsibility for the care or custody of the child,
whether or not the person receives compensation. 22 M.R.S.A. §4011-A.
Those required to report must also make a prenatal exposure to drugs report “when a health care
provider involved in the delivery or care of an infant who the provider knows or has reasonable
cause to suspect has been born affected by illegal substance abuse or is suffering from withdrawal
symptoms resulting from prenatal drug exposure, whether or not the prenatal exposure was to legal
or illegal drugs.” 22 M.R.S.A. §4011-B.
Abuse or Neglect is defined as a “threat to a child’s health or welfare by physical, mental or
emotional injury or impairment, sexual abuse or exploitation, deprivation of essential needs or lack
of protection from these, by a person responsible for the child.”
What is the process for reporting?
Call Central Intake at the Department of Health and Human Services (DHHS):
1.800.452.1999
Whenever a person is required to report in a capacity as a member of the staff of a medical or public
or private institution, agency or facility, that person immediately shall notify either the person in
charge of the institution, agency or facility or a designated agent who then shall cause a report to be
made. The staff also may make a report directly to the department.
In those cases where the suspected perpetrator of abuse is an individual who is not responsible for
the child, then the report must be made to the appropriate District Attorney’s Office. Abuse is
defined above as being behavior by a person responsible for the child, and no additional definition
is provided for this section. It is likely, however, that the definition of abuse would be the same as
that listed above, except that the person to be reported is not one who is responsible for the child.
What if I learned about the abuse during a confidential interaction?
Nearly all professionals are faced with the ethical question, “Does my obligation to confidentiality
outweigh my obligation to prevent harm to others?”
Confidentiality means to hold information in trust and to share it with others only in the interest of
the person involved…or in order to protect others from harm by them. It is not intended to protect
abusers from being held accountable for their actions or to keep them from getting the help that they
need.1 Consider the consequences of failing to report; it most certainly means that the abuse will
continue.
How can I report the abuse without destroying the helping relationship I have developed with
the person who told me?
Service providers typically learn about child abuse from the abused child, a protective (nonabusing) parent, or other significant adult in the child’s life. Their dilemma is far greater than that
of the professional, since they will live with the consequences of whatever action follows their
disclosure. The child/ren involved have been made to fear the consequences of revealing this
behavior and feel responsible for what happens as a result. A protective parent may fear for his or
her life, should the perpetrator find out that the abuse has been disclosed.
To strengthen the helping relationship, tell the person that a report must be made, have an open
discussion and talk about what will happen next. The helping professional may be able to provide
support for the child and protective adult through the process of investigation and later action. The
professional could also encourage the person to call DHHS to report/talk over the situation.
Do I have any obligation to report abuse of an adult?
There is no State of Maine mandate to report adult victims of domestic violence or sexual assault.
Gunshot wounds should be reported to a law enforcement officer within 24 hours if treated by a
licensed physician. 17-A M.R.S.A. §512. However, certain persons must immediately report to
DHHS when the person has reasonable cause to suspect that an incapacitated or dependent adult
has been or is at substantial risk of abuse, neglect or exploitation. The full list of mandated
reporters, including most of those persons listed above with respect to mandated reporting of child
abuse, is available at http://janus.state.me.us/legis/statutes, 22 M.R.S.A. §3477. This report
should be made to Adult Protective Services within DHHS, which has a different intake number:
1-800-624-8404.
What about Privileged or Confidential Communications?
The privileged and confidential nature of many communications is temporarily suspended
(“abrogated” is the legal term) for purposes of required reporting, cooperating with DHHS or a
guardian ad litem in an investigation, or giving evidence in a child protection proceeding. 22
M.R.S.A. §4015. Among other examples listed in the statute, this includes the abrogation of the
physician-patient privilege, the psychotherapist-patient privilege, the confidential nature of
communication to a sexual assault counselor under 16 M.R.S.A. §53-A, the confidential nature of
communication to a domestic violence advocate under 16 M.R.S.A. §53-B , and the confidential
nature of communication to a social worker under 32 M.R.S.A. §7005. Please consult the language
of the statute and legal counsel for a full list and an explanation of the effect of abrogation.2
1
Marie M. Fortune, “Confidentiality and Mandatory Reporting: A Clergy Dilemma?” in Sexual Assault and Abuse: A Handbook for
Clergy and Religious Professionals, Ed. By M.D. Pellauer, B. Chester, and J.A. Boyajian, Harper & Row, 1987.
Handout adapted from “Mandatory Reporting: Thinking About our Obligations” by Francine Stark for the Cross-Disciplinary
Training Project, and by Kate Faragher Houghton.
2
Adapted from information provided by
Janice Stuver, Maine Office of the Attorney General.
How do HIPAA provisions apply?
The privileged and confidential nature of many communications as afforded by the HIPAA Privacy
Rule is also suspended. The federal regulations for the HIPAA Privacy Rule provide that a
provision of state law that provides for the reporting of child abuse will take precedence over
contrary provisions of the HIPAA Privacy Rule. 45 C.F.R. §160.203(2)(c). As a result, State of
Maine statutory provisions mandating reporting of suspected child abuse or prenatal exposure to
drugs take precedence over the general HIPAA Privacy rule requirement of a written authorization
for the disclosure. In other words, the reporting to DHHS is mandated, even in the absence of a
written authorization by the parent or guardian, without violating the HIPAA Privacy Rule.3
NOTE: Memorandum Provided For Informational Purposes
The information in this memorandum is for informational purposes only. Individuals or
agencies should seek advice and guidance from independent legal counsel if they have questions
about their obligations under these laws, and their own professional ethical standards. The Child
and Family Services and Child Protection Act also contains other important provisions regarding
mandated reporting. The full text of the statute should be reviewed, with questions directed to legal
counsel.
For More Information
In 2002, Keeping Children Safe Downeast, in collaboration with the Maine Department of
Human Services, produced “Recognizing and Reporting Child Abuse and Neglect, A Guide For
Mandated Reporters.”
3
Adapted from information provided by Janice Stuver, Maine Office of the Attorney General.
Title 5, §19203-D, Records
The State of Maine claims a copyright in its codified statutes. If you intend to republish
this material, we do require that you include the following disclaimer in your publication:
All copyrights and other rights to statutory text are reserved by the State of Maine. The text included in this publication reflects changes made through
the Second Regular Session of the 122nd Legislature, and is current through December 31, 2006, but is subject to change without notice. It is a
version that has not been officially certified by the Secretary of State. Refer to the Maine Revised Statutes Annotated and supplements for certified text.
The Office of the Revisor of Statutes also requests that you send us one copy of any statutory publication you may produce. Our goal is not to restrict
publishing activity, but to keep track of who is publishing what, to identify any needless duplication and to preserve the State's copyright rights.
PLEASE NOTE: The Revisor's Office CANNOT perform research for
or provide legal advice or interpretation of Maine law to the public.
If you need legal assistance, please contact a qualified attorney.
§19203-D. Records
When a medical record entry is made concerning information of a person's HIV infection status, including the results of an HIV test,
the following apply to the release of that information as a part of the medical record. [1999, c. 512, Pt. B, §4 (ren);
§§5, 6 (aff).]
1. Authorized release. The person who is the subject of an HIV test, at or near the time the entry is made in the medical record,
shall elect, in writing, whether to authorize the release of that portion of the medical record containing the HIV infection status
information when that person's medical record has been requested. A new election may be made when a change in the person's HIV
infection status occurs or whenever the person makes a new election. The release form must clearly state whether or not the person has
authorized the release of that information. The person must be advised of the potential implications of authorizing the release of that
information.
A. When release has been authorized, the custodian of the medical record may release, upon request, the person's medical record,
including any HIV infection status information contained in the medical record. Release of HIV infection status information pursuant
to this paragraph is not a violation of any of the confidentiality provisions of this chapter. [1999, c. 512, Pt. B, §4
(ren); §§5, 6 (aff).]
B. When release has not been authorized, the custodian of the medical record may, upon request, release that portion of the medical
record that does not contain the HIV infection status information. Except as otherwise provided in this section, HIV infection status
information may be released only if the person has specifically authorized a separate release of that information. A general release
form is insufficient. [1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
[1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
2. Authorized disclosure. A medical record containing results of an HIV test may not be disclosed, discoverable or compelled to be
produced in any civil, criminal, administrative or other proceedings without the consent of the person who is the subject of an HIV test,
except in the following cases:
A. Proceedings held pursuant to the communicable disease laws, Title 22, chapter 251; [1999, c. 512, Pt. B, §4
(ren); §§5, 6 (aff).]
B. Proceedings held pursuant to the Adult Protective Services Act, Title 22, chapter 958-A; [1999, c. 512, Pt. B, §4
(ren); §§5, 6 (aff).]
C. Proceedings held pursuant to the child protection laws, Title 22, chapter 1071; [1999, c. 512, Pt. B, §4 (ren);
§§5, 6 (aff).]
D. Proceedings held pursuant to the mental health laws, Title 34-B, chapter 3, subchapter IV, article III; and [1999, c. 512,
Pt. B, §4 (ren); §§5, 6 (aff).]
E. Pursuant to a court order upon a showing of good cause, provided that the court order limits the use and disclosure of records and
provides sanctions for misuse of records or sets forth other methods for ensuring confidentiality. [1999, c. 512, Pt. B,
§4 (ren); §§5, 6 (aff).]
[1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
Text current through December 31, 2006, document created 2006-10-31, page 1.
Title 5, §19203-D, Records
3. Utilization review; research. Nothing in this section may be interpreted to prohibit reviews of medical records for utilization
review purposes by duly authorized utilization review committees or peer review organizations. Qualified personnel conducting scientific
research, management audits, financial audits or program evaluation with the use of medical records may not identify, directly or
indirectly, any individual patient in any report of such research, audit, evaluation or otherwise disclose the identities of persons tested in
any manner.
[1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
4. Access by health care providers. Nothing in this section may prohibit access to medical records by the designated health care
provider of the person who is the subject of an HIV test in accordance with section 19203, subsection 2.
[1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
5. Confidentiality policy. Health care providers and others with access to medical records containing HIV infection status
information shall have a written policy providing for confidentiality of all patient information consistent with this chapter. That policy
must require, at a minimum, action consistent with disciplinary procedures for violations of the confidentiality policy.
[1999, c. 512, Pt. B, §4 (ren); §§5, 6 (aff).]
PL
PL
PL
PL
PL
PL
PL
PL
1987,
1995,
1997,
1997,
1999,
1999,
1999,
1999,
Ch.
Ch.
Ch.
Ch.
Ch.
Ch.
Ch.
Ch.
811, §6 (NEW).
404, §14 (AMD).
793, §B4 (RP ).
793, §B6 (AFF).
3, §4,5 (AFF).
512, §B4 (REN).
512, §B5 (AFF).
790, §A59,60 (AFF).
Text current through December 31, 2006, document created 2006-10-31, page 2.
RIGHTS & RESPONSIBILITIES:
CHILDREN & LEGAL ISSUES FOR MINORS
I’m under 18 years old. What’s different for me?
If you are under 18, and test positive for HIV you or your doctor should contact:
Minors may obtain testing and treatment for HIV and STD’s without parental consent. If
you are under 18, and test positive for HIV you or your doctor can contact:
ƒ Maine Pediatric Specialty Group, 887 Congress St., Suite 320, Portland, ME. (207)
662-5522.
Neither you nor your doctor have to tell your parents at this time. If you are worried that
telling your parent or guardian that you have HIV will put you in danger at home, talk to
your doctor, a case manager or contact: 1-866-834-HELP.
If I have children do they need to be tested?
It’s very hard and frightening to think that your child might be HIV positive. Whether or
not your children need to be tested for HIV depends on a number of different things,
including your children’s ages and at what point you were exposed to HIV. Talk to your
HIV doctor about whether your children may have been infected and should be tested.
The doctor can help you figure out options to get the test done and any support services
you may need. Even if think your child was probably not exposed to HIV, you may still
choose to get them tested for peace of mind.
More on Maine HIV Testing and Minors
Minors may obtain testing and treatment for sexually transmitted infections, including
HIV, without the consent of a parent or guardian.
Minors may also obtain anonymous testing services for HIV at Maine Center for Disease
Control certified anonymous testing sites.
105
Title 32, §3292, Treatment of minors
The State of Maine claims a copyright in its codified statutes. If you intend to republish
this material, we do require that you include the following disclaimer in your publication:
All copyrights and other rights to statutory text are reserved by the State of Maine. The text included in this publication reflects changes made through
the Second Regular Session of the 122nd Legislature, and is current through December 31, 2006, but is subject to change without notice. It is a
version that has not been officially certified by the Secretary of State. Refer to the Maine Revised Statutes Annotated and supplements for certified text.
The Office of the Revisor of Statutes also requests that you send us one copy of any statutory publication you may produce. Our goal is not to restrict
publishing activity, but to keep track of who is publishing what, to identify any needless duplication and to preserve the State's copyright rights.
PLEASE NOTE: The Revisor's Office CANNOT perform research for
or provide legal advice or interpretation of Maine law to the public.
If you need legal assistance, please contact a qualified attorney.
§3292. Treatment of minors
An individual licensed under this chapter who renders medical care to a minor for treatment of venereal disease or abuse of drugs
or alcohol or for the collection of sexual assault evidence through a sexual assault forensic examination is under no obligation to obtain
the consent of the minor's parent or guardian or to inform the parent or guardian of the treatment. This section may not be construed
to prohibit the licensed individual rendering the treatment from informing the parent or guardian. For purposes of this section, "abuse
of drugs" means the use of drugs solely for their stimulant, depressant or hallucinogenic effect upon the higher functions of the central
nervous system and not as a therapeutic agent recommended by a practitioner in the course of medical treatment. [1999, c. 90,
§4 (amd).]
PL
PL
PL
PL
PL
1971,
1973,
1979,
1993,
1999,
Ch.
Ch.
Ch.
Ch.
Ch.
591, §1 (NEW).
145, §3 (RPR).
96, §3 (AMD).
600, §A221 (AMD).
90, §4 (AMD).
Text current through December 31, 2006, document created 2006-11-02, page 1.
Title 32, §2595, Treatment of minors
The State of Maine claims a copyright in its codified statutes. If you intend to republish
this material, we do require that you include the following disclaimer in your publication:
All copyrights and other rights to statutory text are reserved by the State of Maine. The text included in this publication reflects changes made through
the Second Regular Session of the 122nd Legislature, and is current through December 31, 2006, but is subject to change without notice. It is a
version that has not been officially certified by the Secretary of State. Refer to the Maine Revised Statutes Annotated and supplements for certified text.
The Office of the Revisor of Statutes also requests that you send us one copy of any statutory publication you may produce. Our goal is not to restrict
publishing activity, but to keep track of who is publishing what, to identify any needless duplication and to preserve the State's copyright rights.
PLEASE NOTE: The Revisor's Office CANNOT perform research for
or provide legal advice or interpretation of Maine law to the public.
If you need legal assistance, please contact a qualified attorney.
§2595. Treatment of minors
An individual licensed under this chapter who renders medical care to a minor for treatment of venereal disease or abuse of drugs or
alcohol or for the collection of sexual assault evidence through a sexual assault forensic examination is under no obligation to obtain the
consent of the minor's parent or guardian or to inform the parent or guardian of the treatment. Nothing in this section may be construed so
as to prohibit the licensed individual rendering the treatment from informing the parent or guardian. For purposes of this section, "abuse
of drugs" means the use of drugs solely to induce a stimulant, depressant or hallucinogenic effect upon the higher functions of the central
nervous system and not as a therapeutic agent recommended by a practitioner in the course of medical treatment. [1999, c. 90,
§3 (amd).]
PL
PL
PL
PL
PL
PL
1973,
1973,
1973,
1979,
1993,
1999,
Ch.
Ch.
Ch.
Ch.
Ch.
Ch.
374, §1 (NEW).
474, §1 (NEW).
788, §157 (RP ).
96, §2 (AMD).
600, §A188 (AMD).
90, §3 (AMD).
Text current through December 31, 2006, document created 2006-11-02, page 1.
A Note to Teens Who Have Just Learned They Are HIV-Positive - The Body
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A Note to Teens Who Have Just Learned They Are HIV-Positive
1994
This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with
Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.
If you're a teenager who's just learned you're HIV-positive, you may face some stress that adults and children
don't have. You aren't little anymore, but you're not quite an adult yet, either. You may not be very
comfortable with your body, your family, your friends, or your sexuality. There can be a lot of pressure, both
from inside yourself and from people around you. It can be hard to relate to people you've just met, and to
those who've known you a long time but aren't quite sure how to approach you now.
The news that you're HIV-positive can feel like one big thing too many on your plate. It's very common for
young people who learn they are infected to try and make the news "go away" by ignoring it. It can be good
not to let something get to you when you need to be busy living your life. Unfortunately, ignoring HIV can
leave you feeling lonely and depressed; it can also keep you from getting medical attention that can help you
live longer.
A key thing to remember is, you are not alone! There are many other people your age who are going through
the same thing. Telling a friend who will respect your privacy can be a big relief. If you're not ready to tell
anyone you know personally, try talking anonymously to someone at a hotline or HIV service agency, at the
numbers listed throughout this book. There also are support groups out there strictly for teens or people in
their 20's. They're a great place to get information, vent strong emotions, and make new friends.
It may not be as comfortable to approach an adult. However, if you do, you could be very glad you did. An
older person can be your advocate, or help you solve practical problems by lending you money, giving you a
ride or a place to stay, helping you find services that cater to youth, or just being there when you need to talk.
The most important thing is finding someone to hook up with, at least for basic medical care. If you're
worried about the word getting around, make your contact by phone instead of in person. Make sure and ask
whether you can be assured of confidentiality. Your life and future are very precious. Do something good for
yourself by making that first connection.
This article was provided by HIV Coalition (HIVCO). You can find this article online by typing this address
into your Web browser:
http://thebody.com/content/living/art12754.html
4/24/2008 12:17 PM
RIGHTS & RESPONSIBILITIES:
LEGAL ISSUES FOR NON-CITIZENS
What are the legal aspects of being HIV positive for immigrants? Will I
be deported?
The U. S. Department of Homeland Security (DHS) can keep HIV positive non-citizens
out of the United States, keep you from coming back in if you leave, or keep you from
changing your immigration status (to become a permanent resident). DHS can also
remove non-citizens if you entered without government permission. However, DHS can
choose to waive (set aside) some of these rules. To apply for and receive a waiver you
must be in medical care and carefully follow all treatment recommendations. DHS will
request records of all this and will ask your doctor to rate the level of health risk a person
is to citizens of the United States. If you have questions about your citizenship status or
about applying for a waiver, contact an immigration expert. The following non-profit
immigration agency can help guide you:
ƒ
Immigrant Legal Advocacy Project, 201 PO Box 17917, 309 Cumberland Ave.,
Suite 201, Portland, ME 04112. (207) 780-1593. Spanish, French and Somali
spoken; other languages available as well.
109
Basic rules of working with
noncitizens living with HIV/AIDS
Treat noncitizen, HIV positive clients like you would any other client. Get them the
services they need. Assure them that everything they tell you will be kept confidential and that
you will not call the Department of Homeland Security. The difference: Be aware that being a
noncitizen may make it risky for them to get services and do things that a US citizen can do
without risk.
Cultural barriers may make it harder to help noncitizens. Noncitizen clients may not feel
comfortable discussing HIV or sexual orientation with anyone, let alone a stranger. Explore ways to ask
questions about HIV or sexual orientation that allow clients to be more open and trusting. Some
advocates may be homophobic or fear people with HIV/AIDS. Make sure the immigration advocates
working with your clients are comfortable dealing with HIV/AIDS and sexual orientation or transgender
issues. Clients may not realize you will not turn them over to DHS. Assure your clients that you do not
work for DHS and will keep everything they tell you confidential. Clients may not be able to
communicate their fears or concerns in English. Interview them in a language they speak fluently, using
an interpreter who is not related to them.
Ask them whether they have explored all routes to immigration status, including asylum petitions
based on persecution because of HIV status or sexual orientation.
Never tell clients to go to the Department of Homeland Security by themselves. No one should
speak to DHS or go to DHS before talking to an immigration law expert. If noncitizens go to DHS by
themselves, DHS may arrest them and remove them from the United States before they have the chance to
talk to a lawyer.
Noncitizens with HIV should not contact DHS without first discussing their
options with an immigration advocate.
Inform clients that DHS may arrest and detain them. Although it is unlikely that DHS will make
arresting HIV positive noncitizens a high priority, it will remove noncitizens if they entered the country
without permission. DHS may also try to deny returning noncitizens with legal status from reentering the
United States if the agent suspects the noncitizens are HIV positive. Tell your client to be prepared.
Being Prepared
ƒ Carry copies of any immigration documents you have at all times.
ƒ Carry with you the name and phone number of an immigration advocate who will take your call
from DHS detention.
ƒ Before traveling outside the United States, check with an immigration advocate about whether you
will be able to get back in.
ƒ If DHS detains you, demand your right to call your immigration advocate.
ƒ Never sign any DHS documents without first talking to an immigration advocate.
ƒ If DHS turns you back from the border, call your immigration advocate right away. Unless you
challenge the DHS decision, DHS may criminally prosecute you if you enter the United States
again.
5
Work with local immigration advocates. Although this manual will give you some basic
information about immigration status and HIV, you should only use this information to explore your
clients’ options. Do not tell your clients you know what their immigration status is or how they can
change that status. The consequences of providing inaccurate advice can be severe. The severe
consequences of the immigration law mean it is very important that you establish a working relationship
with a local immigrants’ rights agency or practitioner. Your noncitizen clients always should carry with
them the name and telephone number of an immigration advocate or agency that they can call from DHS
detention.
Many immigration advocates do not know how HIV can affect immigration status and may never have
had a client with HIV. They may lack sensitivity to clients with HIV and be unaware of all the options
available to noncitizens with HIV. After reading this manual, you may know more than local immigration
advocates about HIV and immigration. Share this manual with the immigration advocates you consult. If
you do not know immigration advocates in your area who are sensitive to HIV/AIDS issues and know the
options for noncitizens with HIV, call the National Immigration Project of the National Lawyers Guild
(see back cover). Be aware that some fraudulent immigration practitioners prey on the hopes and
desperation of noncitizens.
Tell noncitizens to talk to an immigration expert before they leave the United States. Anyone
who is not a US citizen may be prevented from coming back into the United States if a DHS border
official suspects he or she has HIV. This includes some lawful permanent residents
(people with “green cards”) and applicants for lawful permanent residence who go abroad to pick up
their visas. Some noncitizens - whether or not they are HIV positive - who have been in the United States
without Government permission also may be permanently barred from reentering or gaining legal status
in the United States. See the section on Travelers with HIV for more information.
Inform all noncitizens that they should never falsely claim to be a US citizen. False claims to US
citizenship can lead to a variety of problems, including deportation or removal, the inability to ever
legalize one’s status, or even prosecution. If you or your client believes that he or she has already made a
false claim to US citizenship, consult an immigration legal advocate. There is one extremely limited
exception for children of citizens who were lawful permanent residents and reasonably believed that they
also were citizens at the time they claimed to be a citizen. There may also be other considerations that
would help your client.
Every noncitizen should get counseling on HIV that assures confidentiality or anonymity or
both. Before undergoing a DHS medical examination, a noncitizen should get tested at a local clinic.
Most testing centers will ensure results are confidential, meaning they will share them only with the
person taking the test. Despite this assurance, however, some states require doctors and medical
practitioners to turn over the names of people who test positive for HIV or those with an AIDS diagnosis
to state or federal agencies. If this occurs in your state, noncitizens should only take tests anonymously.
Call the National AIDS Hotline (1-800-342-2437) or contact a local AIDS office or health department to
find out where your client can get an anonymous or confidential HIV antibody test.
Work to ensure noncitizens get necessary public benefits. Under the 1996 federal welfare reform
law, state and local governments decide who receives many public assistance benefits. Work with other
state advocates to ensure state and local public assistance is available to all your noncitizen clients,
regardless of immigration status. Since Congress eliminated numerous forms of federal public assistance
for noncitizens, this local support becomes vital, both for individual clients and for public health concerns
in general. Your efforts to convince state and local governments that noncitizens should receive public
assistance are crucial.
6
Be aware that some people administering public benefits hold racist, homophobic, and/or antiimmigrant ideas and stereotypes. Before sending noncitizens to another agency, including an
HIV/AIDS agency, find out that agency’s policies on reporting people to DHS. Ask them if they believe
they can help noncitizens and if they feel they must report undocumented immigrants to DHS. Although
many local benefits administrators are not required to report people they suspect are undocumented to
DHS, many may believe think they are. Moreover, unsympathetic service providers may call DHS if they
suspect a noncitizen is undocumented or HIV positive or has AIDS. Sympathetic benefits providers, in
contrast, may wish to help challenge the legality, morality, and practicality of reporting applicants to
DHS. It is unlikely noncitizens in the United States will be removed for being HIV positive, but they
could end up in immigration court if DHS learns of their HIV status. Make sure you do not refer clients to
service providers who will report them to DHS. The best you can do for your clients is to help them
understand their choices, and provide them with whatever support you can find.
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MAINE HIV REFERRAL GUIDE
Family Planning
Association of Maine
This brochure was prepared with funds to JSI Research & Training Institute, Inc. from the Centers for Disease Control and Prevention, Cooperative
Agreement # UT651CCU124364-01, and with support from the U.S. Department of Health and Human Services, Office of Population Affairs, Office
of Family Planning, Federal Project # 5FPTPA010002-26-00.
JSI Research & Training Institute, Inc.
235 Promenade Street, Providence RI 02908
Voice: 401.453.8201 | Fax: 401.453.7083 | Web: www.jsi.com
Available Online at www.famplan.org
Spring 2008
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MAINE HIV REFERRAL GUIDE