The National Center for Health Research analyzes and explains the latest research-based information that patients, policy makers, and the public can use to improve their own health and to develop better health programs and policies. The U.S. has the most expensive healthcare in the world, but we don’t live as long as men and women in Europe, Australia, or Canada.
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In The NewsDoes the FDA have a high enough standard for drug approvals? – Is the Food and Drug Administration’s approval process broken? At a HUBweek panel hosted by STAT, experts explored that question in light of the FDA’s decision last week to approve a controversial drug for Duchenne muscular dystrophy, a rare disease. Continue readingFuror Over Drug Prices Puts Patient Advocacy Groups in Bind – New York Times — 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. Continue readingPro&Con: Experience well-suits her to deliver affordable care to all – By Diana Zuckerman, September 23-25, 2016. Published in newspapers across the country, this syndicated column discusses the changes needed to improve the Affordable Care Act. Continue readingF.D.A. Approves Muscular Dystrophy Drug That Patients Lobbied For – The New York Times – 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. Continue readingStatement of Dr Diana Zuckerman, President of the National Center for Health Research – FDA’s Approval of Eteplirsen for Duchenne’s Muscular Dystrophy – The internal documents released by the FDA today show that the FDA scientists in charge of reviewing the drug concluded that it should not be approved. They expressed concern that Dr. Janet Woodcock had decided FDA should approve the drug before she looked at the scientific evidence that the FDA had requested. Those scientists then asked FDA Commissioner Califf to reverse Dr. Woodcock’s decision, but he denied that request. Continue reading
We are in the process of planning an Introductory Patient Training Workshop which will take place on October 14-15, 2016, in Washington, D.C. Please read this flyer for more information about the purpose and details of the Workshop. Preference will be given to applications received by August 15, 2016. The deadline is September 5, 2106. You can apply for the workshop here: http://goo.gl/forms/CxFrg61Qk15pxvyw1
We look forward to seeing you in October!
Sign On To Our Letter To Congress
Congress is working on a law that would lower the standards for new medical products. Congress says it will benefit patients, but to be a “cure” a treatment should actually help patients, not just enrich stockholders.
What You Need To Know
Do you think drug ads are providing helpful information or selling us a fantasy about miracle cures?
See our 2015 survey results about problems with Essure permanent birth control.
Find out about our #LetterstoAnnie project. What killed Annie, a healthy young woman? How can you protect yourself or your daughter? Each week, we will unravel the mystery through letters from Annie’s mom to her daughter: www.letterstoannie.org
If you or a loved one have been harmed by a birth control pill or implant, click here.
Patient advocates from across the country joined us for a day of training to learn more about the FDA process and how patients can have their voices heard.
25 major medical groups recommended which medical tests you DON’T need. Why pay for tests that might even hurt you?
YAZ, Yasmin, Beyaz, and other drospirenone hormonal birth control pills have been found to put women at an increased risk for serious blood clots. Read why. Or read about all your birth control options.