PATIENTADVOCATENEWS EDITOR’SNOTE
NOVDEC2010
News and information about patient assistance programs and other health care assistance Do not ask the name of the person who seeks a bed for the night. He who is reluctant to give his name is the one who most needs shelter. — Victor Hugo The season of giving is often a difficult one for underserved families. Not only must they endure the year-round struggle to provide food, shelter and health care for their loved ones but also many must battle colder temperatures, increased heating bills and growing children who need new winter coats and boots. For many, this season of giving is more like a season of needing; there is no money to give gifts but a greater need to receive additional assistance. And they are embarrassed to ask. Fortunately there are many nonprofit organizations that provide such families with additional assistance this time of year. And there are many individuals, including you, who continue to provide assistance year round. Thank you for your continued dedication to helping others. We hope you have a healthy and happy holiday and New Year. Vikki Sloviter - Editor
Neel Shah, MD, MPP, founder and executive director of Costs of Care, a new nonprofit aimed at helping doctors recognize the costs of their care, contacted us recently to let us know about his organizationʼs essay contest that invited medical professionals and consumers alike to describe an experience with the costs of their medical care. I was thrilled to interview Neel to learn more about this important organization (www.costsofcare.org). Vikki: When I first looked up your organization online I couldnʼt help but mentally compare you to Atul Gawande, MD, the best-selling medical author who has pulled back the sheets on how doctors practice medicine in this country (and who was one of your essay contest judges). It seems that your new nonprofit also aims to pull back the sheets on the costs of medical care. What was your “A ha!” moment that made you realize you needed to start this organization? Neel: As a medical student I had the opportunity to train at some of the leading academic medical centers in the country alongside some of the most caring and compassionate doctors you can imagine. But I noticed that even the best doctors often
neglect something critical—the bill. Medical bills are a leading cause of personal bankruptcy in our country and, as doctors, we decide what goes on the bill. The problem is that doctors rarely understand how the decisions they make impact what patients pay for care. That is what we are trying to fix. “Pulling back the sheets” on the costs of medical care is an apt metaphor for what we are aiming to do. Since weʼre living in a very multimediaand Internet-based age, your organization plans to use these technologies to advance its mission by essentially giving doctors the ability to see the exact costs (Continued on next page)
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of their medical decisions at the point of delivery, and to hopefully make the most cost-efficient choices. Explain exactly how this technology will work. Sure! The whole point of information technology is to make information available where it is supposed to be, when it is supposed to be there. Often, when doctors make decisions, information about the costs their patients face is not readily available. One of our solutions will use a mobile application with menus of prices to help doctors and patients make decisions together about how they want to proceed. We want patients to get tests they need to get better. But, when you order from a menu without any prices, itʼs easy to get the filet mignon at every meal. If I patched together your bio correctly, youʼre a newly minted doctor, having recently received your medical degree from Brown University and public policy degree from Harvardʼs Kennedy School of Government. In fact, youʼre a first-year ob/ gyn resident at Brigham & Womenʼs Hospital in Boston. Some—especially doctors—may argue that youʼve only just started practicing medicine, so how can you possibly know or understand the decisions doctors make regarding costs of care. How would you respond to such criticism? I certainly recognize that I donʼt have all the answers. At this point, once doctors and patients have information about the costs of medical care, I am agnostic with regard to how this information should be incorporated into their decisions. But at least knowing what the costs are is an important first step to making our health care system more
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transparent, and I think most doctors and patients who are on the frontlines recognize this. Through our social media campaign, we have had the opportunity to engage thousands of doctors, nurses, and patients who agree health prices should be available at the point of care, and this is very motivating. This countryʼs current medical model is primarily based on fee-for-service, where doctors earn more if they see more patients, order more tests and perform more procedures. Yet Costs of Careʼs mission, vision and product go against these very standards. Playing devilʼs advocate, how do you expect doctors to comply with, and eventually embrace, an innovation that will earn them less money and give them less control? I donʼt necessarily think that controlling the costs of care will lead to less reimbursement or control for doctors. In my view, the root problem is not that doctors make too much money or have too much control. The problem with regard to doctorsʼ role in the rising costs of care is that they are forced to make decisions in a vacuum, without any sense of how their decisions impact what patients pay. Doctors do care about the financial health of their patients, and I think reframing the health care cost debate in terms of the doctor-patient relationship—in terms of how their decisions impact a patientʼs financial health—will be the key to our success. The costs of health care in this country are no mystery to anyone who has been paying attention, or anyone who has experienced first-hand the results of not receiving adequate care or the inability to (Continued on next page)
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pay for their care. What are your concrete goals for Costs of Care? How long do you think the “paradigm shift in medical decision making” will take? And do you have a dollar, or percentage, amount that you would like to see saved when doctors use the information technology described in your vision statement? We know that $700 billion dollars are spent each year in the United States on tests and treatments that donʼt help patients get better (that is almost the amount of money we spent on the Iraq war). Clearly, there is a lot of room to be more thoughtful, and a lot of money to be saved. We are currently at a tipping point with regard to health care costs, and as I said before, I think transparency is a necessary first step. Information technology has enabled a type of transparency that previously wasnʼt possible, and has the potential to be highly accessible, scalable, and disruptive. Iʼm confident that grassroots efforts such as ours will help change the culture of medicine within the next ten years and lead to billions of dollars saved for patients and our country as a whole. Speaking of costs, how much will this information technology—presumably an iPhone app or other portable electronic device or software application—cost? Who is funding its development, who will be expected to pay for the product, and how much will the actual product expect to cost? Our products, including the iPhone app, will be funded with grant support from foundations as well as private donors. We have not yet set a price point, but as a nonprofit our goal is to make our service accessible, not to maximize revenue. Founding a nonprofit as a medical student is a seriously ambitious venture, and surely you canʼt devote as much time to it as youʼd like. How much time are you
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able to spend on the Costs of Care and what are your long-term plans for the organization? Thatʼs a lot of questions! In a sense, I spend all of my time on Costs of Care since my day job as a doctor provides the perfect laboratory. Treating patients also helps me stay grounded and motivated. I donʼt think there is a silver bullet to controlling health care costs. We need leadership from our policymakers, but there is also in important and on-going role for doctors and patients to play with regard to the everyday decisions they make. My goal is to grow Costs of Care into a national platform that will examine and develop the role of doctors and patients in a sustainable way. Finally, what reading materials are on your nightstand now? The only reading on my nightstand at the moment is medical journals—I am still a doctor in training, after all.
NEW RESOURCE PAGE: ANKYLOSING SPONDYLITIS Ankylosing Spondylitis (AS) is a form of arthritis that primarily affects the spine, although other joints can be involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. In the most severe cases, the spine becomes fused in a fixed, immobile position, sometimes creating a forward-stooped posture. We now have a new disease resource page for AS, where you can learn more about the condition, see meds that help treat it, and learn of other resources that help those with AS and their families. Visit our website to learn more!
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HOW DO I...?
PAPTRACKER TIPS, NEWS AND UPDATES
Spend time with your patients, not with your paperwork! Web-based PAPTracker software completes PAP applications electronically. Enter patient and doctor information once and PAPTracker does the rest. PAPTracker automatically creates refill reminders, too! Qualifying nonprofit organizations may be eligible for grant support to offset software subscription fees.
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ARE LIMITED BENEFITS BETTER THAN NONE AT ALL? You may know the new health reform law will completely ban insurersʼ annual spending limits in 2014, and until then the limits are restricted; it is $750,000 per person this year and $2 million in 2012. But more than 1.5 million Americans who have limited-benefit plans, some of which max out at just $2,000 per year, are receiving notices that say their insurer may be exempt from the new limits and will continue to provide limited benefits because complying with the new mandate would result in “significant” premium increases or cause their members to drop or severely limit coverage. Some argue that some coverage, even if itʼs limited, is better than no coverage at all, while others know that a $100-a-day hospital coverage doesnʼt provide more than two aspirin. Those who have limited coverage are also often at a disadvantage because they are ineligible for many medical assistance programs, which require that applicants be uninsured, not underinsured.
THERE’S AN IPHONE APP FOR THE DISCOUNT DRUG CARD! Not all needy patients are the same. While many of those that we assist may barely meet the federal poverty level and don’t know how they’re going to feed their families, others may be more comfortable but have recently lost their jobs and can’t pay for their costly prescriptions out of pocket. For the gadget-loving patients who, though they may have lost their employer-sponsored health insurance still have their iPhones, we have an app for them. NeedyMeds’ drug discount card is available as a free iTunes application. With the iTunes app, patients can show the pharmacist the app on their iPhone or iTouch (just like showing them the actual card) and receive discounts on their prescription medications. Click here to download the free NeedyMeds drug discount card app. (For a printable paper copy of our card, see the top of this page or visit our website, www.needymeds.org.) As always, the card and app are free to download and use.
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One of our readers, Tracy Shantz, Program Director of Phoenixville Healthcare Access Foundation, contacted us and wanted her fellow patient advocates to learn about her community-based organization. We were happy to talk with her. Vikki: Phoenixville is a borough in Chester County, the highest-income county in Pennsylvania. Tell us how and why there is a need for your organization. What are the history and mission of the Foundation? Tracy: Yes it is true about Chester County being wealthy, and that is what you始ll hear through the media. But those of us who work in the field know that there are pockets of low-income areas throughout the county as well. This fact has been well documented by several local studies. The need for assistance is here. We also serve parts of Montgomery County, PA. Our mission is to improve the health and quality of life of the greater Phoenixville Area by helping residents obtain the health care services they need. The program started as a dental program for uninsured/under-insured children. Then the vision and prescription programs were added. In 2005, we expanded the dental program to include adults. In response to an identified need, the emergency orthopedic program started in July 2008. How does Health Care Access work, who is eligible and what is the application process? The application process is simple; we are all about access to care. We have a paper application that needs to be completed, and proof of income and residency are the only other documents we require. You need to reside in our service area (19 townships and boroughs surrounding Phoenixville), fall into our program始s financial guidelines and not have insurance for the services we offer. Our
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foundation provides the funding for vision, dental and emergency orthopedic care, as well as prescription medications. I noticed that Health Care Access offers vision, dental, prescription and orthopedic assistance, but not general medical assistance. Why? We are lucky to have a free medical clinic in Phoenixville that offers medical care, and there are also several medical clinics in surrounding communities. Our goal has been to fill in the gaps of care that insurance doesn始t always cover. In fiscal year 2008-9, the Health Care Access Program helped 228 clients obtain medications through prescription assistance programs and 278 clients get eye exams and/or glasses, among other achievements. Typically how many people request assistance and how many are able to obtain it? How do you assist those who aren始t eligible for your services? In the past few years we have not had to turn anyone away who is eligible for our programs. At one time we did have a waiting list for routine adult dental care, but that has been eliminated. So far we are able to keep up with the demand. We have grown from a two-person staff working in a one-room office to a six-person staff that works in a suite. We keep expanding our staff and capability to be able to serve an increasing number of needy residents. In 2009, 99 children and 303 adults received dental care. Our prescription program helped 207 new clients complete 938 PAP (Continued on next page)
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applications, we helped over 300 ongoing clients obtain refills (1,549 refill requests), and another 150 clients with emergency supplies of medications. Our vision program served 321 children and adults and 11 clients received emergency orthopedic care. Our numbers fluctuate but usually increase every year. Over the years we have been able to develop an information base about surrounding community resources so we can refer callers that are not eligible for our programs to other agencies. The Health Care Access programs are based on the Community Resource model. Tell us more about what that is, and how it works. As you know, we are not a clinic; we tap into already-existing resources in the community. We partner with local dentists, eye doctors and an orthopedic specialist to provide the care to our clients and bill our program. The providers have all agreed to accept a discounted fee for service. This relationship keeps the cost of care low, allows clients to obtain care in their local area, and gives local providers the opportunity to fulfill their philanthropic commitment to the community. Through our prescription Program, we network with all the local medical doctors in helping clients complete patient assistance applications via drug companies to obtain medications at no cost. So we provide a service to the local physician offices as well. Two local pharmacies give our program a discount on the cost of medications for clients that need a script filled immediately. We look at our agency as part of a real community effort that meets the needs of the lower-income uninsured/under insured residents. Health Care Access始s primary source of funding is the Phoenixville Community Health Foundation. What percentage of
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funding do they provide and what other sources of funding to you receive? How do you raise money? We are fortunate that the Phoenixville Community Health Foundation (PCHF) shares our mission. They were instrumental in the development of our programs and remain committed to funding us. However with the economic changes, and the increase in request for grants, the PCHF needs to cap the amount of funding they can provide. Our Foundation board recently decided to hire a part-time fundraiser/development person so we can increase our efforts. The local Phoenixville Hospital, Delta Dental, local churches, and other local foundations and individuals provide funding for our programs, but the PCHF still provides over 90% of our funding. What have been some of the biggest challenges Health Care Access has faced, and how did it overcome them? One of the biggest challenges has been the overwhelming dental needs of uninsured adults. Adults who struggle financially don始t routinely visit the dentist; they often seek care when they experience a dental problem that has developed into an emergency. Dental care is very expensive, and we have had to limit the scope of care for adults. The dentists that work with our program have been very helpful with our clients始 needs and the reality of care limitations. As most of your readers know, Medicare recipients who find themselves in the coverage gap continue to have difficulty enrolling in PAPs and other ways of obtaining their medications. Finally, Health Care Access recently celebrated its 5th anniversary. Where do you see the organization five years from now? And, how can our readers learn more about it?
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DR. GARSON’S WAYS TO IMPROVE HEALTH CARE
We have actually been providing services for the past 10 years, incorporated for the last five. Despite all the pending changes with insurance options, I see our programs operating as usual in five years from now. Medicare and Medical Assistance through the state does not always cover vision, dental or prescription medications. I believe those gaps in coverage will remain and our programs will still be needed. We are doing our best to keep up with the demand, and I only see it increasing.
You may not agree with him, but Dr. Arthur Garson, Jr., executive vice president and provost of University of Virginia, who happens to be a pediatric cardiologist and past president of the American College of Cardiology, has strong opinions about health care in this country. In a recent interview with Kaiser Health News, he explained what’s wrong with our health care system and how we can improve it.
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Thank you so much for letting us share our story. We hope the success of our program model can inspire other communities to duplicate it or parts of it throughout the country. Visit our website at www.phcafoundation.org.
got info? Did you found, or do you work for, a nonprofit organization that helps people pay for medicines or provides medical assistance? No matter how large or small your organization, we want to hear from you. Help spread the word about the impact your organization has on its community. Email Vikki@needymeds.org if you want to be interviewed for a future issue of Patient Advocate News.
First, he clarifies that there is a difference between medical care and health care. The practice of medicine (“what doctors and nurses do”) in this country is pretty good. But the system of health care is terrible (to wit, we rank 45th in life expectancy and infant mortality). Two ways to improve our ranking in these health care indexes are to improve Americans’ lifestyle and access. Garson says we will live longer if we don’t smoke, aren’t obese, don’t do drugs and don’t kill each other. We will improve our access to health care if we can see health care providers when we need to. But how do we do this? Garson believes patients should be “part of the medical workforce” and, for example, should have higher premiums if they continue to smoke or weigh 300 pounds. He believes the role of nurses can be expanded, and he believes in training nonprofessionals—specifically grandparents—to provide low levels of homebased medical care (under professional supervision of course). To read the full interview, visit www.kaiserhealthnews.org.
Feel free to make copies and distribute our card to your patients. Card Front
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Card Back
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After the publication of the April 2010 issue of Patient Advocate News, Denise Sitarik, VP of J&J Patient Assistance Foundation, contacted us. She wanted our readers to learn more about how the PAF has been revamped over the past two years, and about a new patient service that was recently launched. Vikki: I’ll admit, when I received your email and saw you were from J&J, I was a bit hesitant to feature your program. Some of our readers may share a similar bias, or concern, that the Johnson & Johnson Patient Assistance Foundation is just an arm of the pharmaceutical company, and we typically feature small nonprofits. I don’t want our readers to think I’m providing J&J free advertising by interviewing you. So assuage my, and our readers’, concern and tell us about the history and mission of Johnson & Johnson Patient Assistance Foundation, Inc. (JJPAF). Denise: Thanks for the opportunity to explain. The Johnson & Johnson Patient Assistance Foundation, Inc. (JJPAF) is actually a separate legal entity that is charitable in nature and that operates independently from the corporation. For some twenty years, our operating companies have been providing medicines to patients in need, but through individual, company programs. In an effort to provide comprehensive, streamlined access for patients and providers, to the products donated by Johnson & Johnson operating companies, we have reorganized and now provide access to all products through one phone number and a single application. The JJPAF website is really easy to navigate and clearly directs users to the right channels to receive the information they need. What roles do the Internet, technology, and patient computer literacy have in the PAF?
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Not all of the patients and providers who access our programs have computers or regularly use the Internet. We have worked extremely hard to make the JJPAF site easy to use. Our goal is to have those individuals with minimal computer skills feel comfortable with the system. We have also included our call center phone number on each page so that if a patient needs to speak to someone live, the phone number is easily accessible. I noticed that the income eligibility criteria are different for self-administered products than for physician-administered ones. Why? We recognize that the physicianadministered medicines are more costly than self administered medicines. In order to provide appropriate access we have two tiers of financial eligibility. I also noticed that the medicines you offer are provided in different ways. Why is that? We strive to provide our patients and providers with the highest level of service possible. We offer a pharmacy card to quickly put medicines available at the retail pharmacy into the hands of patients who need them. Products that require administration by a healthcare professional are shipped directly to the physician’s office. We are committed to finding the best delivery solution for each product we offer. Vikki: Some of the medicines available through your physician based program (Continued on next page)
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are part of your Hospital Patient Assistance Program. Tell us more about that program, and how it’s related to JJPAF. In addition to our office-based program, we also offer our Hospital Access Program to Disproportionate Share Hospitals (DSH) and DRG Exempt institutions that provide healthcare and medicines to a large volume of patients through their outpatient facilities. The volume of patients in these facilities makes it difficult to manage the individual application process and the hospital already determines eligibility for “free programs” based on specific criteria. The JJPAF provides medicines to those patients that meet our office-based program eligibility criteria. JJPAF ships the medicine to the outpatient pharmacy for dispensing to the patients using a bulk replacement process. We do perform an annual audit on participating hospitals to ensure compliance with Foundation contracts and procedures. Since the PAF is a nonprofit charitable organization, what are its primary sources of funding? The medicines are donated by Johnson & Johnson, but how does it fundraise for the overhead and administrative costs of running the program? JJPAF is a private 501C3 and it does not seek public funding. The administrative costs are supported through donations from the Johnson & Johnson Family of Operating Companies. JJPAF has fielded more than 400,000 phone calls over the past two years and has helped more than 300,000 patients obtain the medications they need free of charge. What percentage of people who need meds and contact JJPAF qualify? And what advice do you give those who don’t qualify? Generally, over 90% of those that apply qualify for assistance, for third quarter 2010
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the percentage was 93%. When an individual does not qualify for our program, we may refer the patient to an alternative program for which she or he may qualify. Finally, what are JJPAF’s goals for the future? What is the new patient service that it plans to offer this year? How does it plan to further expand its program, and what can patients and advocates look forward to from the JJPAF? We are closely following developments related to Health Care Reform to see how implementation may impact access for patients. We are also very excited about the development of the JJPAF “Provider Portal.” Our web-based provider portal will allow providers access to real-time information about their patients enrolled in our program. The benefits to providers include the ability to submit patient applications electronically, obtain easy access to all patient-related information regarding status and eligibility, track shipments, receive alerts that highlight important tasks and events to expedite patient treatment, download forms, and electronically sign prescriptions. This will be especially helpful for those facilities that treat large numbers of uninsured patients. The provider portal successfully launched on September 29, 2010. In closing, I’d just like to say that the Johnson & Johnson Patient Assistant Foundation, Inc. is committed to assisting patients, who lack prescription coverage and adequate financial resources, obtain free medicines and therapies donated by Johnson & Johnson operating companies. For more information, readers can call 1-800-652-6227, or visit www.jjapf.org and www.jjpaf.org/provider-portal. Love NeedyMeds? We can’t provide all our services for free without your support. Consider a donation today. Thank you.
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PAPUPDATES Flexeril is no longer on the Johnson & Johnson PAP due to an extended backorder. J&J PAP will send a notice to enrolled patients and no new patients will be enrolled for this drug. Krystexxa Connexxions PAP is a new program. Application is available on our website. As of 12/1/10, the Pfizer Connection to Care program has absorbed the medications formerly on the Wyeth program. There is a new application for the Connection to Care program. The Axcan Rx Cost Reduction Program is currently inactive. We will post an update when it is available. The Warner Chilcott PAP has added Enablex Tablets. It has removed Actonel Tablets, Asacol, Asacol HD and Asacol SR Tablets, Dantrium Capsules and Didronel Tablets. It is not accepting new patients at this time for Macrodantin or Macrobid. If a patient is already enrolled then he or she may reapply. Program is open to new patients taking Enablex. Updated application on our site. Pradaxa is now on both the Boehringer Ingelheim CARES Foundation Patient Assistance Program and the Boehringer Ingelheim CARES Foundation Patient Assistance Program for Medicare Beneficiaries. Diplomat Pharmacyʼs Co-Pay Assistance Program has added many medications. Please check our website for the complete list. We have many more PAP application and program updates on our website. Keep checking! For a one-stop place to see PAP updates, join NeedyMeds Forums for free at forums.needymeds.com.
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NEEDYMEDSSTAFF RICHARDSAGALL•MD President richsagall@needymeds.org JAYEVANDUSSEN Vice President jaye@needymeds.org ROBERTADOWNEY•MPA•MED Software Sales Manager roberta@needymeds.org VIKKISLOVITER PAN Editor, Forums Administrator vikki@needymeds.org CHRISSYALEXANDER Office Assistant chrissy@needymeds.org CYNTHIAFOOTE Research Assistant cynthia@needymeds.org ROBINHOFFMAN Research Assistant robin@needymeds.org BILLKYROUZ Research Assistant bkyrouz@needymeds.org AMANDAMUISE Research Assistant amanda@needymeds.org SAMUELRULON-MILLER Research Assistant samuel@needymeds.org CALLUS 978-281-6666
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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.