If you or a loved one were dying of a terminal illness and your doctor told you there were no proven treatments, would you take the risk of trying an experimental, unproven drug?
Many patients would say yes. But as with most medical decisions, the more you know, the more you realize the answer is not so simple.
As has been clearly shown, Congress is not very good at making complicated and nuanced decisions about medical care.
That’s reason enough to question the new federal Right to Try Act dozens of senators and representatives are pushing this spring.
The most important thing to know is that all terminally ill patients already have a right to try experimental drugs in this country.
The proposed new law, however, is much more dangerous to all patients, and not just those facing fatal illness. Here’s why:
The current national expanded access program enables doctors to request experimental drugs for their patients. If the company that makes the treatment agrees, the patient will get the treatment for free or at cost; companies are not allowed to sell experimental drugs for a profit.
Many patients get access to experimental drugs through this existing program, and improvements are underway to further streamline the process.
In contrast, under the proposed new law, a drug company could charge desperate patients as much as they want to get access to an experimental drug.
Since insurance companies do not pay for experimental treatments, many patients would wind up with the right, but not the money, to try such regimens. Out of desperation, some would surely go into debilitating debt to try a drug that might harm rather than help them.
The current national program makes sure patients understand the risks of taking an experimental treatment and requires that the drug has been studied enough to know that the patient might possibly benefit from it.
Under the proposed new law, drugs that were only studied at a low dose on a small number of healthy volunteers could be sold to patients, and unethical doctors could receive kickbacks for persuading patients to try treatments that will not help them.
It’s easy to understand why every patient wants to have hope of a cure, and that’s the power of right-to-try laws.
So far, hype and false hope have convinced 33 states to pass right-to-try laws that provide no real advantage over the current national program. But rather than learning from the mistakes at the state level, patient activists and others are pushing Congress to pass a much more dangerous federal law.
In addition to encouraging the sale of unproven treatments at sky-high prices to desperate patients, the 2017 federal Right to Try Act would do the following:
—Allow the sale of almost all experimental drugs, even those never tested on patients before.
—Prevent patients and family members from suing the company if the treatment harms or even kills them.
—Prohibit doctors and scientists from evaluating the benefit or harm of the experimental drugs.
Desperate patients are lobbying for the bill, but do they realize what they are lobbying for?
Instead of getting access to free experimental drugs that have some evidence of benefit and are being tested to help all patients, this law would allow naive and desperate patients to be exploited by greedy companies and unethical doctors.
The right-to-try movement opposes the FDA for what’s described as “interfering” with the doctor-patient relationship. They do not understand that unbiased scientific evidence is needed to help physicians and patients make informed decisions — whether to save a life or make a patient’s last months as enjoyable as possible.
Patients already have a right to try through the FDA’s humanitarian expanded access program, which gives them hope while protecting them from greedy exploitation. The proposed federal Right to Try Act would not.
Diana Zuckerman is president of the National Center for Health Research, a nonprofit, nonpartisan research and advocacy organization that promotes health and safety for adults and children. Readers may write her at NCHR, 1001 Connecticut Ave., Suite 1100, Washington, D.C., 20036.