Law Gives Terminally Ill Right to Try Investigational Drugs

This interview was conducted by WSPA and was published on 6/7/16.

South Carolina has a new law, signed by Gov. Nikki Haley last Friday, that allows terminally ill patients to try investigational drugs and treatments that are not available yet. The “Right to Try Act” gives patients who’ve exhausted all other options one last hope.

The Palmetto Promise Institute, a non-profit educational and policy group, helped push for the bill. President and CEO Ellen Weaver says, “These drugs have actually passed the Phase 1 of the FDA safety trials, so really this is just an expansion of a program that already exists called Compassionate Use. The unfortunate problem with Compassionate Use is that it is so bureaucratic and time consuming and expensive that there are only about a thousand patients that are able to complete that process, and we actually have recorded stories of patients who have died while their application was being processed by the FDA. So really this bill is about cutting through red tape to expand a program that’s already in existence and already working but is just limited to too few people right now.”

She says breast cancer is a good example, since there are 22 new drugs in the FDA pipeline that are not available to patients yet, even though many of those same drugs are being used in Europe.

An example of why the law is needed is Mikaela, a young woman who was diagnosed with kidney cancer not long after she got married. Less than five months after she died, the FDA approved a new drug she had been trying to get.

Weaver says about one million people a year in the U.S. get a terminal diagnosis. South Carolina is now the 29th state with a “Right to Try” law.

“I think it could save a life, and one life saved, to me, is worth the trial of this bill,” Weaver says. “And I think in years to come we’re going to hear incredible stories of people who received access to treatment that they would’ve not otherwise had, had it not been for the Right to Try legislation, that means they’re still with us today,” she says.