Quarterly

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Advocacy Update

The IPPF Meets with the Centers for Medicare and Medicaid Services Marc Yale

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n December 19th, the International Pemphigus and Pemphigoid Foundation (IPPF) and the American Academy of Dermatology Association (AADA) met with Jeet Guram, MD, MBA, who is the Senior Advisor to Seema Verma, the administrator of the Centers for Medicare and Medicaid Services. The purpose of the meeting was to share problems with drug compendia and highlight access to treatment issues related to both Medicare Part B and Part D. According to MJH Life Sciences, “drug compendia are defined as summaries of drug information that are compiled by experts who have reviewed clinical data on drugs. According to the Centers for Medicare and Medicaid Services (CMS), a compendium should include a summary of pharmacological characteristics for each drug/biological that may include dosage and recommended uses.” In attendance at the meeting were Joerg Albrecht, chair of AADA’s Drug Transparency and Access Task

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Quarterly | Winter 2020

Force; Marc Yale, IPPF Executive Director; and AADA staff; as well as representatives from the American Society of Transplantation, American Society of Clinical Oncology, American College of Rheumatology, American Gastroenterological Association, and the American Society for Mohs Surgery. The meeting began with an overview of the problems with the compendia and how they impact access to treatments across multiple specialties. CMS’s reliance on the compendia is restricting the ability of physicians to treat orphan, rare, and even common diseases. These limitations prevent patients from getting medically necessary treatments. We explained how the compendia often deviate from the standard of care for treatment, or worse, how there is simply no treatment listed in the compendia for a disease. In some cases, a physician has to prescribe a more costly or less effective treatment. As a result of this barrier, a subsection of Medicare Part D beneficiaries does not

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