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NeedyMeds’

Patient Advocate News Helping you and your clients access medications and health care.

Get the Most out of NeedyMeds

FROM THE EDITOR 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 freeclinics@needymeds.org.

Take care, Vikki Sloviter

In this Issue

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Spotlight on CeCe Cares

NeedyMeds News & Updates

PATIENT ADVOCATE NEWS

Drug Discount PAP Tracker Card Tips & Updates

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FEBRUARY 2012

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Meet NM’s Bill PAP Updates Kyrouz & NM Staff List

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Spot light on... 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.

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Spot light cont’d 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!

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News & Updates Did you know we offer FREE webinars? 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 Elizabeth@needymeds.org for more information.

What We’ve Been Working On 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.

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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


News & Updates Special-Topic Webinars 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 outreach@needymeds.org to suggest a topic.

PATIENT ADVOCATE NEWS

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Drug Discount Card Print, Clip and Save:

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.

Drug Card Update: Community Partners 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

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PAPTracker 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

Tracker Tips & Updates Did  you  know  that  PAPTracker  lets  you  track  completed  PAP  application  steps?  Here’s  how: 1. Go to the Admin  à  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. 2. In the Orders drop-down menu select Lookup by Patient (or click Lookup in left side bar). 3. Enter patient’s last name and click the magnifying glass icon. 4. Click the order # for the drug you are tracking. 5. Enter the date of the most recently completed tracking step in “Date Actually Completed” column. a. 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

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Meet Our... 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

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MEET OUR STAFF

PAP UPDATES 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速) now has a new selfinjection formulation and an updated application. The following programs have updated or new applications:

RICHARD SAGALL, MD President richsagall@needymeds.org ALANNA FLANAGAN Call Center Supervisor alanna@pap-apps.org

PEGGY PEPLER Call Center Representative peggy@pap-apps.org

BILL KYROUZ Research Associate bkyrouz@needymeds.org

ROBERTA DOWNEY Software Sales Manager roberta@needymeds.org

DAMARIS MERCEDES Bilingual Helpline Representative damaris@needymeds.org

ROBIN HOFFMAN Database & Research Manager robin@needymeds.org

DIANNE OFFICER Admin. Asst & Database Researcher dianne@needymeds.org

RUTH ROWE Call Center Representative ruth@pap-apps.org

ELIZABETH MESSENGER Outreach & Education Manager elizabeth@needymeds.org

SAMUEL RULON-MILLER Research Associate samuel@needymeds.org

JAYE VAN DUSSEN Vice President jaye@needymeds.org

TONYA WHITE Research Associate tonya@needymeds.org

JULIE KAUTZ MILLS Director of Outreach julie@needymeds.org

VIKKI SLOVITER Proofreader vikki@needymeds.org

KAREN GRENHAM Call Center Assistant karen@needymeds.org

www.needy meds.org EMAIL US info@needymeds.org

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

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February 2012 Patient Advocate News