Right to Try

Trump Promotes 'Right to Try' Experimental Treatments for Terminally Ill Patients in SOTU Address

A bill in Congress would follow the states and allow greater access.


IV Tube
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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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  1. Sounds good to me!

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  2. But it might kill them..

  3. Good! I've always thought this was one of the most ridiculous things ever. They're already dying, WTF possible harm can come from a last ditch effort to NOT die??? Fucking nanny state dildos.

    1. Well, if they live due to getting the right drugs, they might be predisposed to using drugs, so it's better they die, because DRUGS!

    2. The arguement about further harm centers around the provisions that exempt insurance companies from having to pay for the drug or any complications (such as hospitalization and/or treatment of side effects). So there is potentially significant financial cost.
      Also, taking experimental treatments disqualifies the patient from hospice care.
      And what you get for these costs is largely false hope since less than 2% of drugs that have passed phase 1 testing end up getting approved, and that is assuming the experimental drug will treat what is killing the patient (a big "if").
      Another bad provision is specifically prohibiting any mention or consideration of these patients' outcomes or experiences when/if considering drug approval. This is seen as protecting the drug producers from the fallout of a scheme to fleece desperate people who would be better served spending their remaining time with friends and family.

      1. Since no one else is required to pay, presumably the patient pays out of pocket. But we can't let dying people decide how to spend their own fucking money. And of course we can't have people deciding to take a chance on being "fleeced" because you know how they should spend their remaining time. Fuck off slaver.

        1. So unless you are rich enough to afford the drugs you have no rights to live longer?

          Will the insurance be required to pay for any side effects of the drugs or will all future medical expenses have to be paid for by insurance or the government?

        2. Easy there GG Sparky McSparkface, I did not say I agreed with the arguements against "Right to Try".
          I was answering vek's question about "...[what] possible harm.." and anyone who thinks such concerns are purely theoretical should spend some time reading about Stanislaw Burzynski and his antineoplastons.

          Even though you did not ask, personally, I am completely against denying access to an exsisting treatment, when there is reason to think the treatment could result in additional quality years. But treatments that have only gotten past phase 1 (which only looks for major life threatening effects in a few healthy volunteers) sets a bar that is entirely too low. For example the sedative Drug fospropofol cleared phase 1 trials and subsequently had to be abandoned during phase 2 trials which uncovered the not infrequent side effect of intense perineal burning that was resistant to all pain medications and treatments. The bill currently being considered would have made fospropofol available pre-phase 2 and prevented anyone from disseminating the information on side effects to others considering using it.

          I agree with allowing access to experimental drugs and treatments but the current bill is not the way to do it.

  4. I'm fine with letting people try but the problem is if a person is dying and then dies during treatment you won't really know if the treatment caused the death or was of any effect for not being timely etc it becomes hard to analyze except in cases where the person lives

    1. The "tries" don't replace the actual studies that are ongoing. They are outside the studies and may save lots of lives.

      This shouldn't affect the studies at all.

  5. The dimocrats have turned into a bunch of Victorian prudes...

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