I appreciate the response by Lisa Kearns and Arthur Caplan to my commentary in the Hastings Center Report on right to try laws. Besides presenting a cogent summary of problems with right to try laws, the response allows me to clarify a point that I tried to make in the commentary.
I said that in focusing on abstract science and policy arguments against right to try laws, experts (and here I meant to include ethics experts) have neglected the power of stories.
Patients’ stories are the currency of right to try advocates. But the stories advocates tell fail to convey the full range of patient experiences with relatively untested drugs. In my view, right to try critics would be more persuasive if they told patients’ stories, too. Legislators and the public should hear stories about the burdens and disappointment that can follow a resort to last-chance drugs. I referred to one such story in my column and describe more of them in a June 2015 Texas Law Review article, “The Right to Try Investigational Drugs: Science and Stories in the Access Debate.”
Twenty-four states in the nation have right to try laws. I congratulate Kearns and Caplan on persuading New York and Connecticut legislators to take a careful look at right to try proposals in their states. Adding patient stories to the discussion could help right to try critics accelerate this trend.
Rebecca Dresser is a professor at Washington University in St. Louis and the author of When Science Offers Salvation: Patient Advocacy and Research Ethics.
Posted by Susan Gilbert at 12/15/2015 01:04:26 PM |
Thank you for your thoughtful reply our right-to-try post of 12/14. We wholeheartedly agree that stories about the negative consequences of accessing unapproved drugs need to come to light. The problem is finding those stories. Neither Art nor I have seen many (they’re so rare that the examples in your Texas Law Review article came as a surprise).
Below is a St. Louis Post-Dispatch article from earlier this year about a man with ALS who moved to Missouri because it had a right-to-try law on the books; he hoped to get an experimental drug — only to be turned down flat by the company. This of course may be a big reason why there are so few negative stories out there, at least in the context of right-to-try laws: nobody’s getting any drugs because of them, so there are no consequences, good or bad, of trying them.
Again, thanks for your helpful response.
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Posted by: Lisa Kearns ( Email ) at 12/15/2015 5:04 PM