'Right To Try' Experimental Treatments Carries Big Risk, Ethicists Warn : Shots - Health News Terminally ill patients want easier access to candidate medicines still in the earliest stages of testing. While 33 states have passed laws to enable that, ethicists also warn of big risks.
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Patients Demand The 'Right To Try' Experimental Drugs, But Costs Can Be Steep

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Patients Demand The 'Right To Try' Experimental Drugs, But Costs Can Be Steep

Patients Demand The 'Right To Try' Experimental Drugs, But Costs Can Be Steep

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AUDIE CORNISH, HOST:

States are making it easier for people with terminal diseases to get their hands on experimental drugs and devices. In the last three years, 33 states have passed so-called right-to-try laws. Supporters see them as compassionate. Critics worry about the health and financial risks for patients. Carrie Feibel at member station KQED in San Francisco explains.

CARRIE FEIBEL, BYLINE: California just enacted its own right-to-try law to help dying patients request certain experimental drugs. The drugs have passed a small initial safety trial in humans but have a lot more hurdles before the FDA declares them safe. In state capitols, the bills have attracted politicians from both parties often after emotional hearings attended by dying patients.

Assemblyman Ian Calderon, a Democrat from the LA suburbs, authored the bill. He says if he had just been given a terrible diagnosis, he would want to try anything possible to live.

IAN CALDERON: My thought would be, what do I have to lose? You know, before, I just had to sit and wait and die, but now I have an opportunity to potentially find a cure or at least find something that prolongs my life, find something that could help me.

FEIBEL: Calderon says this law was the logical next step now that California allows physician-assisted suicide.

CALDERON: To me, it's inhumane to have a law on the books that allows you to end your own life but no law on the books that allows you to fight to extend it. I mean that just seems counterintuitive to our basic instincts as people.

FEIBEL: One of the patients who wanted to fight was David Huntley. He was a San Diego State professor who had ALS, also called Lou Gehrig's disease. Before he died, he testified for the bill from his wheelchair. His widow, Lina Clark, says her husband completely understood what was at stake.

LINA CLARK: The patient community is saying, we are smart. We're informed. We feel it is our right to try some of these therapies because we're going to die anyway.

FEIBEL: It's a compelling argument, but there are serious risks according to doctors and medical ethicists. Dr. R. Adams Dudley is with the University of California, San Francisco.

R ADAMS DUDLEY: We know some people try to take advantage of our desperation when we're ill.

FEIBEL: Dudley says the FDA exists for a reason - not just to shut out would-be snake oil salesman but also to ensure the big manufacturers are producing a safe product and not cutting corners.

DUDLEY: If you say there's a path that's not through the FDA, then there are billions of dollars out there to be made by skipping the important steps that we've developed.

FEIBEL: The new state laws are called right-to-try, but all that patients can really do is ask for an experimental drug. Drug companies don't have to give it to them, and insurance companies don't have to pay for it. Dudley says patients could spend huge amounts of money trying a drug that hasn't been proven to work, and the patient may also be giving up their hopes for a controlled, peaceful death at home.

DUDLEY: Instead you try a drug. And you get very severe lung problems, and you end up on a breathing machine in a hospital. That could cost hundreds of thousands of dollars.

FEIBEL: Although these right-to-try laws are now on the books, researchers at New York University haven't yet found a single substantiated case of a patient getting a drug using a state law. That's partially due to the fact that the FDA already has a process to help patients and their doctors apply for experimental drugs. And a new federal research law also may help. The 21st Century Cures Act requires drug companies to be more transparent about how they decide who gets experimental access and how long it will take. For NPR News, I'm Carrie Feibel in San Francisco.

(SOUNDBITE OF THEOPHILUS LONDON AND KANYE WEST SONG, "CAN'T STOP")

CORNISH: This story's part of a reporting partnership with NPR, KQED and Kaiser Health News.

(SOUNDBITE OF THEOPHILUS LONDON AND KANYE WEST SONG, "CAN'T STOP")

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