Soapbox

‘Right to try’ bill offers false hope to the desperately ill

A bill on Gov. Jerry Brown’s desk deals with access to experimental drugs.
A bill on Gov. Jerry Brown’s desk deals with access to experimental drugs. Bigstock

Last October, Gov. Jerry Brown vetoed a “right to try” bill, yet legislators sent a similar bill to his desk this session. While this legislation promises to help dying patients gain access to drugs that haven’t been approved by the FDA, it would do nothing for them. In fact, right-to-try laws may actually harm patients.

The Medical Oncology Association of Southern California and the California Nurses Association oppose Assembly Bill 1668, by Ian Calderon, D-Whittier. We agree that it is in the best interest of terminally ill Californians and their loved ones that the governor veto this bill again.

The misleadingly named bill would not give patients a real right to try experimental drugs. Rather, it would give them a “right” to request access to drugs in development at pharmaceutical companies. But there is no obligation for a company to grant a patient’s request. Thus, these right-to-try laws are cruel, offering false hope to the most vulnerable patients.

Furthermore, the bill is not needed. All patients already have the right to request access to experimental drugs via a U.S. Food and Drug Administration policy known as expanded access.

And the bill is likely unconstitutional. It claims for California a right to oversee the use of experimental drugs that has resided with the federal government for 50 years. When a right-to-try law is challenged in court, it will likely be struck down. Reputable drug companies would not use it to provide drugs to patients.

The legislation is unethical for other reasons. The bill states that patients trying experimental drugs risk losing insurance coverage for hospice and home health care. Experimental drugs are not miracle pills and thus would not alleviate the need for appropriate care and assistance.

The bill also wrongly presumes that drugs that have completed the first phase of testing are relatively safe. In Phase 1 testing, an experimental drug is given to a small number of volunteers to determine a maximum safe dosage. Most Phase 1 testing is done on healthy people, while giving an experimental drug to people who are quite ill may kill them. A drug of questionable safety and unknown efficacy may result in a quicker or more painful death.

It’s important to keep in mind that FDA oversight of experimental drugs is crucial for public safety. It can prevent unscrupulous companies or doctors from preying on patients desperate to try any new medicine.

Yet the most important reason to keep this inhumane bill from becoming law is the fact that since the first such bill became law in 2014, there has not been a single confirmed case of a patient using it to get an experimental drug.

For all these reasons, we urge Gov. Brown to once again say no to what amounts to nothing more than empty, unethical, feel-good legislation.

Alison Bateman-House is a member of the division of medical ethics at the New York University School of Medicine and can be contacted at alison.bateman-house@nyumc.org. Arthur Caplan is the head of the division of medical ethics and can be contacted at arthur.caplan@nyumc.org. Lisa Kearns is a research associate at the division of medical ethics and can be contacted at lisa.kearns@nyumc.org.

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