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BINDERCOVrev1:Layout 1 4/18/08 3:47 PM Page 1 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: Talk about the next few hours, week, two weeks For instance, they may want to call in sick to work. Help them think about who they do and do not want to tell (for instance, they may not want to tell their boss). 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 Your rapid HIV test result is negative. Your rapid HIV test result came back non-reactive. This means that HIV antibodies were not found in your blood. This means that the test did not detect HIV antibodies in your blood. 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. This result is based on possible exposure you had at least 3 months ago. How are you feeling about this result? 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. Message We need to repeat the process from the beginning in order to provide you with an accurate result. I would like to offer you another test. There was a problem when running your test and it cannot be interpreted. The test is invalid and cannot be interpreted because there was a problem. Most of the time the problems are related to the process of collecting the specimen or to the test kits that we use. Sometimes problems occur with the test kits or blood collection process. 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. Our system has detected that there was a problem while running your test. We have measure in place to determine when problems arise while running the test. How are you feeling? 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 Your screening test result is positive. I have your screening test result and it is reactive. This means that the test detected HIV antibodies in your blood. This is a strong indication that you may have been infected with HIV. 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. Assess the client’s emotional reaction to the result. Advise client to take precautions to avoid transmitting infection to others while awaiting confirmatory testing 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 Your test result came back indeterminate. 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. Emphasize the need for confirmatory testing. Assess the client’s emotional reaction to the result. Advise client to take precautions to avoid transmitting infection to others while awaiting confirmatory testing 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 Your test result came back positive. I have your HIV test result and it is positive. This means that the test detected HIV antibodies in your blood. This means that the test shows that you have been infected with HIV. (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. Assess the client’s emotional reaction to the result. Advise client to take precautions to avoid transmitting infection to others Emphasize the importance of getting linked to specialty medical care. 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: 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. Family Planning Centers in Maine, 1-877-326-2345, www.mainefamilyplanning.org. Confirmatory Testing for the Rapid HIV Test 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. Confirmatory testing may be performed on either a whole blood or oral fluid specimen. All rapid HIV test results must be followed up with a Western blot and/or immunoflourescent assay (IFA) for confirmation. Indicate on the lab sheet that the specimen is from an individual who already received a reactive rapid test result. Most confirmatory test results will be positive, unless in a low prevalence setting. 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. 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. 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. 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: Reporting and recording results, Referring specimens (or test subjects, if specimens are not collected on-site) for confirmatory testing, Managing confirmatory test results, and 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: All OraQuick reactive (preliminary positive) results must be followed up with either a Western blot or immunofluorescent assay (IFA) for confirmation. 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). 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: For blood specimens, a confirmatory test should be repeated with a new specimen to rule out specimen mix-up. 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: 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. 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: 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, Report the test result to the person being tested, and 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: Comparing the OraQuick reactive results with the confirmatory test results. Arranging for someone outside the organization to observe testing. 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 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: 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 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 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: Hours Cost (If Known - Free? Sliding Scale?) Appointment Needed? (Y/N) Language(s) Spoken Rapid Testing Available? (Y/N) Special Population(s) Served Confidential/Anonymous available? (Which?) • 1. Lewiston STD Clinic (CTR Site) 795-4019 179 Lisbon St Lewiston, ME 04243 • • • • • • • • • 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 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 15. FPAM Augusta Family Planning 626-3426 43 Gabriel Drive Augusta, ME 04332-0587 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 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 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 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 Planning 23. KVCAP Skowhegan Family Planning 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 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 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 725-8264 P.O. Box 234 (mailing address) 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 By appointment and walk-in welcomed Access to language line for translation services Confidential tests offered 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. Maine Testing Sites 2008 37. Western Maine Community Action Health Services Porter Sacopee Valley Health Outreach Clinic 625-8126 70 Maine Street Porter, ME 04068 • • • 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: 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 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) 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 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: Togus VA Medical Center, 1 VA Center, Augusta, ME 04330. Toll-free: (877) 4218263 or (207) 623-8411. For Children, Teens and Young Adults: Maine Pediatric Specialty Group, 887 Congress St., Suite 320, Portland, ME. (207) 662-5522. For HIV OB/GYN specialty care: 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? 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. 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. 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. 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: 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: 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 Free hepatitis C testing Aroostook HEALTH 1st—Presque Isle 169 Academy St. Presque Isle, Maine 04769 Ph: 207-768-3062 Free hepatitis C testing HEALTH 1st—Fort Kent 486 Frenchville Rd. Fort Kent, Maine 04743 Ph: 207-834-3513 Free hepatitis C testing HEALTH 1st--Houlton 91 Military St., Suite B Houlton, ME 04730 Ph: 207-532-5303 Free hepatitis C testing City of Portland, Public Health Division HIV/STD Clinic 103 India St. Portland, ME 04101 Ph: 207-874-8446 Free hepatitis C testing Free hepatitis A and B vaccine Discovery House 400 Western Ave. South Portland, ME 04106 Ph: 207-774-7111 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 Free hepatitis C testing . Knox Rockland Family Planning P.O. Box 866 22 White St., Suite 101 Rockland, ME 04841 Ph: 207-594-3114 Free hepatitis C testing Physical Location: Cleveland House 4 Bowdoin Mill Island, Suite 101 Topsham, ME 04086 Ph: 207-725-8264 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 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 Free hepatitis C testing *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 *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 Free hepatitis C testing Washington Discovery House 12 Beech St. Calais, ME 04619 Ph: 207-454-1300 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 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 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: ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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%). ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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. ○ 2 ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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 ○ 3 ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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. ○ 4 ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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? ○ 5 ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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. ○ 6 ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ 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: 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. 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. 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. 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 58 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. The surest way to avoid spreading sexually transmitted diseases (STDs), including HIV, is not to have sexual intercourse. 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.) 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 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: 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 ( ) TOLL -FREE N ATION AL HIV/AIDS TREA TMENT INFORMA TION HO TLINE 1-800-822-7422 LO CAL/INTERN ATION AL 415-558-9051 MOND AY-FRID AY 9-4 TUESD AY 9-7 PACIFIC TIME OLL-FREE NA TIONAL TREATMENT INFORMATION HOTLINE CAL/INTERNA TIONAL MONDA -FRIDA TUESDA . . 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. › › › TOLL TOLL -FREE -FREE N AN TION ATION ALAL HIV/AIDS HIV/AIDS TREA TREA TMENT TMENT INFORMA INFORMA TION TION HO HO TLINE TLINE1-800-822-7422 1-800-822-7422LO LO CAL/INTERN CAL/INTERN ATION ATION ALAL 415-558-9051 415-558-9051 MOND MOND AA YY -FRID -FRID AA YY9-5 9-4 SA TUESD TURD AAYY9-7 10-4PAPCIFIC ACIFIC TIME TIME OLL-FREE OLL-FREE NA NA TIONAL TIONAL TREATMENT TREATMENT INFORMATION INFORMATION HOTLINE HOTLINE CAL/INTERNA CAL/INTERNA TIONAL TIONAL MONDA MONDA -FRIDA -FRIDA SATURD TUESDA TURDA 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. TOLL -FREE N ATION AL HIV/AIDS TREA TMENT INFORMA TION HO TLINE 1-800-822-7422 LO CAL/INTERN ATION AL 415-558-9051 MOND AY-FRID AY 9-4 TUESD AY 9-7 PACIFIC TIME OLL-FREE NA TIONAL TREATMENT INFORMATION HOTLINE CAL/INTERNA TIONAL MONDA -FRIDA TUESDA 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! TOLL -FREE N ATION AL HIV/AIDS TREA TMENT INFORMA TION HO TLINE 1-800-822-7422 LO CAL/INTERN ATION AL 415-558-9051 MOND AY-FRID AY 9-4 TUESD AY 9-7 PACIFIC TIME OLL-FREE NA TIONAL TREATMENT INFORMATION HOTLINE CAL/INTERNA TIONAL MONDA -FRIDA TUESDA 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: 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. Get specialty care for HIV in addition to your regular OB/GYN care. You will need to take certain medicines to get the amount of HIV as low as possible in your body before delivery. 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. You should not breastfeed, as HIV can be passed through breast milk. For specialty HIV OB/GYN care contact: 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: Find a doctor who specializes in HIV treatment. Follow your doctor’s instructions. Talk to your doctor about your questions and concerns. 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. Get immunizations (shots) to prevent pneumonia and flu. If you smoke or use drugs not prescribed by your doctor, quit. Eat healthy foods. Eating well is very important to keep you strong, and keep your energy up and your weight stable. Practice safer sex. Exercise regularly. Exercise helps you stay strong, and helps relieve stress. Get enough sleep and rest. 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 1 of 4 Print this page http://www.thebody.com/content/art882.html?ts=pf • Back to Web version of article 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 4/24/2008 12:21 PM I'm Dancing as Fast as I Can - The Body 3 of 4 http://www.thebody.com/content/art882.html?ts=pf 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 4/24/2008 12:21 PM I'm Dancing as Fast as I Can - The Body 4 of 4 http://www.thebody.com/content/art882.html?ts=pf 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 1 of 4 Print this page http://www.thebody.com/content/art30259.html?ts=pf • 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 4/24/2008 12:20 PM Creed -- You Are Not Alone - The Body 2 of 4 http://www.thebody.com/content/art30259.html?ts=pf 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 4/24/2008 12:20 PM Creed -- You Are Not Alone - The Body 3 of 4 http://www.thebody.com/content/art30259.html?ts=pf 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 4/24/2008 12:20 PM Creed -- You Are Not Alone - The Body 4 of 4 http://www.thebody.com/content/art30259.html?ts=pf 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 82 83 86 87 88 89 82 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. 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. Frannie Peabody Center, 335 Valley St., Portland, ME 04102. (207) 774-6877 (Cumberland and York Counties). Eastern Maine AIDS Network, P.O. Box 2038, 370 Harlow St., Bangor, ME 04402. (207) 990-3626 (Penobscot, Piscataquis, and Aroostook Counties). 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). Down East AIDS Network, 25 Pine St., Suite A., Ellsworth, ME 04605. (207) 6673506 (Washington and Hancock Counties). English and Spanish spoken. 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. 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: HealthReach Harm Reduction, 9 Green St., Augusta, ME 04330. (207) 621-3770 (Michael Kristan or Kim Hoak). Healthways/Regional Medical Center of Lubec, Lubec Health Clinic, 43 South Lubec Rd., Lubec, ME 04652. (207) 733-1090 ext. 2226. The Virology Treatment Center, 48 Gilman St., Portland, ME 04101. (207) 6622099. 83 More Information on ASO Services: 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. 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. 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. 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. 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: 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. 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. 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. 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. 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: Maine Statewide Crisis Hotline, 1-888-568-1112. Sweetser, 1-800-434-3000 (offices located statewide). Interpreters available. Acadia Hospital, 268 Stillwater Ave. Bangor, ME. 1-800-640-1211. Tri-County Mental Health Services, 415 Rodman Rd., Auburn, ME 04210 (offices located statewide). (207) 784-4110. Community Health and Counseling Services, 42 Cedar St., Bangor, ME 04401 (offices located statewide). (207) 947-0366. Hotlines (Telephone Help): For information on HIV/AIDS: 1-800-232-4636 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. The National Domestic Violence Hotline, 1-800-799-7233 or the statewide hotline at 1-866-834-HELP. Spanish available. Abused Women’s Advocacy Project, 24-hour hotline 1-800-559-2927 or (207) 7954020. www.awap.org Battered Women’s Project, 1-800-439-2323 (24-hour hotline) or (207) 532-4004 (8am -4pm). www.batteredwomensproject.org Caring Unlimited, 1-800-239-7298 (24-hour hotline) or (207) 324-1802. www.caring-unlimited.org Family Crisis Services, 1-800-537-6066 or (207) 874-1973. www.familycrisis.org Family Violence Project, 1-877-890-7788 (24-hour hotline) or (207) 623-3569. Interpreters available. www.familyviolenceproject.org New Hope For Women, 1-800-522-3304 (24-hour hotline). www.newhopeforwomen.org Spruce Run, 1-800-863-9909 (24-hour hotline) or (207) 947-0496. Interpreters available. www.sprucerun.net The Next Step, Hancock County, 1-800-315-5579 (24-hour hotline) or Washington County, 1-888-604-8692. Interpreters available. Womancare, 1-888-564-8165. www.wmncare.org 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: 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. Alcoholics Anonymous Hotline: (800) 737-6237. www.aamaine.org 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: HealthReach Harm Reduction, Next Step Needle Exchange, 9 Green St., Augusta, ME 04330. (207) 621-3793. Down East AIDS Network, 25 Pine St., Suite A., Ellsworth, ME 04605. (207) 6673506. Eastern Maine AIDS Network, P.O. Box 2038, 370 Harlow St., Bangor, ME 04402. (207) 990-3626. 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: 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. Resource for people living with HIV/AIDS in Maine: www.positiveme.org. Federal HIV/AIDS information and resources: www.aids.gov. The Maine Department of Health and Human Services: www.maine.gov/dhhs/boh/ddc/hiv_std_vh.htm. 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. Project Inform: www.projectinform.org, 1-800-822-7422. National Minority AIDS Council: www.nmac.org, (202) 483-6622. English and Spanish spoken. The Trevor Project (in dealing with GLBTI issues): www.thetrevorproject.org, 1866-488-7386. Deserve to Know website for MSM: www.deservetoknowme.org. Social Network and Info for HIV positive people: www.patientslikeme.com. More National and Web-based Support Resources: 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. AIDS Vaccine Advocacy Coalition, www.AVAC.org. The Black AIDS Institute, www.blackaids.org. 89 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. 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. HIV General Info, www.managinghiv.com. 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. HIV Vaccine Campaign, www.Bethegeneration.org. Informational site for a wide range of HIV/AIDS questions, www.aidsinfonet.org. National Association of People With AIDS (NAPWA), Silver Spring, MD. (240) 247-0880. www.napwa.org. National HIV/AIDS Treatment Infoline, 1-800-822-7422. National Native American AIDS Prevention Center (NNAAPC), (510) 444-2051. www.nnaapc.org. Social Security Administration, Benefits for People living with HIV/AIDS: www.ssa.gov/pubs/10019.html. English and Spanish spoken. 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. 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: The Maine Center for Disease Control and Prevention has a strict privacy policy. 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: Tell the person yourself. Your social worker or doctor can give you some ideas for how to do this. 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. 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. 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: GLAD Legal Information Infoline, 1-800-455-GLAD (4523). English and Spanish spoken. 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: 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 1 of 2 Print this page http://www.thebody.com/content/living/art12754.html?ts=pf • Back to Web version of article 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: 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 Carry copies of any immigration documents you have at all times. Carry with you the name and phone number of an immigration advocate who will take your call from DHS detention. Before traveling outside the United States, check with an immigration advocate about whether you will be able to get back in. If DHS detains you, demand your right to call your immigration advocate. Never sign any DHS documents without first talking to an immigration advocate. 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. 7 BINDERCOVrev1:Layout 1 4/18/08 3:47 PM Page 1 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