Tag Archives: patients

Mito What???

Liz-Kennerly-115x76

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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BioCentury TV This Week: 340B Drug Discount Program Needs More Oversight

Todd

BIO’s Laurel Todd shared concerns that the 340B program has departed significantly from its original intent, leading to evidence of abuse and potentially harmful consequences for patients. “The original intent of 340B was to support the most vulnerable patients; clearly that is not the focus for many of the participants in the program now,” said Todd. Todd pointed to three primary reasons the program needs more oversight: Exponential growth, significant violations revealed in audits, and Read More >

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AIR 340B: New Analysis Shows Most 340B Hospitals Provide Little Charity Care

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Today, the Alliance for Integrity and Reform of 340B (AIR 340B) released a new report, showing that a substantial portion of hospitals enrolled in the 340B drug discount program provide only the barest amount of charity care, and as such they are not fulfilling Congress’ expectations about the program. Congress created the program in 1992 to help uninsured indigent patients gain better access to prescription medicines. The original intention of the program was to provide Read More >

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Rare Disease Day 2014: Joining Together for Better Care

Hans Schikan of Prosensa

There are more than 6,000 different rare diseases affecting over 60 million people across Europe and North America, alone, and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone. As the world marks Rare Disease Day on February Read More >

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FDA Week: For Biologics, A Name Isn’t Just A Name (Jim Greenwood op-ed)

Jim Greenwood

What is in a name? Names help make medicinal products more easily distinguishable by doctors, pharmacists and patients. When you are talking about biologics, complex medicines that are manufactured using living organisms, and biosimilars, medicines that are similar to, but not the same as, innovator biologics, naming is a significant consideration. As a pathway for biosimilars approval is implemented, a clear priority should be to craft a naming convention that both contributes to patient safety Read More >

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