Patients’ Rights

The Upside of Ebola (Yes, There May Actually Be One)

A rising death toll, mass panic, scary mortality rate—what could possibly be good about the out-of-control epidemic? It may accelerate the adoption of laws giving patients more power.

Pascal Guyot/AFP/Getty

Ebola’s arrival and seeming spread in America is causing mass panic, tasteless Internet jokes, and incredibly poorly timed magazine covers. Can anything good come out of the disease, which has no known cure and a terrifying mortality rate of 50 percent?

Yes. To the extent it forces a conversation about the regulations surrounding the development of new drugs and the right of terminal patients to experiment with their own bodies, Ebola in the United States may well accelerate adoption of so-called right-to-try laws. These radical laws allow terminally ill patients access to drugs, devices, and treatments that haven’t yet been fully approved by the Federal Drug Administration and other medical authorities. The patients and their estates agree not to bring legal action against caregivers, pharmaceutical companies, and insurers.

You don’t have to be a doctrinaire libertarian—though it helps—to see the value in letting people with nothing left to lose experiment on themselves. They may get a new lease on life. The rest of us get meaningful information that may speed up the development of the next great medical intervention.

The ineptitude of the official response to Ebola, both here and in Africa, drives home the need the change the ways in which we go about developing new medical interventions. As my Reason colleague Ronald Bailey has written, quick diagnostic tests for Ebola had been developed years ago and promising work was proceeding on a vaccine and other methods of disrupting epidemics, but it all floundered in a regulatory environment that doesn’t move very quickly until it’s too late. Indeed, in August, just as the Ebola epidemic was exploding in Africa, the FDA put a hold on a Canadian company’s treatment program. (The FDA has since reversed the hold.)

Right-to-try laws represent one end run against entrenched, reactionary bureaucratic mind-sets, and the idea is already gaining ground. Earlier this year, legislators in Colorado, Louisiana, and Missouri passed right-to-try laws. A similar bill is sitting on the desk of Michigan Gov. Rick Snyder, having passed through both chambers with near unanimous bipartisan votes. And in November, Arizona residents will get to vote yes or no on Proposition 303: Terminal Patients’ Right to Try Act.

Most right-to-try laws, including the Arizona ballot initiative, aren’t free passes to try anything at all. Typically, patients must be able to show that they’ve exhausted all FDA-approved remedies and the only drugs and procedures that are allowed are ones that have passed initial muster with federal bureaucrats.

Ultimately, there’s no good argument against right-to-try. Opponents typically argue that such laws offer “false hope” and might increase the suffering of patients. But what’s already cruel is the FDA’s drug-testing process. It’s massively expensive and overly long, costing between $800 million and $1 billion to bring a drug to market and taking a decade or more to complete the approval process. There’s every reason to believe that the FDA approval process is killing as many or more people than it saves, especially as the FDA doesn’t allow approvals from Europe and elsewhere to stand in for trials here.

There’s simply no good argument against letting patients who are on death’s doorstep try whatever is available, regardless of what stage a drug has reached in the FDA’s process. As the Goldwater Institute, the libertarian think tank behind Arizona’s Prop. 303, titled its powerful brief in favor of the idea, “Everyone deserves the right to try: Empowering the terminally ill to take control of their treatment.” No one will act cavalierly in such cases, but to the extent that their experiences adds to our knowledge, they will not only potentially be helping themselves but the rest of us, too.

We’re talking about people who have nothing to lose and everything to gain. Indeed, the only real criticism is that such laws still leave too much power in the hands of government and insurance-company bureaucrats rather than patients themselves.

The Michigan law is expected to be signed into law by Gov. Rick Snyder. It’s not immediately clear whether Arizona’s proposition will win in November, but with Ebola in the air, it’s likely that voters will be more inclined to expand their options in end-of-life treatments than stand pat with certain death.

Pretend for a moment that you or a loved one is diagnosed with Ebola and the virus proceeds to a point where death is not simply a possibility but likely. Would you be happy simply to mark time until the inevitable takes hold? Or would you want as many options as possible, even knowing full well most will fail?

If we start having more conversations about the ways in which medical regulations need to change—and need to respect individual patient desires—we might be able to add an upside to Ebola’s arrival in the United States.