Recently, the US Congress voted on a set of laws colloquially known as the “right to try laws.” Put most simply, these laws would allow terminally ill patients to participate in trials for drugs and cures that have not yet been cleared by the FDA for general consumption. Those dying would, under the news legislation, gain access to lots of untested novel medical therapies, from pharmaceutical concoctions to non-western treatments.
Now, most people would think this is a great law to pass. For people dying of incurable diseases, this law would allow them some glimmer of hope as they lay dying. In addition, proponents of the law imagine bestowing some dignity in dying by allowing patients to produce some data about the efficacy of the drug for the next sufferer of the disease. The presidential administration is hugely in favor of this law and it’s received a lot of support across the aisle.
The issue with the law, though, is that it’s much less about dignity for the dying and more about undermining the power of the FDA. Throughout his presidential campaign, Donald Trump railed against the power of unelected agencies that wield power with little oversight and no input from voters. That is, agencies like the EPA, the FDA, and more are able to impose laws and govern the US populace without having to win elections or convince voters of the benefits of their intended plan of action.
These agencies really got the bulk of their power in 1984 during a SCOTUS case called Chevron U.S.A., Inc. v. Natural Resources Defense Council, Inc. The unanimous decision held that, in certain cases, Congress had to defer to the research and decision of a government agency. In the example of this case, Congress passed a law that had to do with air pollution, but its recommendation for how much pollution was too much conflicted with that of the EPA, who had done extensive digging into environmental implications and human safety. Today, “Chevron Deference” describes the power agencies have to determine specifics within their expertise. In a hypothetical, imagine Congress passes a law about how much mercury is allowed to go into streams. Congress can pass an act capping the mercury that can enter water, but it’s up to the EPA to decide how much is too much based on research into ecology and health.
Naturally, though, this has led to some friction between the agencies and the elected officials. While ostensibly these agencies function in a non-partisan and wholly scientific capacity, politics has managed to seep in, and the agencies go relatively unchecked in their scientific methods and findings. Whereas some are happy to allow the experts in their respective fields to hold power, others have voiced concern about who they answer to and how to ensure that they’re producing the best and most unbiased information.
All this brings us back to the “right to try” laws. Critics of the law as it’s written are concerned about the precedent it will set about untested medications and the slow, steady erosion of the FDA’s power to restrict unsafe substances from the market. If the real end goal here is truly to help the dying and provide a broader base of willing participants in drug trials, critics argue that better coordination with drug companies is the answer, not chipping away at the FDA.