Tag Archives: patient advocates

Patient and provider groups ask CMS: Don’t turn back the clock on rheumatic disease care

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Writing today in The Hill, Ann Palmer of the Arthritis Foundation and Joan Von Feldt of the American College of Rheumatology have a message for CMS: don’t turn back the clock on rheumatic disease care by proceeding with the recently proposed payment cuts in the Medicare Part B program. They write: The Centers for Medicare & Medicaid Services (CMS) recently proposed additional Medicare Part B payment cuts that would make it exceedingly more difficult for Read More >

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Morning Consult: Medicare’s Flawed Part B Drug Experiment Could Harm Patients

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In today’s Morning Consult, the Community Oncology Alliance’s Rose Gerber has an excellent piece detailing the potential harm to patients posed by the Medicare Part B demonstration proposed by CMS last month: For Medicare patients, the impacts of CMS’s experiment could be dire. Reducing reimbursement to patients’ physicians to the level proposed would make it impossible for many providers to offer the most clinically effective treatment options to patients – forcing patients to forego prescribed Read More >

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Mito What???

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Mitochondrial Disease: The Most Common Disease You’ve Probably Never Heard of… About 20 years ago, mitochondrial disease was virtually unheard of.  Just 10 years ago, it was considered rare. Today, according to NORD, a disease is considered rare when less than 200,000 people are affected.  Mitochondrial disease is not a single disease, but rather an entire umbrella of rare diseases.  For example, Alpers disease and Barth syndrome are very different and rare forms of mitochondrial Read More >

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Industry-Disease Foundation Partnerships Thrive on Communication & Transparency

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Disease foundations are playing an increasingly important role in advancing research and helping to bring new treatments to market. Their unique expertise in specific disease areas, along with their keen understanding of patient needs and access to clinical thought leaders and patients, can enhance and accelerate the clinical development of new treatments. At a 2014 BIO International Convention Breakout Session, session moderator Gail Maderis, President and CEO of BayBio, opened with some key statistics about Read More >

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The International Myeloma Foundation Pioneers Myeloma Awareness Month

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Years ago, after much frustration over the lack of understanding and awareness of multiple myeloma, the International Myeloma Foundation (IMF) declared March as “Myeloma Awareness Month” and has grown its program into a multifaceted campaign. This year’s program included a kickoff live event, free teleconference, new website, social media, local proclamations, and “Myeloma Awareness Month” kits for the more than 150 IMF support groups across the country. At the start of the month, IMF launched Read More >

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