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The ethics of ‘Right-to-try’ in California – exploitation or hope?




pills money medicine
pills money medicine
Photo by Chris Potter via Flickr Creative Commons

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In 2017, California became one of 33 U.S. states to adopt a popular yet highly contested ‘right-to-try’ law.

Right-to-try was created to allow terminally ill patients to try to access experimental therapies that haven’t been fully approved by the FDA. With the backing of two physicians, a terminal patient in California can ask a company for a drug or device that has completed only the first phase of the FDA’s testing.

The FDA already has an expanded access program that gives patients access to experimental drugs, though critics say the process is too lengthy and cumbersome. Proponents of right-to-try see it as a matter of civil liberty, a personal decision to be made by a dying patient seeking a modicum of hope, for themselves, or barring that, for posterity, who might learn from their experience.

But various bioethicists and the former FDA commissioner have opposed the legislation. Criticisms of right-to-try are that it could cause patients to lose access to health insurance or hospice, could allow companies to exploit patients, could expose patients to drugs that worsen their already deteriorated condition and that the law unfairly demonizes the FDA when pharma companies are the real problem.

Meanwhile, right-to-try is gaining popularity. Mike Pence, who signed a right-to-try bill in Indiana in 2015, has said he would support a federal version of the legislation, and Trump has also signaled support. Host Larry Mantle talks to two patient advocates about their opposing views on right-to-try, and the ethics and realities behind the legislation.

Do you have personal experience with right-to-try or the FDA’s expanded access program? Does right-to-try provide hope or does it allow for the exploitation of vulnerable people?

Guests:

Lina Clark, co-founder and board member of Hope Now for ALS, which works with government and industry to find a cure for Amyotrophic lateral sclerosis (ALS)

Andrew McFadyen, executive director of the Isaac Foundation, which supports and advocates for patients and families with Mucopolysaccharidoses (MPS) diseases