Boston Globe, May 22, 2023: Boston Globe quotes NCHR and other experts explaining why we are concerned that Sarepta’s gene therapy for Duchenne Muscular Dystrophy isn’t proven to work and has substantial risks. If it doesn’t work, patients who use it will not be able to try other, potentially better gene therapies in the future.
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.
FDA advisers recommend accelerated approval of a Sarepta gene therapy
Boston Globe, May 12, 2023: FDA advisers recommended accelerated approval of Sarepta gene therapy for Duchenne Muscular Dystrophy, despite questionable results and worrisome risks. We testified that lowering FDA standards harms all families, and that Duchenne patients deserve free access to affordable treatments until drugs are proven to work.
Read More »Alzheimer’s drug donanemab: what promising trial means for treatments
Nature, May 4, 2023: Nature news article quotes Eli Lilly’s press release claiming donanemab delays cognitive decline from Alzheimer’s Disease, but we ask if the small benefit is meaningful to patients with mild cognitive impairment compared to the risk of death or brain swelling or bleeding.
Read More »FDA’s new plan to study opioids’ effectiveness faces resistance
STAT, April 19, 2023: An FDA proposal to study whether opioids are effective as a chronic pain treatment is facing major resistance from addiction and pain care experts who are not paid by industry. We told STAT that the proposed clinical trial is unethical because it will provide no new information and would make some patients more dependent on opioids.
Read More »For Canadian Patients, Therapeutic Psychedelics Beset by Red Tape
Undark, March 8, 2023: Undark article reviews the red tape in Canada vs. U.S. for access to psychedelics for cancer patients and other depressed patients. In this news article, we explain FDA expanded access program, which tends to make access easier if companies agree to help patients.
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