STAT News, October 7, 2016. One of the nation’s largest health insurers has decided not to cover a controversial Duchenne muscular dystrophy drug because its FDA approval was not based on scientific evidence that it works. This is what NCHR predicted would happen.
Read More »News That Quotes Us & Our Work
We are often quoted in major newspapers and magazines, and on well-respected TV shows, radio programs, and websites where we share our opinion on issues that matter to you and your health. Stay up to date on health news and our take on it by reading the articles in this section.
Obama Extends Controversial Program for Rare Pediatric Drugs
STAT News, September 30, 2016. Friday, President Barack Obama signed into law a bill that will briefly extend a voucher program that rewards drug makers for rare pediatric medicines.
Read More »Furor Over Drug Prices Puts Patient Advocacy Groups in Bind
The New York Times, September 27, 2016. Public anger over the cost of medical products has burned hot for a year, coursing through social media, popping up on the presidential campaign, and erupting in a series of congressional hearings, including one last week over the rising price of the allergy treatment EpiPen.
Read More »FDA Approves Muscular Dystrophy Drug That Patients Lobbied For
The New York Times, September 19, 2016. The Food and Drug Administration approved the first drug to treat patients with the most common childhood form of muscular dystrophy. The agency’s approval went against the recommendation of FDA experts and the agency’s independent Advisory Committee. “The agency has set a dangerous precedent,” said Diana Zuckerman, president of the National Center for Health Research.
Read More »FDA Grants Accelerated Approval for Sarepta Muscular Dystrophy Drug Eteplirsen
Tech Times, September 20, 2016. The U.S. Food and Drug Administration (FDA) has approved the first drug for treating patients with Duchenne muscular dystrophy. “The agency has set a dangerous precedent,” said National Center for Health Research president Diana Zuckerman. “To prove something works, you have to compare it to something else — a placebo or a treatment. They didn’t do that.”
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