Download 2-3 4-5 6 7 8 7H[PLU[ (K]VJH[L 5L^Z 9

5LLK`4LKZ»
7H[PLU[(K]VJH[L5L^Z
Helping you and your clients access medications and health care.
.L[[OL4VZ[V\[VM5LLK`4LKZ
-964;/,,+0;69
Dear Advocates,
I’m a sucker for a discount. And I love
to get something for nothing. That’s why
I don’t fully agree with the old adage,
“There’s no such thing as a free lunch.”
There is at least one “free lunch:”
prescription drug savings from
NeedyMeds’ free drug discount card.
There are no hidden fees, no
membership costs and no minimum
requirements to get or use the card.
Folks just have to present it at their local
pharmacy, and they can save money on
their prescription medicines.
I bring up our free discount card
because it recently reached a significant
milestone. In December 2011, our card
saved folks more than $1 million in
prescription drug costs. Not only was
that a 5% increase from the previous
month, but it was a goal we had set in
the beginning of 2011 and met. Since
its inception in April 2009, our drug
discount card has saved needy people
$14 million in prescription drug costs.
That’s a lot of free lunch.
Not sure how to start using NeedyMeds? Wondering how to
find certain information? In this section we’ll feature a
particular NeedyMeds resource to help you find the
information you need.
The largest database on our website is the Free/Low-Cost Clinic
database. Here we list more than 10,000 clinics that are
located across the country. These clinics offer a variety of
health care services that range from general health care needs
to mental health, women’s health, dental services, pediatric
services and more—all provided at low or no cost!
Many of our callers need a prescription or refill but go without
because they cannot afford the cost to go to their physician to
get the prescription. Free/low-cost clinics may be an untapped
solution to this issue. The clinics are often set up to help
manage chronic health care conditions, therefore helping
patients avoid hospital emergency room visits and hospital
stays. Many clinics have pharmacies on site where they may be
able to provide medication immediately, again at low or no
cost.
To find clinics near you, go to the NeedyMeds home page,
look under additional resources on the left and click on “Free/
Low Cost Clinics” (http://www.needymeds.org/free_clinics.taf).
Enter your zipcode and check the distance box to get a listing
of clinics that meet that criteria, or click on a state on the map
to see all the clinics in that state. The entire listing is printable,
or you may check just the clinics you wish to print.
Hours and levels of service at these clinics vary greatly, so call
the clinics for current information and details.
These clinics are a valuable resource to many. From time to
time we profile clinics in our interview section. If you work for
a free/low-cost clinic and want to tell us more about your
clinic let us know! And let us know if you are aware of any
clinics that we haven’t listed! Email us at
[email protected].
Take care,
Vikki Sloviter
0U[OPZ0ZZ\L
2-3 4-5
Spotlight on
CeCe Cares
NeedyMeds
News &
Updates
PATIENT ADVOCATE NEWS
Drug Discount PAP Tracker
Card
Tips &
Updates
6
FEBRUARY 2012
7
Meet NM’s Bill PAP Updates
Kyrouz
&
NM Staff List
8
9
Page 1
:WV[
SPNO[VU
CeCe Cares Pediatric Epilepsy Foundation
Interview with Peter Cunningham, Co-Founder
Vikki: Thanks for talking with us about CeCe Cares.
The Foundation was officially launched almost a
year ago, in February 2011, so it’s still in its
honeymoon period. Tell us about the history and
mission.
Peter: CeCe Cares Pediatric Epilepsy Foundation
(CeCe Cares) is dedicated to providing joy and
support to children living with epilepsy. Our
mission is carried out by raising funds for The CeCe
Bear® Initiative, which donates teddy bears to the
leading pediatric epilepsy centers across America to
provide comfort to the children being treated and
financial support to the families challenged with
paying for it.
My wife Sarah and I founded the organization after
our daughter Cecelia, or “CeCe,” passed away at
the age of three of SUDEP (Sudden Unexplained
Death by Epilepsy), a complication related to her
diagnosis of Dravet Syndrome, a catastrophic form
of pediatric epilepsy.
Vikki: The Foundation’s goal for the first year was
to raise $150,000 for assistance and research and
to donate 2,000 CeCe Bears to children across the
country diagnosed with epilepsy. Were these goals
attained, and what goals does the organization
have for 2012?
Peter: When we originally launched the
Foundation, we sought to donate a significant
amount of the proceeds towards research. However,
as we began to talk with the families affected by
chronic forms of pediatric epilepsy, we found that
many needed financial assistance to help pay for
quality medical care. As such, we decided to shift
the use of proceeds to donate the 2,000 CeCe
Bears, which we did, and provide financial grants to
the families to help pay for medical care. In the first
year, we were able to provide six grants, and in
2012 we’re hoping to provide as many as 18 or 20
grants. So far we have raised more than $50,000.
PATIENT ADVOCATE NEWS
Approximately two-thirds of our proceeds go
towards funding the grants, and one-third to the
CeCe Bears.
Vikki: According to Epilepsy Advocate Magazine,
more than $9.6 billion is spent annually on
epilepsy-related expenses. To help alleviate some
of the burden, the Foundation has a Child
Assistance Grant Program. Tell us about this
assistance program.
Peter: Families can apply for a Child Assistance
Grant by going to the foundation website
(www.cececares.org) and downloading an
application. The grants are provided to families
whose child is suffering from a chronic form of
pediatric epilepsy and who have a demonstrated
financial need for assistance to help pay for medical
care, products or services not covered by insurance.
The grants are currently up to $2,500 per family per
year for up to three years.
Vikki: CeCe Cares and NeedyMeds recently
teamed up and now you offer our drug discount
card. Tell our readers about this exciting
partnership.
Peter: NeedyMeds reached out to us last year to talk
with us about our grant program so they could
include information in the disease-based assistance
section of the NeedyMeds. Upon talking about our
grant program we were able to share what sort of
requests we had been filtering, many of which were
for medical bills and prescriptions. The partnership
with NeedyMeds seemed only natural.
Now as inquiries come in about our grant program
we are able to provide everyone with a drug
discount card. By using the drug discount card not
only are we providing assistance to families, but
also NeedyMeds is helping us raise money.
FEBRUARY 2012
Continued on next page
Page 2
:WV[ SPNO[JVU[»K
Through our partnership with NeedyMeds, 25 cents
of each prescription is donated to our organization.
While 25 cents may not seem like much, it adds up
quickly. Working with NeedyMeds means we are
providing financial assistance to families, and they
are helping us raise money to continue to provide
support in the means of our grant program and
CeCe Bear ® Initiative.
Vikki: Most health insurance companies probably
consider pediatric epilepsy a pre-existing
condition, which, before the Affordable Care Act,
could be excluded from coverage. How does the
ACA affect pediatric epilepsy?
Peter: The truth is most providers, payers and
patients alike are still trying to figure out the
implementation of ACA. In theory, it should help
extend coverage for “pre-existing conditions” that
may not have been covered before but in reality the
implementation of the programs have not been
completed so the jury is still out.
Vikki: It can’t be denied that small organizations
and major companies alike now use social media
outlets as an extension of their marketing. Tell us
how CeCe Cares uses these types of media and
how effective it is.
Peter: CeCe Cares is marketing itself extensively
through the use of social media both in the sense of
aggregating “followers/fans” in the form of
Facebook and Twitter but also in the dissemination
of content to reporters and other influencers to help
spread the word.
Vikki: CeCe Cares is such a nascent organization
that I’m sure the hard work it took to get it started
is still pretty fresh in its founders’ memories.
Describe some of the challenges that you and
Sarah faced when trying to start a nonprofit
medical foundation.
PATIENT ADVOCATE NEWS
Peter: The biggest upfront challenge was in
designing a product “CeCe Bear” and packaging
that would be compliant to the hospitals receiving
the donation to distribute to patients. For example,
the bears’ eyes needed to sewn (versus an attached
button) since otherwise it could become a choking
hazard; similarly, messaging on the tag of the bear
and the website itself needed to comply with
general hospital guidelines. It took a lot of time to
design something that would meet everyone’s
needs. But we did it!
The NM
Watercooler
NM vice president Jaye van Dussen
and call center representative Peggy
Pepler recently became grandmothers.
Research associate Samuel RulonMiller became an uncle, and call
center supervisor Alanna Flannagan
became an aunt! The four are
celebrating the births of four healthy
baby girls, all born within a few
months of each other!
PAN Editor, Vikki Sloviter, will be
stepping down from her editorial role
and will be working in other areas of
NeedyMeds. She has thoroughly
enjoyed working on PAN for the past
six years!
FEBRUARY 2012
Page 3
5L^Z<WKH[LZ
+PK`V\RUV^^LVMMLY-9,,^LIPUHYZ&
During a NeedyMeds webinar, you will learn how to navigate the NeedyMeds website most efficiently to
help yourself and others and will be presented with an overview of the many different resources available
on our website. Some of this information can get overlooked, so we will go over each section of the
website to teach you when it makes most sense to use each one.
The next NeedyMeds webinars are:
Tuesday, February 7, 2012 @ 3 p.m. (ET)
Thursday, February 23, 2012 @ 11 a.m. (ET)
Click on the date you’d like to attend to register online or visit www.needymeds.org. Can’t attend
either of these dates? We can tailor a webinar for your organization at your convenience. Email
[email protected] for more information.
>OH[>L»]L)LLU>VYRPUN6U
NeedyMeds has joined the North Shore Chamber of Conference and looks forward to interacting
with local business owners to expand awareness of our resources. Even though NeedyMeds is
located in a state (MA) with mandatory health insurance coverage, millions of people here still do
not have basic health insurance and can benefit from our many resources.
We’re going to Chicago in June to attend the American Society of Clinical Oncologists (ASCO)
conference, which attracts more than 30,000 attendees and offers patient advocates programs in
which NeedyMeds hopes to participate. We will also have our booth in the patient advocates area
of the conference.
In the area of outreach, we’ve visited the mayors’ offices of the MA communities of Salem, Lynn,
Lowell and Beverly and we’ve stopped in at numerous social services agencies, including local
Councils on Aging and Greater Lynn Senior Services. Let us know if you know an organization that
might like to meet or talk with us to see how we can help them.
3
Just
facts
PATIENT ADVOCATE NEWS
1. NeedyMeds
offers more
than 807 drug
coupons for 754
medications.
2. There are more
than 4,107 drugs
and dosages on
our Brand Name
Drug list.
FEBRUARY 2012
3. We have more
than 288 PAP
applications
available for
download on our
site.
Page 4
5L^Z<WKH[LZ
:WLJPHS;VWPJ>LIPUHYZ
In addition to the bi-monthly NeedyMeds webinars that present an overview of our website,
we now offer an array of webinars that offer various educational opportunities for health care
professionals, advocates and patients.
Special-topic webinars are moderated by a NeedyMeds staff member and feature a special
guest presenter for each topic. Each webinar includes a presentation, followed by a Q & A,
where participants will have the opportunity to ask questions.
February Special-Topic Webinar
Our next special topic webinar, “NeedyMeds Webinar Presented in Spanish,” is scheduled for February
9th at 11AM Eastern Time.
Webinar de Febrero Tema Especial
Nuestro!próximo tema especial del seminario web, "Needymeds Seminario Web presentado en
español",!está programado para el 9 de febrero!a las 11:00AM Tiempo del Este.
Haga clic en el siguiente enlace para registrarse (click on the link below to register:):
https://www1.gotomeeting.com/register/487991753
Webinar Description
Do you speak Spanish or help others who speak Spanish?
In addition to our website and brochures being available in Spanish, we are now offering our
first-ever Spanish webinar! This webinar will provide similar information to the bi-monthly
NeedyMeds webinars, but in Spanish!
Damaris Mercedes, NeedyMeds’ Bilingual Helpline Representative, will give a Spanish
presentation about the resources available on the NeedyMeds website and how best to utilize
them to help yourself or others.
Descripción del!Seminario Web
¿Habla!español o ayuda!a otros que hablan!español?
¡Además de nuestro sitio!web y folletos disponibles en español, ahora estamos ofreciendo
nuestro primer!seminario web!en!español! Este!seminario web!proporcionará información
similar a los!seminarios web!bimensual!en!inglés!de NeedyMeds.
Damaris Mercedes,!Representante de la línea de Asistencia Bilingüe!de!NeedyMeds, ofrecerá
una presentación español!acerca de los recursos disponibles en el sitio web de NeedyMeds y la
mejor manera de utilizarlas para ayudar a usted!y!a otros.
Interested in facilitating a webinar? Please contact us at [email protected] to suggest a topic.
PATIENT ADVOCATE NEWS
FEBRUARY 2012
Page 5
+Y\N+PZJV\U[*HYK
7YPU[*SPWHUK:H]L!
With the free NeedyMeds Drug Discount Card you can save up to 80% off the price of your prescription
medications. The card may be used by those without insurance and by those who decide not to use their
insurance—for example if the drug is not covered under their plan, the copay or deductible is high, the cap
has been reached, or if they are in the donut hole.
Our NeedyMeds Drug Discount Card is accepted at more than 61,000 pharmacies, including major chains
such as Walmart, CVS, Walgreens, Rite Aid and at regional chains and local stores. There are no income,
insurance or residency requirements, and no fees or registration process needed to use the card. One card can
be shared with friends and family members, or they can print their own. The card can also be used for overthe-counter medications and medical supplies if written on a prescription blank, and pet prescription
medicines bought at a pharmacy. The card is active immediately and never expires. Every time the card is
used, NeedyMeds receives a small amount to keep our website up to date and growing.
+Y\N*HYK<WKH[L!*VTT\UP[`7HY[ULYZ
In addition to the long-standing drug discount card partnership with the town of Gloucester, and the recently
announced partnership with the city of Lowell, MA, NeedyMeds has entered into partnerships with two more
communities!
NeedyMeds is now working with the towns of Chelmsford, MA and Dracut, MA on a discount card program as
well. That’s four communities total!
With these partnerships, NeedyMeds is able to work closely with these communities to help their residents
afford the costs of medications and health care.
PATIENT ADVOCATE NEWS
FEBRUARY 2012
Page 6
7(7;YHJRLY
PAPTracker is HIPAA-compliant, web-based software that streamlines and simplifies the management of
patient assistance programs. PAPTracker is ideal for clinics, community health centers, hospitals and other
groups that serve clients/patients that need access to prescription medications but cannot afford them.
PAPTracker eliminates handwritten applications and repetitive entry of client and doctor information. It
populates manufacturers' applications using stored patient and prescriber information and automatically
creates refill reminders. PAPTracker always uses the most current information contained in our NeedyMeds
PAP database. PAPTracker also provides over 75 patient, activity and demographic reports.
NeedyMeds has limited grant funds available to help qualified small clinics ready to move from paper
applications to this software solution. More information is on the NeedyMeds website and here: http://
www.needymeds.org/indices/paptracker.htm
;YHJRLY;PWZ<WKH[LZ
!"#$%&'$()&*$+,-+$./.01-2(31$43+5$%&'$+1-2($2&6743+3#$./.$-774"2-+"&)$5+3758$9313:5$,&*;
!" Go to the Admin#!#Configuration options drop-down menu. Choose the steps you wish to track by
clicking the check box to the right of the step. You can also tell PAPTracker how long it should take to
complete each step.
$" In the Orders drop-down menu select Lookup by Patient (or click Lookup in left side bar).
%" Enter patient’s last name and click the magnifying glass icon.
&" Click the order # for the drug you are tracking.
'" Enter the date of the most recently completed tracking step in “Date Actually Completed” column.
(" Do not enter or change entries in “Date Expected” column (left side); these will automatically
adjust themselves
6. <Save Changes>
7. If you wish, go to “Lookup by Patient to confirm”
8. The refill reminder date will also be updated based on the most recent tracking steps. That’s it!
PATIENT ADVOCATE NEWS
FEBRUARY 2012
Page 7
4LL[6\Y
Bill Kyrouz
Vikki: Hello, Bill! Thanks for agreeing to be interviewed for our newsletter. Tell us about your background,
what brought you to NeedyMeds, and how long you’ve been with us.
Bill: I retired from the IRS in 2005 after 34 years service, spending the last 17 years as an Appeals Officer.
Fortunately, I was able to lower the tax burden of many taxpayers, and in some instances, I eliminated the
entire additional tax that some taxpayers were informed they owed. After doing some volunteer work for the
City of Gloucester schools, a city agency informed me that NeedyMeds, a non-profit, was looking for volunteer
help. I started at NeedyMeds in April 2009 and became a permanent part-time employee in August 2009.
Vikki: What are your daily and regular tasks at NeedyMeds? Where are people most likely to find you?
Bill: My primary duties involve keeping the databases that supports our website up to date; thus, I am almost
always at my computer. Primarily, I work with the databases that support state-sponsored programs and
application assistance, and I also help out with free/low-cost clinics database. And, I answer NeedyMeds helpline calls when needed.
Vikki: In doing our database updates, what have you learned about the world of patient assistance programs?
What has surprised you the most? What would you most like to see improved?
Bill: The number of assistance programs available to the public was a surprise to me, and, apparently, a surprise
to the many people who visit the NeedyMeds website. Our website includes many state and private foundation
programs that help with various health needs, such as adults who have cystic fibrosis, people who have HIV/
Aids and those in need of diabetic supplies to name a few.
Researching state websites for state-sponsored programs can be a challenge since states have different names
for departments, divisions, branches, etc. In addition, if you find the right department, it is sometimes difficult
to find the right unit or office. Since health programs are so important, I would like to see each state review
their state website and simplify or clarify the process for finding health-related programs.
Vikki: You have a background in accounting and worked for the IRS. How do you think your personal and
professional skills and experiences have informed your work at NeedyMeds?
Bill: During my first year at the IRS, I spent some time in Boston Taxpayer Walk-In Assistance; I learned to be
patient. Patience is a necessary virtue when dealing with help line calls in any organization. I believe that
accounting/auditing education or experience is helpful to anyone who operates a business or works in an
office; accounting is the language of business. While accounting and auditing involve detailed work, they help
you look at the big picture of your organization.
Vikki: Finally, if our readers were to visit Gloucester, where NeedyMeds is based, what one place would you
hope they not miss?
Bill: Stacy Boulevard overlooks Gloucester’s outer harbor and is home to statues honoring “they that go down
to the sea in ships” and those that wait for them at home (fisherman wives and families); it is also the home of
the memorial honoring those who served in World War II. The Boulevard, while often busy with walkers, is a
peaceful and beautiful place to walk; it is good for the body and the mind.
PATIENT ADVOCATE NEWS
FEBRUARY 2012
Page 8
4,,;6<9:;(--
7(7<7+(;,:
Revisions to the Sanofi Programs Update:
There is now one program called "Sanofi Patient
Connection Program" and one application for
all of the medications Sanofi covers.
The Eligard, Multaq and Rilutek PAPs are
no longer their own programs, but are
now all covered by Sanofi Patient
Connection Program.
The PACT+ Program for Uninsured
Patients and PACT+ Program for Patients
Denied Coverage are now part of the
Sanofi Patient Connection Program.
Elitek IV 1.5ml/mL (rasburicase)
Eloxatin Injection 50mg, 100mg
(oxaliplatin) and Jevtana Injection
60mg (cabazitaxel) will continue be
covered.
Anzemet CINV Tablets (dolasetron)
Nilandron Tablets 150mg
(nilutamide) Taxotere Injection 20mg,
80mg (docetaxel) will no longer be
covered under any program.
Sanofi Pasteur Patient Assistance Program is
now part of the Sanofi Patient Connection
Program.
The Sculptra PAP is now offered by Valeant
Pharmaceuticals.
Bristol-Myers Squibb Patient Assistance
Foundation (ORENCIA®) now has a new selfinjection formulation and an updated
application.
The following programs have updated or new
applications:
90*/(9+ SAGALL, MD
President
[email protected]
(3(55( FLANAGAN
Call Center Supervisor
[email protected]
7,..@ PEPLER
Call Center Representative
[email protected]
)033 KYROUZ
Research Associate
[email protected]
96),9;( DOWNEY
Software Sales Manager
[email protected]
+(4(90: MERCEDES
Bilingual Helpline Representative
[email protected]
96)05 HOFFMAN
Database & Research Manager
[email protected]
+0(55, OFFICER
Admin. Asst & Database Researcher
[email protected]
9<;/ ROWE
Call Center Representative
[email protected]
,30A(),;/ MESSENGER
Outreach & Education Manager
[email protected]
:(4<,3 RULON-MILLER
Research Associate
[email protected]
1(@, VAN DUSSEN
Vice President
[email protected]
;65@( WHITE
Research Associate
[email protected]
1<30, KAUTZ MILLS
Director of Outreach
[email protected]
=0220 SLOVITER
Proofreader
[email protected]
2(9,5 GRENHAM
Call Center Assistant
[email protected]
www.needy
meds.org
EMAIL US
[email protected]
FAX US
206-260-8850
CALL US
978-281-6666
WRITE US
PO Box 219
Gloucester, MA 01931
Xubex PAP
Together RX Access
Ampyra Patient Assistance Program and
Ampyra Co-Pay Assistance Program
Azilect PAP
GSK Access
PATIENT ADVOCATE NEWS
NeedyMeds, Inc. is a 501(c)(3) nonprofit with the mission of
helping people who cannot afford medicine or health care
costs. The information at NeedyMeds is available
anonymously and free of charge. NeedyMeds does not
discriminate on the basis of race, ethnicity, religious
affiliation, gender or sexual orientation.
FEBRUARY 2012
Page 9