Biotechnology Healthcare - November/December 2008 - (Page 42) Table Characteristics of several copayment foundations Name Founded 2003 2003 2003 1983 2004 1996* 1989 Patients served 24,864 since inception 24,000+ since inception 50,000+ since inception NA 25,000+ since inception 12,000+ since inception Approximately 10,000 in 2007 Dispensed funds ($) 11,000 in 2006 NA 44,000,000 in 2007 9,000,000 in 2006 29,788,253 in 2007 12,235,123 in 2007 17,756,169 in 2006 Caring Voice Coalitiona Chronic Disease Fundb HealthWell Foundationc National Organization for Rare Disorders (NORD)d Patient Access Network (PAN) Foundatione Patient Advocate Foundationf Patient Services Incorporatedg *Patient Advocate Foundation has been a copayment foundation since 2004. NA=not available. Sources: aPamela Harris, written communication March 2008, bChronic Disease Fund 2008, cHealthWell Foundation 2008, dNORD 2006, ePAN Foundation 2008, fPatient Advocate Foundation 2006/2007, gPSI 2006. for-profit organizations. Today, the pharmaceutical industry is the major financier of CFs, leading to what some view as a questionable relationship between the two: The industry serves as philanthropic “do-gooder,” enabling CFs to provide funds to patients for the purchase of pharmaceuticals, while receiving a sizable tax benefit for it. The earliest CF was formed to provide assistance to patients with multiple sclerosis. In 1989, Patient Services Inc. (PSI) initially offered financial assistance to 52 MS patients (PSI 2006). This number has grown exponentially, with nearly 10,000 patients with various diseases served in 2007 (Table). PSI provides assistance with premiums, including COBRA payments, along with copayment assistance, and even pays for medical testing and other expenses not covered by its main programs. Today, several other CFs encompass a broad range of diseases and dispense more funding than ever imagined. Although these organizations share not-for-profit status and provide copayment assistance, they vary in size, disease focus, and other forms of aid. The two largest CFs, as based on the amount of funds dispensed and the number of persons served, are the HealthWell Foundation (HWF) and the Patient Access Network (PAN) Foundation. Since their inception in 2003, these organizations have helped more than 50,000 and 25,000 insured patients, respectively (HWF 2008, PAN 2008). HWF provides aid for people who have one or more of 25 different diseases, including asthma and breast cancer. Assistance to counter the cost of treating the side effects of medical therapies, such as chemotherapy, is included. The PAN Foundation supports 20 different diseases. PATIENT-CENTERED Some of the organizations profiled in this article extend coverage beyond copayment aid to include deductibles, transportation costs, and medical devices not covered by insurance. CFs use a streamlined, patientcentered approach to provide services. In general, patients must provide proof of insurance or of eligibility for insurance, and proof of a need for the medications or ser- vices within the diseases funded by a CF to start the assistance process. Patients may receive funding from more than one foundation simultaneously. When money in a particular fund is depleted, CFs work to find alternative sources. Income also may be factored into eligibility; for example, the National Organization for Rare Disorders (NORD) has a cutoff of 300–500 percent of the federal poverty level (NORD 2006). Such cutoffs differ among and within CFs because of other considerations; for instance, NORD considers the impact of monthly household expenses in addition to medical bills, and the Caring Voice Coalition considers family size, number of children in school, and extenuating circumstances (Harris 2008). Turnaround time from application to aid is fast, simplified by counselors who work with patients on specific needs. The financial support of these charitable organizations rests on their ability to accumulate funding to shield patients with inadequate insurance coverage from exorbitant out-of-pocket medical costs. CFs seek out various sources for dona- 42 BIOTECHNOLOGY HEALTHCARE · NOVEMBER/DECEMBER 2008
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