A lot of people are cheering the new “right to try” law enacted recently, that permits terminally ill people access to experimental drugs not yet approved by the FDA.
I get it. All in all, it is probably a good law to have passed, but I am not an enthusiast.
First, these drugs might only have passed Phase 1 testing — which involves few people who may not be sick — and only involves early safety testing, not efficacy. These drugs might not work, and could cause serious side effects to people who are desperately ill.
Second, just because it would be legal for people to try these drugs, that doesn’t mean they will be able to obtain them.
For example, there is the cost, which the law does not cover. Health insurance doesn’t pay for experimental treatments either. It is true that drug companies offer test subjects free medication. But those are during controlled experiments. If people wish to take the drugs outside of those limited tests, there is no guarantee they will be able to receive free or low cost — nor that there will be availability of the drug, which will not yet be in mass production.
That raises the prospect of exploitation. Fraudsters could pretend to have the drugs — as has happened in the stem-cell field. Or, desperate people may be only able to get drugs at high cost. These drugs will not be cheap at the experimental stage.
Then, there is the potential for increased suffering caused by these mostly untested products. Drugs often come with serious side effects — sometimes, an earlier death. Part of the purpose of using human subjects in later testing is to learn whether they are efficacious and assess the side effects on the ill beyond what was learned in Phase 1 and animal testing.
If something goes wrong, who pays for the necessary treatments that will follow? Test subjects receive free interventions if side effects pop up. Those in “right to try” might not. I wonder whether health insurance will pay for such treatments, given that it won’t pay for the drugs.
Finally, “right to try” could dissuade eligible people from entering hospice, thereby missing out on the tremendous benefits that program offers the dying and their families. It is a hospice cliché for patients to say they wouldn’t have missed that time for anything. I heard that myself from more than one patient when I was a hospice volunteer.
Too often, people enter hospice too late to receive these benefits — sometimes a day or two before passing. It would be a shame if the “right to try” law dissuaded people from receiving a true “death with dignity,” in the desperate hope that the Hail Mary experimental drug could save or extend their lives.
I understand that people need hope. Hospice offers it. So does the “right to try.” In most cases, I believe the former hope will be the more genuine and the latter will come at a potentially significant personal cost.