November 2011 PAN

NeedyMeds’

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

FROM THE EDITOR When Rich Sagall, MD cofounded NeedyMeds with Libby Overly, MEd, MSW almost 15 years ago, the Internet as we know it today was in its nascent stages, but they recognized its potential for sharing information.

NeedyMeds started as a website, but now we also exist on media sites such as Facebook and Twitter. We have more than 1,700 Facebook members who recognize and appreciate the work we do, and we have more than 10,000 opt-in subscribers for this monthly newsletter. Our drug discount card (available as a card and an iPhone app) helped people save $875,288.44 in September 2011, a 16% increase from the previous month.

In this season of giving thanks, we are thankful for the opportunity to be able to provide much-needed information and assistance to the underserved. Thank you for everything you do, too.

Vikki Sloviter Editor

Get the Most out of NeedyMeds Not sure where to start using NeedyMeds? Wondering how to find certain information? In this new section we’ll feature a particular NeedyMeds resource to help you find the information you need.

The Disease Resource Pages are designed as a "one-stop shopping" concept developed to save time for those with specific diseases or conditions. The pages provide information and links to medical information and support organizations for the specific disease, as well as listing patient assistance programs for specific medications used to treat the disease and programs that provide financial support for a wide range of needs related to the disease (meals, medical equipment, adaptation needs, transportation, etc.)

To find a Disease Resource Page on www.needymeds.org, look under the Additional Resources section of the website and click on Disease Resource Pages. This will open a page with an alphabetical list of all the conditions we currently have pages for on the website. Click on the name of the disease to bring you to its Disease Resource Page.

Whether you’re looking for assistance for yourself or helping someone in need, these pages allow you to find all of the resources available for a specific condition in one centralized location on the website.

We currently have listed many major diseases and conditions.

However, please email us at info@needymeds.org if you’d like us to add a page for a disease that we do not currently list.

In this Issue Spotlight on Lymphoma Research Foundation

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PATIENT ADVOCATE NEWS

NeedyMeds News & Updates

Drug Discount Card

Facts

PAP Tracker

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NOVEMBER 2011

Meet NeedyMeds‘ Tonya White

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PAP Updates Staff Listing

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Spot light on...

Lymphoma Research Foundation Interview with Brian Tomlinson, Chief Program Officer Vikki: Hi. Thanks so much for agreeing to be interviewed for PAN. Tell us about the history and mission of the Lymphoma Research Foundation, and what your role is.

Brian: The Lymphoma Research Foundation (LRF) is the nation's largest non-profit organization devoted exclusively to funding innovative lymphoma research and providing people with lymphoma and health care professionals with up-to-date information about this type of cancer. LRF's mission is to eradicate lymphoma and serve those touched by this disease.

LRF was formed in November 2001 by the merger of the Cure for Lymphoma Foundation (CLF) and the Lymphoma Research Foundation of America (LRFA). Both organizations were founded by lymphoma advocates who sought to use their personal experiences with lymphoma to benefit others with the disease.

Our goal is to change the future for everyone whose life has been affected by a lymphoma diagnosis.

We are dedicated to funding biomedical research focused on the origins, treatment and identification of a cure for lymphoma; to raising public awareness of the disease; and providing support and services to people with lymphoma, their families and caregivers.

In my role as Chief Program Officer, I oversee the development, implementation and evaluation of the Foundation’s patient education, patient services and professional education programs, as well as the development and dissemination of disease-specific publications. We recently collaborated with you to create a Lymphoma Resource Page and formed a Drug Discount Card Partnership with LRF. Tell us about how we became partners, and what that means for your organization.

PATIENT ADVOCATE NEWS

LRF joined with NeedyMeds to assist members of the lymphoma community that need financial help and support. We are thrilled to work with them to share these great resources with the people we serve.

The LRF has a Patient Aid Grant Program that helps lymphoma patients with certain costs. Can you explain the grant, what the eligibility criteria are and how many people so far have received grants?

LRF's Patient Aid Grant program provides limited financial assistance to lymphoma patients who are uninsured or have adequate medical insurance but struggle to pay for expenses related to their lymphoma treatment, such as medical bills, transportation costs to get to and from treatment, lodging expenses during treatment and childcare costs while they are at treatment. We have provided nearly 2,000 grants totaling close to $700,000 since the inception of the program.

As its name implies, the LRF primarily focuses on funding research for cures for all forms of lymphoma. What are some studies or findings that have resulted from LRF research that are significant in the world of cancer research?

The Foundation remains dedicated to identifying a cure for lymphoma through an aggressively-funded research program. Our research portfolio extends to all lymphoma subtypes and consists of the following grant awards: Clinical Investigator Career Development Awards; Disease-Specific Research Initiatives focused on Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma, Follicular Lymphoma and Mantle Cell Lymphoma; and, postdoctoral Fellowships. To date, we have awarded over $47.5 million in research.

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Spot light cont’d Your website is very extensive, and you offer educational programs and support services, including webcasts and teleconferences. What role does technology play in LRF’s ability to educate and help people?

LRF offers a variety of online and web-based resources for people affected by lymphoma. We have over 70 webcasts (synchronized slides and audio) on our website where people can learn more about their diagnosis. We also have four disease-specific websites focused on peripheral T-cell lymphoma, mantle cell lymphoma, follicular lymphoma and chronic lymphocytic leukemia. The use of technology helps us expand our reach around the world. Each year, more than 40,000 people participate in our programs.

LRF recently launched four new websites focused on some of the subtypes of lymphoma. These sites include follicular lymphoma (www.focusonFL.org), mantle cell lymphoma (www.focusonMCL.org), peripheral T-cell lymphoma (www.focusonPTCL.org) and chronic lymphocytic leukemia (www.focusonCLL.org).

In your experience with the LRF, what are some of the primary challenges and issues that lymphoma patients and their families face in terms of being able to get the medical care they need?

Lymphomas are a complicated group of nearly 70 different types of cancer. It is so important for people to be properly diagnosed and have access to the information the LRF provides. Many forms of the disease are incurable and may require treatment at different points in time.

Finally, how can our readers learn more about your organization and how it can help them, their clients or their loved ones?

People can call our Helpline at 800-500-9976, email us at helpline@lymphoma.org or visit our website (www.lymphoma.org).

PATIENT ADVOCATE NEWS

NOVEMBER 2011

GLOUCESTER, MA— On October 4, 2011, Rich Sagall, MD, NeedyMeds’ president, joined representatives from a number of health-oriented groups to testify before the joint Public Health Committee in Boston. Massachusetts is the only state that prohibits the use of drug discount coupons and copay cards. The proposed legislation would remove the ban, allowing Massachusetts residents to benefit from programs that residents of every other state do.

Dr. Sagall testified in favor of the legislation to remove the ban. He mentioned the hardship the ban causes for many Massachusetts residents. He sited the fact that the drug discount coupon page on the NeedyMeds website is one of our most popular pages, demonstrating just how important this information is to the many visitors to the website.

Past efforts to repeal the ban have been unsuccessful. It could be many months before we will know if the bill makes it out of committee and before the legislature.

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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. You 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: November 15, 2011 @ 11am ET November 30, 2011 @ 2pm ET

NeedyMeds in the News NeedyMeds continues to be in the news. Here are a few recent mentions: Fox Austin: http://bit.ly/nmq5pQ Kansas City News: http://bit.ly/nk1xu2

Click on the date you’d like to attend to register online or visit www.needymeds.org. Can’t attend either of those dates? We can tailor a webinar for your organization at your convenience. Email Elizabeth@needymeds.org for more information.

Pittsburgh WPXI: http://bit.ly/nC3A6I

Upcoming Conferences NeedyMeds will be chairing a new advocates track at the:

13th Annual Patient Assistance and Access Programs hosted by CBI This conference, widely known and attended by the PAP community, will be held in Baltimore on March 6-7, 2012. A variety of speakers will discuss various topics of interest to advocates and clinics such as: • Why PAPs are Offered • Safety Net Resources to Know About • Cost-Effective Tools and Technology to help Streamline Operations • Navigating Patients through the Changing Insurance and Health Coverage Landscape and • The Emerging/Evolving Professional Field for Patient Advocates More information on the conference can be found on the link http://www.cbinet.com/conference/ pc12127.

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Just facts PATIENT ADVOCATE NEWS

1. NeedyMeds offers more than 715 drug coupons for 688 medications.

2. There are more than 4,183 drugs and dosages on our Brand Name Drug list.

NOVEMBER 2011

3. We have more than 294 PAP applications available for download on our site.

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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 over 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 over-the-counter medications and medical supplies if written on a prescription blank, and pet prescription medicines purchased 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 Discount Card Partnership Are you already using the NeedyMeds Drug Discount Card to help save your patients money on their prescriptions? Or are you new to the card, but excited about providing it to the population you serve? It may be time for you to think about a NeedyMeds Drug Discount Card Partnership. This is an exciting collaborative opportunity we offer at no cost to over 75 other organizations, and invite your group to contact us about it. Some of our most recent partners include Annapolis Outreach Center, City of Lowell, Nadia's Arc, Youth in the Loop for Life Inc., Med Advocates, Lymphoma Research Foundation and CeCe Cares Pediatric Epilepsy Foundation.

What are the Benefits of a Partnership?

- Whether you are a health-based organization or not, this is a great way to have a direct impact on the population that you serve.

- With a co-branded card (your name and logo along with NeedyMeds), you can increase awareness of your organization and how you are contributing positively to your community.

- Receive monthly reports about how much your patients are saving, which provides you with data about how much you are helping the population that you serve.

Who Partners with Us? - Cities - Non-profit organizations - Health care facilities - Health advocacy organizations - Arts organizations - Many others

Please email outreach@needymeds.org for more information or if you’re interested in setting up a partnership.

PATIENT ADVOCATE NEWS

NOVEMBER 2011

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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/paprxtracker.htm.

Tracker Tips & Updates FAQs: Internet Explorer Compatibility View Q: I used to be able to alphabetize patient lists, now I can’t.

Q. I just set up a new user. When I tried to select his “Rights,” PAPTracker wouldn’t save my choices.

A. Both problems have the same easy solution. Be sure that Compatibility View (found in the IE Tools drop-down menu) is checked. That’s it!

Do you have questions? Need an explanation? Please drop Roberta an e-mail at: paprxtracker@needymeds.com.

PATIENT ADVOCATE NEWS

NOVEMBER 2011

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Meet Our...

Tonya White

PAP Research Associate

Vikki: Hi Tonya. Thanks for letting our readers get to know you. What did you do before working at NeedyMeds?

Tonya: Hi Vikki, I’m in graduate school and was looking for a job where I could help people in some way. I’ve had a variety of jobs, including working at pet stores and as a tour guide. I have geared most of my jobs toward working with people and I was happy to find this organization; I feel like I am really working to make a difference in people's lives.

Tell us about your role and responsibilities as PAP research associate.

I began by researching and updating many of our databases. I also fielded the helpline calls, and I appreciated this experience to work so directly with the people who need our help. It showed me more clearly what my work within the databases was providing to these individuals.

Now I update the information about the patient assistance programs. This is the most used portion of our website, so I have an opportunity to work at the heart of our information. I am in contact with the manufacturers who run these programs and update each program at least once every three months.

software is a great resource for advocates because it prints out the correct application for each program.

We have done our best to make the process as efficient as possible.

Can you tell us of an experience with someone that clearly brought home how important PAPs are to the underserved?

Wow, there are so many. One thing I hear a lot is that a caller or a caller's loved one has been picking and choosing which of his or her prescribed medications to take each month. This is especially true for those who fall into their coverage gap or “donut hole.”

These individuals along with many others are relieved to learn that there are patient assistance programs out there to help, as well as the NeedyMeds Drug Discount Card.

I often speak to advocates who are excited to learn that they can search for resources for their patients in one place. They are also very excited when we offer to mail them some NeedyMeds Drug Discount Cards, which give them something to physically hand to a patient in need, and I imagine that is very reassuring for both the patient and the advocate.

If you had a group of patient assistance program coordinators or administrators in a room, what would you tell them would make your job easier?

Finally, you have a background in the arts and are getting your masters degree in expressive therapies with a specialization in mental health counseling.

How do you think expressive therapy, mental health and NeedyMeds are interrelated?

It would great if the programs would update us about changes to their programs as soon as they happen, as opposed to us reaching out to them every three months for this information. This does happen with some of our program contacts and it is greatly appreciated. I also wish there was a “common” patient assistance program application. Programs ask for different information so this is not a simple idea, but it still sounds good to me! I'm sure it also sounds good to the many advocates who fill out applications for patients. In the meantime, PAP our PAPTracker

The connection between my work at NM and expressive therapy is, of course, helping people.

People have a basic need to feel heard. Just talking to a caller can be as important as the resources that we provide to them. It gives them hope to know that they actually do have somewhere to turn and there are people trying their best to direct them towards the resources that they need. Part of counseling is to direct clients to the resources they need. People have a variety of needs and I am happy to have the opportunity to help in more than one way.

PATIENT ADVOCATE NEWS

NOVEMBER 2011

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PAP UPDATES

MEET OUR STAFF

Eisai Assistance Program has a new application for Fragmin.

RICHARD SAGALL, MD President richsagall@needymeds.org

Together Rx Access has removed the following medications from its program: Allegra-D, Dexedrine Spansule, Exelon Patch, Focalin XR, Penlac Nail Lacquer Topical Solution.

Alcon Cares has removed the following medications from its program: AZO, Cyclogyl Otic and Duo Trav Eyedrops.

The Seasonique Patient Assistance Program has closed.

The following programs have updated applications on our website. Click on the program to view the program page: Colcrys PAP Neocate Assistance Program (NAP) J&J Patient Assistance Foundation Novartis Patient Assistance Foundation Program

ALANNA FLANAGAN Call Center Assistant 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

CYNTHIA FOOTE Call Center Supervisor cynthia@pap-apps.org

ROBIN HOFFMAN Database & Research Manager robin@needymeds.org

DAMARIS MERCEDES Bilingual Helpline Representative damaris@needymeds.org

SAMUEL RULON-MILLER Research Associate samuel@needymeds.org

ELIZABETH MESSENGER Outreach & Education Manager elizabeth@needymeds.org

TONYA WHITE Research Associate tonya@needymeds.org

JAYE VAN DUSSEN Vice President jaye@needymeds.org

VIKKI SLOVITER PAN Editor vikki@needymeds.org

KAREN GRENHAM Call Center Assistant karen@needymeds.org

Equetro PAP and Marplan PAP

www.needy meds.org

Xenazine PAP Angiomax Reimbursement and Patient Financial Assistance Program

INFO@NEEDYMEDS.ORG

Eisai Neurology PAP Abbott PAP for Marinol

CALL US 978-281-6666

Abbott Patient Assistance Foundation for Lupron Depot

FAX US 206-260-8850

Abbott PAF for Androgel, Creon and Prometrium We have added the following PAPs to our NeedyMeds database: Bristol-Myers Squibb Baraclude PAP

PATIENT ADVOCATE NEWS

WRITE US PO Box 219 Gloucester, MA 01931 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.

NOVEMBER 2011

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