If you’re so sick that you have nothing to lose and you’re looking the Grim Reaper in the face, why shouldn’t you be able to try experimental and officially unapproved treatments? While libertarians recognize individuals’ right to take their own risks, even those of a more nanny-ish disposition have a hard time coming up with answers to that question. That’s why the Right to Try movement has taken off across the country, marking its latest victory in Texas.
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“In a major win for rare disease patients, Texas Governor Greg Abbott signed Goldwater’s Right to Try for Individualized Treatments Act,” Brian Norman of the Goldwater Institute, which champions right-to-try legislation, wrote last week. “Championed by Senator Paul Bettencourt and Representative Ken King, SB 984 expands Goldwater’s original Right to Try law to potentially lifesaving treatments that are designed specifically for individual patients.”
Right-to-try laws have been passed in at least 41 states, largely based on model legislation crafted by the Goldwater Institute that allows those with terminal illnesses access to experimental treatments. Colorado was the first to adopt right-to-try, though Texas wasn’t far behind, passing such a law in 2015.
Counterpart federal legislation passed in 2018. At the time, President Donald Trump, then in his first term, commented, “With the Right to Try law I’m signing today, patients with life-threatening illnesses will finally have access to experimental treatments that could improve or even cure their conditions.”
In 2023, the Lone Star State expanded right-to-try to patients with chronic ailments. That law specified that “it is the intent of the legislature to allow patients with a severe chronic disease to use potentially life-altering investigational drugs, biological products, and devices.”
By that time, some states, including Arizona, had already passed laws expanding right-to-try to include individualized treatments that hadn’t been contemplated in the original legislation—or even by most physicians, not long in the past.
“Rapid medical innovations have made it possible to take an individual’s genetic information and create a treatment for that individual person,” notes the Goldwater-sponsored Right to Try website. “More patients, especially those with rare and ultra-rare illnesses, will pursue these treatments when they have exhausted other options. Unfortunately, the [U.S. Food and Drug Administration]’s current regulatory scheme is not designed to handle these kinds of individual treatments, and that will keep life-saving medication out of the hands of patients unless reforms are adopted.”
Just days ago, Cincinnati’s WKRC marked National Cancer Survivor’s Month by highlighting patients who benefited from radiation and chemotherapy treatments that were tailored to their bodies.
“Precision medicine is finding mutations or proteins in an individual’s body that suggests that certain drugs can be used to treat that patient not only most effectively but with the least side effects,” Michael Gieske, director of the Lung Cancer Screening Program at St. Elizabeth Healthcare, told WKRC.
In Texas, legislation to clear the way for patients to try such treatments before they’ve been formally approved came in the form of SB 984, which “establishes a pathway by which patients with rare or ultra-rare diseases may seek, under their doctor’s care, personalized treatments developed in federally approved facilities.”
The bill’s sponsor in the Texas Senate, Sen. Paul Bettencourt (R–Houston), boasted, “Texas is again leading the nation in fighting for the most vulnerable patients, whose only hope lies in cutting-edge, individualized treatments not traditional clinical trials, and for me, the coolest thing you can do as a legislator is pass a bill that saves lives.”
None of these laws can guarantee that an experimental treatment will actually improve a terminal or chronic patient’s condition, of course. But there’s no good reason for blocking access to promising or even long-shot treatments when patients have run out of other options.
Through the various incarnations of proposed legislation, the Right to Try movement has sought to expand patients’ choices and reduce bureaucratic barriers to treatment. But it’s not perfect. Right-to-try laws create exceptions to red tape that stands between patients and potentially life-saving treatments, but they don’t fully empower people to make their own decisions, nor do they eliminate the bureaucratic hurdles that slow the approval of medicines and medical devices.
“Drug lag costs lives because people suffer and die from disease that might be treatable, if only there were more investment in finding a cure,” argued Jessica Flanigan, an associate professor at the University of Richmond, in her 2017 book, Pharmaceutical Freedom: Why Patients Have a Right to Self-Medicate. “Requirements that raise the cost of development make it less likely that they will succeed. Premarket testing conditions also cost lives because patients with conditions that could be treated or cured by unapproved drugs suffer and die while they are waiting for approval.”
Flanigan recommends a fully libertarian approach that would remove the restraints from people’s freedom to try medications and medical treatments based on their own judgment and the advice of whatever sources and experts they choose to consult. It’s a morally good and consistent take that would eliminate the barriers to medicines and medical devices while also lowering the costs of developing new ones. People would be expected to shoulder the burdens of any risks they take.
But liberating though Flanigan’s approach would be, it’s far more difficult to get through legislatures than are a series of incremental right-to-try laws that erode bureaucratic hurdles a little at a time.
Montana took the next step last month when Republican Gov. Greg Gianforte signed a bill allowing for centers where patients can receive experimental treatments that have completed phase 1 clinical trials but not yet been approved. Everybody is eligible, subject to recommendations from physicians and the requirements of informed consent. To escape federal regulation, experimental meds administered in the centers will have to be produced in Montana—but the state has an active pharmaceutical sector.
Texas took an important step last week toward expanding the right to try experimental medical treatments to a broader sector of the population. But the Right to Try movement isn’t nearly done.
