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NEEDYMEDS

PATIENTADVOCATENEWS HELPING YOU AND YOUR CLIENTS ACCESS MEDICATIONS AND HEALTH CARE

FROM THE EDITOR Spring is in the air, and with spring comes allergy season. This month we will highlight allergies and asthma resources for you. Each month we will feature diseases/conditions as a way to highlight how our different resources can help. In this issue of PAN we talk about a resource you may not know about, our Camp and Scholarships database. And yes, there are camps and scholarships for kids and adults with allergies and asthma. There are also coupons for asthma and allergies – as well as a Disease Resource Page – which pulls together all the resources for those with allergies and asthma. You’ll also learn about a new webinar highlighting allergies and asthma resources. Additionally, readers will meet some interesting people – the founder of an online support group and one of our board members. As always, we like to hear your feedback. Is there anything with which NeedyMeds can help your organization? Let us know, we’d like to hear from you! Wishing you good health, Jaye Jaye@needymeds.org

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APRIL 2012

GET THE MOST OUT OF NEEDYMEDS

One of the newer resources on our website is the Camps and Scholarships database. Here we list more than 1,200 camps and over 200 scholarships. Being able to afford medication and health care is crucial to a patient’s wellbeing, but camps and scholarships help provide emotional support and overall quality of life.  Camps offer an opportunity for individuals to meet others who are experiencing similar challenges, as well as a chance to get away and have fun despite their health conditions. The majority of camps are intended for children and teens, but there are also camps for adults. Many camps accept siblings, family members, and/or friends of those with specific diseases, including many camps that are intended for those who are grieving the loss of a loved one. Camps are for individuals with a range of conditions from life-threatening diseases to mild disabilities. Scholarships address the challenges of those who have spent a lot of money on disease management. This can leave very little hope of accomplishing future goals. Organizations that provide these scholarships recognize the strength that these individuals have developed and that they are more than their diagnosis. Most scholarships are intended for postsecondary education but some may also be used for specialty schools, camp attendance, or other goals. 

To find a camp or scholarship, go to the NeedyMeds homepage, look under “Additional Resources” on the left and click on “Camps and Scholarships” (http://www.needymeds.org/cas.taf?_function=cas_camps). The camps and scholarships are listed separately. You may search for camps “By Disease.” If you wish to find a camp located in a specific state, you may click “By Camp Location.” If you want to see all of the camps that will accept campers from your home state, you may click “By Camps That Accept Campers From Specific States.” To find a scholarship you may search “By Disease” or “By Residency of Applicant.” If you work for a camp or scholarship organization and would like to tell us more about your organization for our interview section, please let us know! If you know about a camp or scholarship that is not yet listed on our website, please email us at robin@needymeds.org.

INSIDETHISISSUE SPOTLIGHT ON MY TREATMENT DIARIES

NeedyMeds

NEWS & UPDATES

TESTIMONIALS

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MEET NEEDYMEDS’ DON MAIER

DRUG DISCOUNT CARD

PAP UPDATES

NEEDYMEDS IN THE NEWS

PAPTracker

NEEDYMEDS STAFF

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NEEDYMEDS SPOT LIGHT ON ...

MY TREATMENT DIARIES Interview with Amy Ohm, Founder NeedyMeds: Thanks so much for being a part of this issue of Patient Advocate News! Your website, www. treatmentdiaries.com, is an online support group that offers an outlet for those living with a chronic disease. Tell us more about the website and what inspired you to start the site.

support those affected by chronic illnesses, we also support those living with a mental health condition, rare disease and life changing experiences. Because TreatmentDiaries does not offer medical advice, we are able to quickly add conditions as they are requested. We don’t discriminate when it comes to support – anyone and everyone are welcome!

Amy: TreatmentDiaries (TD) was inspired by my personal journey with a cancer diagnosis. The first thing I NeedyMeds: Tell us how you first heard about did after hanging up with my doctor was to Google the NeedyMeds. term “melanoma” in search of someone just like me. Amy: One of the users on TreatmentDiaries wrote Sounds simple, but it’s a daunting task and synonyabout their experience with NeedyMeds in their diary, mous with finding that needle in a haystack. Hence so we decided to contact you directly. A big focus the need for a social network centered on connecting of our mission is to align our users with helpful rethose with shared experiences sources in navigating an illness. when it comes to health-related NeedyMeds is a perfect fit, re... we believe offering the conditions. Whether you are the gardless of illness type, and we caregiver, patient, family member NeedyMeds Drug Discount enjoy offering your service to all or advocate – TreatmentDiaries of our users. Card to our users will help them is a safe and anonymous way feel better, despite their illness, NeedyMeds: You’ve recently to connect with those who unin reducing the burden of their partnered with NeedyMeds on derstand and offer insight and a drug discount card to offer to encouragement. medication expenses. the members of your site. Tell us how NeedyMeds: Since you started the you think this card will integrate into the website in September of 2010, you’ve grown signifiresources your site offers and will help your members. cantly with over 33,000 diary entries in 128 countries! What do you hope to get out of this new partnership? What do you think is different about your site that helps people suffering from a chronic disease? Amy: We believe illness is stressful on numerous fronts. Reducing the stress through personal connecAmy: As of March 12, 2012 we now have more than tions and the opportunity to encourage one another 40,000 diaries in 130 countries. We grow each and every day. TreatmentDiaries continues to be emergent through shared experiences is critical to individual because of its unique qualities. TD takes into account wellness. The cost of navigating illness is another the complexity of users when it comes to illness-relat- factor and we believe offering the NeedyMeds Drug Discount Card to our users will help them feel better, ed experiences. The experiences shared on TD typidespite their illness, in reducing the burden of their cally reflect multiple conditions. For example, I might medication expenses. be on a journey with breast cancer which has led to

anxiety and depression. I might also have a child with ADHD, a spouse with type 2 diabetes and a parent with Alzheimer’s and another with heart disease. This user would be registered for no fewer than six conditions on TreatmentDiaries and receiving support and encouragement on numerous fronts. We made the conscious decision to support any illness and any role in navigating an illness. Lastly, not only do we

NeedyMeds: Much like NeedyMeds, your site is a resource for not just those suffering from a chronic disease, but family members, friends, caregivers, and patient advocates. Why do you think that this is important?

Amy: Everyone is touched by illness, either directly or indirectly through family and friends. Understanding Cont’d on next page

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NEEDYMEDS SPOTLIGHT ON ... cont’d how to support someone through an illness is difficult unless you have had firsthand experience. For family, friends and patient advocates of those on a journey with illness, reading the diaries of those with a medical condition can help provide perspective. Having an outlet as a caregiver is important, too! Caregivers are in desperate need of support with little time to attend a physical support group. The opportunity to join a virtual group and to connect anonymously makes for the perfect environment in receiving much needed encouragement and support at any time of the day. NeedyMeds: Members of your site have the opportunity to have profiles and be part of a community. Would you say that the social media aspect of your site is a sign of things to come, the future of patient advocacy? Amy: We do believe this to be true. Individuals with chronic illness are living longer than ever. There is a growing need to connect with those who understand. These individuals not only have a real need to be connected to a network of like-minded folks, they are often without friends and family and confined to the home or surrounded by those who don’t understand their illness. Also, learning from others on a global level allows them to advocate better for themselves. Firsthand knowledge from others on a similar journey and the ability to not only receive but provide support is empowering and can improve wellness. This is social networking with purpose!

National Take-Back Initiative The Drug Enforcement Administration has scheduled another National Prescription Drug TakeBack Day which will take place on Saturday, April 28, 2012, from 10:00 a.m. to 2:00 p.m. This is a great opportunity for those who have accumulated unwanted, unused prescription drugs, to safely dispose of those medications.

Some sites are partnering with NeedyMeds to offer our Drug Discount Card as an incentive to participate. Contact Julie at Julie@ needymeds.org to arrange a partnership in your area.

NeedyMeds

NeedyMeds: Hospitals are also starting to utilize your site as they discharge patients. Do you see this as a significant use of your site in the future? Anything else on the horizon? Amy: We do see this as a growing trend. TreatmentDiaries will be an integrated option with the GetWellNetwork this summer. The GetWellNetwork is an interactive patient care portal deployed within hospital infrastructures to improve the patient experience. TD will be the default support option; connecting patients and families upon diagnosis with those who share their condition and experience. We have also seen an upward trend with cancer treatment centers and their use of TD with mentors, social workers, families and patients. The reality is illness affects everyone and unfortunately there is growing demand when it comes to supporting those who feel alone. Our goal is to address this market with the very best approach of connecting real people with real experience. Your diary… Shared healing.

Testimonials Don’t just take our word for it — see what our DRUG DISCOUNT CARD users are saying...

Thank You!

“NeedyMeds.org is a great site to go to if you need help with meds.” “Great website for those without drug insurance. Also has coupons that you can use with or without insurance.” “If you can’t afford your medications, try this site.” “I found it after our pension stopped paying for health insurance. It’s very easy to use. Not perfect but it really helps.” Editor’s note: Our website and resources are for people with health insurance too!

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NEWS

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DID YOU KNOW WE OFFER FREE WEBINARS? During a NeedyMeds webinar, you will learn how to navigate the NeedyMeds website more efficiently to help yourself and others, and you will be presented with an overview of the many different resources available. Some of this information may be overlooked by visitors to our site, 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: Thursday, April 5, 2012 @ 3 p.m. ET Tuesday, April 17, 2012 @ 11 a.m. ET Click on the date you’d like 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. We also offer special-topic webinars. See page 5 for details on our next session.

UPCOMING CONFERENCES — STOP BY AND SEE US! 2012 ASCO Annual Meeting – June 1-5 in Chicago, IL The ASCO (American Society of Clinical Oncology) Meeting brings together more than 30,000 oncology professionals including physicians, nurses, researchers and patient advocates, all exploring the theme of this year’s meeting “Collaborating to Conquer Cancer.” This is the first year that NeedyMeds will be in attendance. We’re excited to have a booth at the annual conference and have the opportunity to share the cancer resources available on the NeedyMeds website. Click here for more information: http://chicago2012.asco.org/Home.aspx 20th Annual NALBOH Conference – August 8-10 in Atlanta, GA The 2012 Annual NALBOH (National Association of Local Boards of Health) Conference is designed to provide attendees with information about past health achievements, current public health priorities and the role of governance in shaping the future of public health. NeedyMeds will be exhibiting at the conference. With our recent growth in community partnerships, we’re hoping to expand our resources to more cities and towns and begin working with Boards of Health around the country. Click here for more information: http://www.nalboh.org/NALBOH_Conference.htm NAFCC 2012 Annual Summit – October 22-24 in San Antonio, TX The NAFCC (National Association of Free & Charitable Clinics) Annual Summit is an opportunity for both NAFCC members and other related organizations like NeedyMeds to come together and discuss the issues currently facing clinics, as well as successes and best practices. NeedyMeds has attended the Summit before and is excited to return both as an exhibitor and an official partner of NAFCC. We know that many clinics use our resources and we hope that we can continue to help them in the important work that they do. Click here for more information: http://www.nafcclinics.org/event/nafc-2012-annual-summit

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NEWS

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SPECIAL-TOPIC WEBINAR Do you suffer from Asthma & Allergies? Or do you work with a population that does? Join us for the next Special Topic Webinar that will include an overview of the different resources on www.needymeds.org with a focus on the programs available to help those with Asthma & Allergies. The next Special-Topic NeedyMeds webinar is: “Asthma/Allergies Resources” Wednesday, April 11, 2012 @ 2 p.m. ET

WHAT WE’VE BEEN WORKING ON

We continue to work on our outreach in nearby Massachusetts communities and recently reached out to the significant Cambodian community in Lowell, MA. In response to needed materials for the community, we are translating our materials into the Cambodian language, Khmer. Feel A Sample of Khmer: free to get in touch with us if you’d like us to consider translating our NeedyMeds មានព័ត៌មានអំពីកម្មវិធីលើសពី brochures into an additional language. 4,000 (NeedyMeds has information on more than 4,000 programs)

We recently attended the annual CBI PAP Conference in Baltimore. NeedyMeds has attended this conference for the past several years, but we were thrilled to chair a new Safety Net Resources Track designed for advocates. Attendees of our track were able to hear from their fellow patient navigators and gain tips on best practices for helping their patients. There was also a lively discourse between the PAP managers and the patient advocates about the inner workings of the patient assistance programs. The track was well received and we hope to chair a similar track next year with new content and presentations. Much like the rest of the country, the conference discussions swirled around health care reform and the effect that it will have on patient assistance programs. No one has the answers, but take a look at this blog post from Pharmexec.com for some insight into what was debated at the conference and an analysis of the future of PAPs. http://blog.pharmexec.com/2012/03/12/ patient-assistance-programs-are-they-still-relevant/

NeedyMeds

NeedyMeds at the CBI Conference. From left to right: President Rich Sagall, Julie Kautz Mills, Tonya White and Elizabeth Messenger.

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MEET OUR... STAFF

DON MAIER NeedyMeds’ Interim Chairman of the Board NeedyMeds: What is your professional background? Don: I’m a physician who specialized in reproductive endocrinology and infertility, which is a subspecialty in obstetrics and gynecology. I was the director of the program at the University of Connecticut, so I also was involved with training students, residents, and fellows and with doing research. It was a really rewarding career. NeedyMeds: Recently you moved from Connecticut to Rockport, MA. What prompted that move? Don: I retired soon after I reached 55 so I could move on to other things in life. Rockport is where I spent my summers as a kid; my family has had a house here since the early 1900s, and it’s always been a place to go to for getting away and relaxing. We couldn’t think of a better place to retire to, so we moved up the day after I stopped working. NeedyMeds: How did you find your way to NeedyMeds? Don: I was looking around for things to do, and I had given my name to SeniorCare. That’s a Gloucester organization that connects people or organizations with people who want to volunteer. NeedyMeds had a request for volunteers, and SeniorCare linked me with them. The rest is history. NeedyMeds: What different hats do you wear for NeedyMeds? Don: I volunteer working on some of the website databases (Disease Based Assistance, Camps and Scholarships). I am also on the Board. It’s been interesting seeing different aspects of NeedyMeds from those different angles; it’s especially useful to see the inner workings to help NeedyMeds grow and mature. NeedyMeds: You are a popular guy on Boards here in Gloucester! What other volunteer work do you do? Don: I am also on the Board of the North Shore Health Project. I also started there as a volunteer answering phones, and now find myself president of the board. Just like with NeedyMeds, it’s very useful to see things from different angles. NeedyMeds: What challenges do you think NeedyMeds faces? Don: There are so many valuable services that we provide that it’s difficult to figure out where to concentrate our efforts. It’s also difficult to know how health care economics will change in the future, Cont’d on next page

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MEET OUR... STAFF ... cont’d although it seems clear that there will be many opportunities (perhaps even more than there are now) for us to continue to help people with their health care costs. NeedyMeds: What do you see in the future of NeedyMeds? Don: I hope (and expect) that we can raise awareness of our services on a national level. Anyone who hears about what we do is impressed, but the “problem” is that no one thinks to Google “an almost magic card that can save money on prescription costs” or “a comprehensive listing of all the organizations that will help me reduce the expenses for my disease” because people can’t imagine that those things are out there. Eventually we’ll get even more widely known. NeedyMeds: What do you do for fun when you are not sitting in board meetings? Don: Retirement and grandparenting happened around the same time. Our daughter, her husband, and their 2-year-old and 5-year-old live nearby, and we babysit at least one day a week. It’s even more fun than taking care of your own kids – kids tend to be better behaved with their grandparents than with their parents, and we always sleep through the night. We have another 2-year-old grandson in Philadelphia who we see quite often, and a son in Brooklyn who, while he doesn’t have any kids, has an extra bedroom for New York visits. Besides lots of family things, there’s the beach and other great Cape Ann things to do. Life is quite good, and the free sandwich at the Board meeting is the icing on the cake.

NEEDYMEDS IN THE NEWS NeedyMeds continues to be in the news. To read all the news articles and view television clips about NeedyMeds, visit: NeedyMeds in the News Here are a few recent mentions: In Gloucester Daily Times Gloucester-based NeedyMeds hit $1M mark saving money on prescriptions On YouTube Rich Sagall Hartford Interview In Chelmsford Independent Cost-saving program gets under way in Chelmsford On NJ Voices Guest Blog/Policy Watch Patient assistance programs help people cover copays, get needed prescriptions Univision, Spanish Language Television Network WVEA – Rich Sagall

Congratulations to new grandfather Bill Kyrouz and his wife, Cathy. Nolan Alec Arnold was born March 5, 2012 weighing in at 9 lbs. 14 oz. Bill is a research associate for NeedyMeds.

NeedyMeds

Health Literacy Out Loud Podcast “Advocacy – From Aha to Action” Interview with Rich Sagall MD

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DRUG DISCOUNT CARD The NeedyMeds Drug Discount Card saved users about $1,000,000 in the month of February

Clip, Print and Save NeedyMeds Drug Discount Card

BIN: 600428 RX PCN: 05080000 RX GRP: 05360001 ID: NM0903150000

NeedyMeds Drug Discount Card www.needymeds.org Patient: Simply present this card to a participating pharmacy to receive a discount on your prescription. Patients who have Medicare, including Part D, Medicaid or any state or federal prescription insurance can only use this card if they choose not to use their government-sponsored drug plan for their purchase. The card is not valid in combination with those programs. For questions concerning the card, call 1-888-602-2978 or visit www.drugdiscountcardinfo.com.

This is a drug discount program, not an insurance plan.

Pharmacist: Card must be presented to receive program benefits. Clear system of prior cardholder information associated with this universal cardholder ID. For processing questions, call Argus Health Systems at 1-866-921-7284.

THE NEEDYMEDS DRUG DISCOUNT CARD

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 62,000 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 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 TIP Are you an advocate or health care professional working with patients who are not U.S. citizens? The NeedyMeds Drug Discount Card may still be able to help them! Since no personal information is taken when using the card, anyone can use it. Just make sure they bring it to a participating pharmacy within the United States and its territories. A valid prescription is required, as always. Remember, you can always call the toll-free drug discount card helpline number if you ever have questions at (888) 602-2978.

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PAPTracker

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 or email paptracker@needymeds.org.

TRACKER TIPS & UPDATES — “HOW DO I...?” PAPTracker software helps provide exceptional service to your PAP participants. Be sure that you are taking advantage of Tracker’s outstanding features. Drug Value Summary Report Tracking the dollar value of your PAPs and demonstrating your savings is a snap. Here’s how: When you create a new order or a refill, be sure to enter the number of units (tablets, vials, inhalers, etc.) you are ordering in the Quantity box. (If you leave the Quantity box blank, the value of the order will be $0). To create a Drug Value Summary Report, go to Reports --> Printed Reports. Click on Popular and then on Drug Value Summary by Location. Configure the Drug Value Report by date, patient, location and drug. Then click View Report. Your report will be created in Adobe Acrobat and can be printed and saved.

NeedyMeds

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PAP UPDATES

The following programs are new: • VSL#3 DS Medical Food Patient Assistance Program • Arbor Patient Assistance Program • Bayer Patient Assistance Program for Beyaz, SAFYRAL, and Natazia The following programs are closed: • Astellas Access Program (AMEVIVE) - Program closed due to medication being discontinued. The following programs have updated or new applications: • Amylin Reimbursement Hotline • Colcrys Patient Assistance Program • Arbor Patient Assistance Program • Macugen Access Program • Rx Outreach Medications • Novartis Patient Assistance Foundation Program • Dey L.P. Patient Assistance Program • Bayer Patient Assistance Program for Beyaz, SAFYRAL, and Natazia • TOBI CARE Patient Support Program • Kowa Patient Assistance • ABH Cares • Pfizer Connection to Care • Pfizer FirstResource • Nexavar REACH Program • Synvisc Connection Personalized Reimbursement

HEALTH FAIR MATERIALS Are you planning to host a health fair or other health-related event? NeedyMeds can send drug discount cards and other related literature for distribution to help people save on their medications and health care costs. Just send your request to dianne@ needymeds.org or use our online order form at http://www.needymeds.org/order_form.taf.

NEEDYMEDS STAFF RICHARD SAGALL, MD President richsagall@needymeds.org ALANNA FLANAGAN Call Center Supervisor alanna@needymeds.org

KAREN GRENHAM Call Center Representative karen@pap-apps.org

BILL KYROUZ Research Associate bkyrouz@needymeds.org

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

DAMARIS MERCEDES Bilingual Helpline/Research Associate damaris@needymeds.org

ROBERTA DOWNEY Software Sales Manager roberta@needymeds.org

DIANNE OFFICER Administrative Asst./ Research Associate dianne@needymeds.org

ROBIN HOFFMAN Database & Research Mgr. robin@needymeds.org

ELIZABETH MESSENGER Outreach & Education Mgr. elizabeth@needymeds.org

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

JAYE VAN DUSSEN Vice President jaye@needymeds.org

SAMUEL RULON-MILLER Technical Specialist samuel@needymeds.org

JULIE KAUTZ-MILLS Director of Outreach julie@needymeds.org

TONYA WHITE PAP Associate tonya@needymeds.org

NeedyMeds EMAIL info@needymeds.org OFFICE 978.281.6666 FAX 206.260.8850 ADDRESS PO Box 219 Gloucester, MA 01931

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PAN Resources for Asthma and Allergies