Briefly put, 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. Roughly put, passing Phase 1 just means that the treatment does not immediately kill or significantly harm patients.

On the face of it, no sensible person would oppose the right-to-try.  This right is that people who have “nothing to lose” are given the right to try treatments that might help them. The bills and laws use 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 the way. This is powerful rhetoric that appeals to compassion, freedom and a dislike of the government. As such, it is not surprising that few people dare oppose the right-to-try. However, the matter does deserve proper critical consideration.

One way to look at it is to consider an alternative reality in which the narrative is spun with a different rhetorical charge, a negative spin 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 probably be opposed to such laws. But rhetorical narratives, positive or negative, are logically inert and are irrelevant to the merits of the right-to-try. How people feel about the proposals is also logically irrelevant as well. What is needed 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 hard to argue that terminally ill people do not have a right to take such risks. That said, there are still some concerns.

One concern is that there is an established mechanism allowing patients access to experimental treatments. The FDA already has as system that approves most 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 such access. This raises the question about why the laws are needed and what they change.

The main change is usually to reduce the role of the FDA. Without such laws, requests to use experimental methods must go through the FDA (which seems to approve most requests).  If the FDA routinely denied treatments, then such laws would seem needed. However, the FDA does not seem to be the problem as they generally do not roadblock the use of experimental methods for the terminally ill. This leads to the question of is limiting patient access.

The main limiting factors are those that impact almost all treatment access: costs and availability. While the right-to-try grants 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, and 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, and the person is free to act and is provided with the means of doing so. In general, the right-to-try does little or nothing to ensure that treatments are provided. For example, public money is usually not allocated to pay for them. As such, the right-to-try is like the right-to-healthcare: you are free to get it if you can pay for it. Since the FDA 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 earlier or they could cause suffering. As such, it does make sense to have limits on the freedom to try. At least for now 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 patients can provide informed consent. This does create a problem: as little is known about the treatment, the patient cannot be well informed about the risks and benefits. But, as I have argued often elsewhere, 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 get married, 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 can be 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.