“We don’t typically expect the government to pay for things until we know they work,” said Holly Fernandez Lynch, a University of Pennsylvania bioethicist. “But the system we have in this country relies on drug companies to develop our drugs, and private companies are not in the business of providing their products for free.”
During the 1980s and 1990s, Gonsalves and other HIV activists were instrumental in pushing drugmakers to provide early access to experimental medications.ALS patients say most companies in their field are tiny startups that can’t afford such costs. Drugmakers have other reasons to deny access, including concerns that unexpected safety problems could hurt their approval chances.
“Unless the drug is a miracle drug, it’s unlikely you would see efficacy in this type of research,” said Dr. Walter Koroshetz, of the National Institute of Neurological Disorders and Stroke. Wallach spent several years working on the legislation with congressional staffers. It passed the House last year by a 423-3 vote, a rare display of bipartisanship that also underscored the group’s political clout.
“We used millions of dollars for our small expanded access program,” said Mary Kay Turner, a company executive. “So we did the maximum we could, but it was just a tiny sliver.” “Historically their only option was to go on the internet and try to buy these supplements or alternative therapies,” said Bedlack, who consults for several drugmakers.
This is one thing I’m on board with the government funding. This illness has been killing people within 2-4 years of diagnosis-it is 100% fatal. It’s about time WE find meaningful treatment. It is not as rare as you think, and it could easily be you or your loved one next ENDALS
Yes, please enlist the world's greatest merchant of death to meddle in healthcare research. Sounds like a splendid plan.
If they're funded by the government, then we should own the medicine if cleared by the FDA, and it should be free for all.
IF NIH funding experimental drug treatment for ALS where were they w ivermectin & hydroxychoroquine during pandemic? So biased! I don't trust the federal government or any of their agencies including the alphabet agencies any longer. Very few in government work 4 the PEOPLE!
Maybe we should just stop being stupid and just give everyone healthcare
Good. ALS s are relatively low and many health insurance companies (Kaiser) don’t even allow patients to enroll in trials at all.
What the hell are the teams of accounts doing for the drug company that they cant offset compassionate drug enrollment....oh wait
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