Tag Archives: patient

Orphan Drug Tax Credit is Crucial to Rare Disease R&D

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The term “rare disease” may be misleading: to be “rare” a disease must effect fewer than 200,000 people in the U.S., but there are over 7,000 rare diseases that have been identified. Taken together, that means that nearly 30 million Americans suffer from a rare disease or condition.  While innovative therapies have been developed for a variety of these diseases—including Sickle Cell Anemia, Gaucher Disease, and Huntington Disease—too many patients still lack treatment options. Developing Read More >

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Wall Street Journal: Patients Deserve Better

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In case you missed it, The Wall Street Journal published my Letter to the Editor this morning.  I make the point that the problem isn’t innovative new treatments from America’s biopharma industry but rather the complex web of health-insurance schemes patients must navigate to access needed medicines. Here is the text of the letter: “Innovative treatments and cures have radically transformed how we treat disease—saving and improving lives and providing tremendous benefits to patients and Read More >

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BIO 2015 Kicks Off: Patient-Focused Drug Development Key Theme of Day One

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The BIO International Convention kicked off in Philadelphia today with a strong emphasis on patient-focused drug development as a seismic shift in the way drugs are developed and delivered. The luncheon keynote featured a discussion with News Anchor and Journalist Tom Brokaw interviewed by BIO’s Jim Greenwood, in which Brokaw shared his experience and perspective as a patient. Brokaw recently authored a book about his experiences as a Multiple Myeloma patient – A Lucky Life Interrupted. Read More >

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United Health To Congress: Let Cancer Patients Eat Gauze (Op-Ed in The Hill)

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Jonathan Wilcox’s op-ed in The Hill today highlights the growing challenge of insurance company tactics that contribute to increased costs to the health care system and restricted patient access to life-saving medicines. While UnitedHealth Group just reported increased revenues for first quarter 2015, patients are shouldering the burden with rising copays and restricted coverage, asserts the author. As Wilcox writes, ‘That’s why cancer advocacy organizations are taking action, pressing Congress and state legislatures to cap co-pays on specialty Read More >

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World Rare Disease Day Celebrates Patient Advocacy and Activism Around The Globe

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Global Genes™ and the identifiable Blue Denim Genes Ribbon™ provides opportunity to show support and help build awareness Global Genes, a leading patient advocacy organization with the mission to eliminate the challenges of rare disease, is inviting industry partners to support the eighth annual World Rare Disease Day. World Rare Disease Day is a day of advocacy to call attention to rare disease in the United States and around the globe. Created by European organization Read More >

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