There has been a surge of support for right-to-try bills and many states have passed these into law. Congress, eager to do something politically easy and popular, has also jumped on this bandwagon.
Briefly put, the right-to-try laws give terminally ill patients the right to try experimental treatments that have completed Phase 1 testing but have yet to be approved by the FDA. Phase 1 testing involves assessing the immediate toxicity of the treatment. This does not include testing its efficacy or its longer-term safety. Crudely put, passing Phase 1 just means that the treatment does not immediately kill or significantly harm patients.
On the face of it, the right-to-try is something that no sensible person would oppose. After all, the gist of this right is that people who have “nothing to lose” are given the right to try treatments that might help them. The bills that propose to codify the right into law make use of the rhetorical narrative that the right-to-try laws would give desperate patients the freedom to seek medical treatment that might save them and this would be done by getting the FDA and the state out of their way. This is a powerful rhetorical narrative since it appeals to compassion, freedom and a dislike of the government. As such, it is not surprising that few people dare argue against such proposals. However, the matter does deserve proper critical consideration.
One interesting way to look at the matter is to consider an alternative reality in which the narrative of these laws was spun with a different rhetorical charge—negative rather than positive. Imagine, for a moment, if the rhetorical engines had cranked out a tale of how the bills would strip away the protection of the desperate and dying to allow predatory companies to use them as Guinea pigs for their untested treatments. If that narrative had been sold, people would be howling against such proposals rather than lovingly embracing them. Rhetorical narratives, be they positive or negative, are logically inert. As such, they are irrelevant to the merits of the right-to-try proposals. How people feel about the proposals is also logically irrelevant as well. What is wanted is a cool examination of the matter.
On the positive side, the right-to-try does offer people the chance to try treatments that might help them. It is, obviously enough, hard to argue that people do not have a right to take such risks when they are terminally ill. That said, there are still some points that need to be addressed.
One important point is that there is already a well-established mechanism in place to allow patients access to experimental treatments. The FDA already has system of expanded access that apparently approves the overwhelming majority of requests. Somewhat ironically, when people argue for the right-to-try by using examples of people successfully treated by experimental methods, they are showing that the existing system already allows people access to such treatments. This raises the question about why the laws are needed and what it changes.
The main change in such laws tends to be to reduce the role of the FDA in the process. Without such laws, requests to use such experimental methods typically have to go through the FDA (which seems to approve most requests). If the FDA was denying people treatment that might help them, then such laws would seem to be justified. However, the FDA does not seem to be the problem here—they generally do not roadblock the use of experimental methods for people who are terminally ill. This leads to the question of what factors are limiting patient access.
As would be expected, the main limiting factors are those that impact almost all treatment access: costs and availability. While the proposed bills grant the negative right to choose experimental methods, they do not grant the positive right to be provided with those methods. A negative right is a liberty—one is free to act upon it but is not provided with the means to do so. The means must be acquired by the person. A positive right is an entitlement—the person is free to act and is provided with the means of doing so. In general, the right-to-try proposals do little or nothing to ensure that such treatments are provided. For example, public money is not allocated to pay for such treatments. As such, the right-to-try is much like the right-to-healthcare for most people: you are free to get it provided you can get it yourself. Since the FDA generally does not roadblock access to experimental treatments, the bills and laws would seem to do little or nothing new to benefit patients. That said, the general idea of right-to-try seems reasonable—and is already practiced. While few are willing to bring them up in public discussions, there are some negative aspects to the right-to-try. I will turn to some of those now.
One obvious concern is that terminally ill patients do have something to lose. Experimental treatments could kill them significantly earlier than their terminal condition or they could cause suffering that makes their remaining time even worse. As such, it does make sense to have some limit on the freedom to try. After all, it is the job of the FDA and medical professionals to protect patients from such harms—even if the patients want to roll the dice.
This concern can be addressed by appealing to freedom of choice—provided that the patients are able to provide informed consent and have an honest assessment of the treatment. This does create something of a problem: since little is known about the treatment, the patient cannot be well informed about the risks and benefits. But, as I have argued in many other posts, I accept that people have a right to make such choices, even if these choices are self-damaging. I apply this principle consistently, so I accept that it grants the right-to-try, the right to same-sex marriage, the right to eat poorly, the right to use drugs, and so on.
The usual counters to such arguments from freedom involve arguments about how people must be protected from themselves, arguments that such freedoms are “just wrong” or arguments about how such freedoms harm others. The idea is that moral or practical considerations override the freedom of the individual. This is a reasonable counter and a strong case can be made against allowing people the right to engage in a freedom that could harm or kill them. However, my position on such freedoms requires me to accept that a person has the right-to-try, even if it is a bad idea. That said, others have an equally valid right to try to convince them otherwise and the FDA and medical professionals have an obligation to protect people, even from themselves.