President Donald Trump took a moment in his State of the Union address to support a federal law to allow terminally ill patients access to experimental drugs that haven’t been fully approved yet by the Food and Drug Administration (FDA).
It was a short shout-out, but significant:
We also believe that patients with terminal conditions should have access to experimental treatments that could potentially save their lives.
People who are terminally ill should not have to go from country to country to seek a cure—I want to give them a chance right here at home. It is time for the Congress to give these wonderful Americans the “right to try.”
Close to 40 states already have laws that allow Americans access to drugs earlier in the testing stage if they’ve got terminal illnesses. But there’s no federal permission, so there are concerns that the FDA and federal enforcement could override state laws.
Congress nearly passed a law last year, but it didn’t make it to the finish line. A new lobbying effort launched earlier in January by groups like Freedom Partners and Americans for Prosperity to try to push it through. According to The Hill, they have an ally in Vice President Mike Pence as well. He signed Indiana’s version of the bill into law back when he was governor.
Eric Boehm wrote about last year’s efforts and some nanny-ish foot-dragging from legislators who for some reason think that earlier access to drugs could somehow make things worse for people who are dying:
“The legislation being proposed could expose critically ill patients to greater harm,” worries Rep. Frank Pallone, D-N.J., minority chairman of the committee. Other Democrats expressed similar worries, even while expressing sympathy for patients who are asking little more than for government to get out of the way during the final days of their lives. There are “very legitimate frustrations with the current system,” for allowing patients access ot non-FDA-approved drugs, admitted Rep. Gene Green, D-Texas. But those problems are not a good reason to remove the FDA from the process, Green said.
Currently, the FDA runs a so-called “expanded access” program for terminally ill patients who cannot get into drug trials for various reasons. According to a Government Accountability Office report published in July, FDA had approved 99 percent of the 5,800 requests made from 2012 through 2015 by patients seeking access to the program.
Lack of access, then, is not the problem, but time is. Patients with terminal illnesses can wait as little as a few hours to as long as 30 days for the FDA to respond to a request to try a new drug, according to the GAO, and that wait could ending any slim hope of finding a successful treatment. If you think dealing with bureaucrats is awful when you’re standing in line at the DMV or applying for a passport, imagine having to go through that same process when your life is on the line.
These terminally ill people should be able to decide for themselves how much they’re willing to risk. Watch below for a look at the “Right to Try” movement from ReasonTV:
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