In 2014, so-called “Right to Try” laws, which gave terminally ill patients access to investigational medications, were enacted in five states. More state legislatures are now considering such laws.
While time will tell whether these investigational drugs have any significant impact on quality of life or longevity, the legislative debate over Right to Try laws must be more informed than it has been, argues an expert in biomedical ethics and law at Washington University in St. Louis.
“The campaign for Right to Try laws is the latest move in an ongoing effort to give seriously ill patients access to drugs whose safety and effectiveness remain largely unknown,” said Rebecca Dresser, JD, the Daniel Noyes Kirby Professor of Law and professor of ethics in medicine. She has written extensively on end-of-life care.
“Although scientists and policymakers oppose the Right to Try approach, it has proven quite popular among state legislators and the public,” Dresser said. “Going forward, however, the legislative debate over Right to Try laws should be more informed than it has been.”
Dresser laid out her thoughts in an essay, “The ‘Right to Try’ Investigational Drugs: Science and Stories in the Access Debate,” published in the Texas Law Review.
“To achieve this end, scientists and other experts must address right to try laws in ways that are meaningful to legislators and the public,” she wrote. “Experts should present a full picture of what happens to patients who succeed in gaining access. The selective storytelling that has dominated right to try campaigns presents a distorted picture of patient experiences, contributing to policies that could actually disserve patients.”
A more informed debate could and should produce better legislative decisions about Right to Try. And such debate could influence access advocacy as well, Dresser said.
“The Right to Try campaign may be a small policy development, but it raises fundamental questions about our nation’s attitudes toward death and dying,” Dresser wrote. “Right to Try laws portray unproven interventions as desirable, even praiseworthy, responses to life-threatening illness.
“A more informed debate could reveal the human costs of this approach, drawing attention to alternative policies offering more meaningful help to people near the end of their lives.”