Lawmakers Push "Right to Try" Experimental Drugs

It’s kind of like Dallas Buyers Club: A group of sick Texans is seeking to gain access to experimental drugs — only this time, a flurry of state lawmakers is rushing to help them. In Austin, the movement hits a personal chord.

Capitol lobbyist Andrea Sloan waged a public battle with ovarian cancer, seeking federal permission to try an experimental treatment in 2013. She died Jan. 1, 2014.

It’s kind of like Dallas Buyers Club: A group of sick Texans is seeking to gain access to experimental drugs — only this time, a flurry of state lawmakers is rushing to help them.

Eleven of Texas' 31 state senators have put their names on a proposal that would allow terminally ill patients to try investigational drugs that have passed at least the first of three FDA trial phases, once the patient has exhausted other treatment options. There is a similar proposal in the House.

Five states have already passed so-called right-to-try laws, and lawmakers in a dozen other states are likely to consider similar legislation this year.

In Austin, the movement to pass such laws hits a personal chord. Well-known state Capitol lobbyist Andrea Sloan waged a public battle with ovarian cancer, seeking federal permission to try an experimental treatment in 2013, shortly before her death.

“She was left with no options,” said Michelle Wittenburg, a friend of Sloan’s and an advocate for right-to-try laws. “There were no clinical trials available to her.”

But Sloan had to wait more than three weeks to get approval — a process Wittenburg said she could have avoided, had Texas had a right-to-try law on the books.

Notably, the right-to-try bills would not require that drug companies provide the treatment or that insurance plans cover the costs. For that reason, some critics have labeled the statehouse proposals “placebo legislation,” noting that changes to the FDA drug approval process would have to be written in Washington.

But that hasn’t fazed the groups advocating for the right-to-try laws, most notably the libertarian Goldwater Institute, which has helped state lawmakers draft bill language.

“We truly believe this is a state issue,” said Kurt Altman, national policy adviser for the Arizona-based institute. “We believe terminally ill patients should have access to potentially life-saving medication.”

Critics of the laws say they could endanger patients, even if the legislators voting for them do so with good intentions.

“It sets such a low bar for patient safety,” said Dr. David Gorski, a surgeon in Michigan who has written about the right-to-try movement. “In reality, I think these laws are about as anti-patient as it gets.”

State Rep. Terry Canales, D-Edinburg, said he was motivated to file a right-to-try bill, House Bill 438, after learning about Sloan's battle with cancer.

“Hers is one of countless stories of people trying to get access to experimental medication,” said Canales, who wrote the legislation with help from the Goldwater Institute. “It is a federal issue, but I think it will send a message to Congress to do something.”

“Why is government standing in the way of a potential cure?” said state Sen. Paul Bettencourt, R-Houston, who filed a separate right-to-try bill, Senate Bill 694, on Monday.

In fact, the FDA already has a process for helping the terminally ill access unapproved drugs, called the “compassionate use” program. But only about 1,000 patients take advantage of the program each year, according to the Goldwater Institute. 

Both critics and supporters of the right-to-try legislation agree that the Texas bills stand a very good chance of becoming law.

“Voting against these laws is about as palatable to most people as criticizing Mom’s apple pie and the American flag,” Gorski said. “It’s passed everywhere that it’s been introduced.”

This story was produced in partnership with Kaiser Health News, an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.