President Trump on Wednesday signed into law a bill giving terminally ill patients the “right to try” treatments that have not been fully approved by the FDA.
“Thousands of terminally ill Americans will finally have hope, and the fighting chance, and I think it’s going to be better than a chance, that they will be cured, they will be helped, and be able to be with their families for a long time, or maybe just for a longer time,” said Trump.
Among the terminally ill patients to attend the signing ceremony was Jordan McLinn, an 8-year-old boy from Indiana who suffers from a degenerative genetic disease known as Duchenne Muscular Dystrophy. While recent advances have extended the life expectancy for DMD patients from the teen years into the early 30’s, it is likely Jordan will be wheelchair-bound by his 12th birthday.
Experimental medications allowed by the Right to Try Act will give hope to people, like Jordan, who have no other option. Specifically, the law gives terminally ill patients access to drugs that have passed “Phase 1” of the FDA’s approval process. The complete approval process currently takes between 3 and 10 years.
“Right to try” legislation has long been a priority for Trump, GOP lawmakers, and Vice President Mike Pence – who signed a nearly identical law as Governor of Indiana in 2015. In his remarks at the signing ceremony, Trump referred to the bill as “another promise to the American people” and thanked lawmakers Ron Johnson (R-WI), Joe Donnelly (D-IN), Brian Fitzpatrick (R-PA), and Michael Burgess (R-TX) for helping push the bill through Congress.
“America has always been a nation of fighters who never gave up, said Trump. “This is very personal for me, as I proudly sign this bill, thousands of terminals ill Americans will have the help, the hope, and the fighting chance that they will be cured.”
Lawmakers’ attempts to pass “right to try” legislation in past years have been stymied by opponents who worry the new rule will create false hope, allow quack doctors to profit, interfere with FDA safeguards, and cause harm to patients.
“FDA oversight of access to experimental treatments exists for a reason – it protects patients from potential snake oil salesmen or from experimental treatments that might do more harm than good,” argues Rep. Frank Pallone Jr. (D-NJ).
The way I see it, if any medication changes my prognosis from “will die” to “might die,” sign me up.
Editor’s note: While this is certainly a dangerous proposition for vulnerable patients, every person has the right to try to stay alive in the face of certain death.