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Right To Try

July 26, 2017

I haven’t posted on this blog for quite some time, having gotten distracted by the tempting and ultimately false hope of a do-over.  Despite my best efforts over the last few months two things have become clear.  One, I’m probably never going to play for the New York Philharmonic.  Two, last November isn’t coming back with a different result.  In my fog of violinistic pipe dreams and pink fluffy visions of impeachment I have held on to the belief that I have a Right To Try.

Imagine my amazement when I read that my Right to Try is now enshrined in rule of law in most states.  Not the Right to Try to have a music career.  Any delusional individual has that right.  No, I’m informed that I have the Right to Try…not to die!  Well, thanks, but if you think this means I’m going to renew that gym membership I’ve got a potential music career to sell you.

Actually, many states have passed Right to Try laws that concern end-of-life treatment options.  These laws are meant make it possible for terminally ill patients to get access to experimental or unconventional treatments that are not yet generally available, ie., that haven’t been approved by the FDA.  There’s even a website, righttotry.org, created by the Goldwater Institute, a conservative think tank.  Here’s what these folks say about the Right to Try concept:

Under Right To Try, a terminal patient would be able to access an investigational medicine if:

  1. The patient has a terminal disease and has exhausted all conventional treatment options
  2.  The medication has successfully completed basic safety testing and is part of the FDA’s on-going approval process
  3.  The patient has provided “informed consent” acknowledging the potential risk of the drug
  4.  The company developing the medication is willing to make it available to the patient

I am not opposed to people getting access to potentially helpful treatments.  I’m all for it.  There is some room for caution, however, when I consider a few facts about science, the FDA, and human nature.

First, science.  It is no secret that science has a mixed track record when it comes to medicine.  Science is the reason people don’t die of smallpox anymore, and the reason the maternal death rate is so low, and the reason we sterilize surgical instruments.  But there have been some spectacular fails as well.  Consider the anti-nausea medication Thalidomide.  The recent discovery that many of the stock breast cancer cells used for breast cancer research are not, in fact, breast cancer cells (read Rigor Mortis: How Sloppy Science Creates Worthless Cures, Crushes Hope, and Wastes Billions, by Richard Harris).  Or the striking discovery that real arthroscopic knee surgery is not any more useful than fake arthroscopic knee surgery (N Engl J Med 2013; 369:2515-2524December 26, 2013).

Second, the FDA.  Basic safety measurements are small pre-clinical trials done in the lab and on laboratory animals, not people.  Furthermore, some sources suggest that 90% of experimental medicines and treatments fail to pass FDA approval because they ultimately don’t work.

The irony here, of course, being that while no one believes in science any more, everyone still believes in science.  For now we come to the human nature factor.  A meta-analysis of studies of patient expectations, done by Tammy Hoffman and her team and published in the Journal of the American Medical Association Internal Medicine, showed that “…the majority of participants overestimated intervention benefit and underestimated harm.” (JAMA Intern Med. 2015;175(2):274-286.)  This despite the fact that nothing can be done for or to a patient without informed consent, and we can talk another time about how useful informed consent is, both informationally and legally.  Here’s what Daniel Engber of Slate magazine, who reports on this sort of thing, says about this:

Patients seem to overvalue innovation, as a rule, and assume that newer drugs have a better chance of working than any other treatment, just because they’re new. Not only does this sanguine view of scientific progress fail to fit the facts; it also leads patients to the converse, false impression that “nonconventional” treatments aren’t likely to be harmful in themselves. A more sober view suggests that the hope that often moves people to seek out these types of treatments—and the ever-present pressure to fight until the end—is not as useful as we think.

Despite all of the above, people have a seemingly endless capacity for hope.  It is part of what makes us human and allows us to get up every morning, practice, write, raise our children, develop new drugs, and vote.  We all have the Right to Try.
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One Comment
  1. Wonderful piece, thanks for writing!

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