…

“We had a lot of hope that if the right to try was passed it would give an incentive for the drug companies to make available the drugs. But now it doesn’t seem as though the drug companies are giving away their drugs either,” Marilyn Mongiello, Frank’s wife, told STAT. She speaks for him in interviews because he is only able to communicate via technology that turns his eye movements into text. In a brief email exchange, Frank confirmed to STAT that he has not found treatment but that he remains optimistic, despite his worsening condition.

Patients and family members like Frank and Marilyn — a half dozen of whom spoke to STAT — described making dozens of unreturned calls to drug makers, outlining plans to pitch the companies on how right to try could be good for business, and even trolling Food and Drug Administration Twitter accounts hoping to drum up some help getting access. Their failures so far underscore just how many questions remain: Did the law change anything, or did it just give patients false hope? Were the detractors who made such critiques right all along?

“It’s confusing. It’s confusing for even people like me who do this day in and day out,” Alison Bateman-House, a bioethicist at New York University who opposed the federal right-to-try law on the grounds that it would give patients false hope and could potentially lead to patient harm. “So I think there’s probably going to be a little bit of churn as everyone tries to figure out what is happening. But I still maintain my conviction that in the long run this is not going to be a useful way to get patients access.”

…continue reading ‘A Year After Trump Touted ‘Right to Try,’ Patients Still Aren’t Getting Treatment’

Be the first to like.

Like

Unlike