The book “The Right to Try” shares the stories of cancer patients who have failed treatment then are turned down entry to experimental drug trials. These situations have spurred the creation of “right-to-try” laws in various states.
When you have a terminal illness and all else has failed, shouldn’t you be free to enroll in a medical trial of a promising new drug? This isn’t a distant hypothetical, but a serious predicament that faces thousands of Americans every year.
In a recently published book, The Right to Try, Darcy Olsen, president of the Goldwater Institute, addresses the battle faced by the terminally ill who apply to enter drug trials but are turned down. Olsen has worked to introduce “right-to-try” laws across the United States. So far, the bills have been approved in 24 states since 2014—with a collective vote record of 3,045 state lawmakers in favor and only 26 against.
The problem is as follows: The average length of a trial has increased by 70% from the 1990s to the mid-2000s, and it can now take 15 years for the Food and Drug Administration (FDA) to approve a new medicine. This means that treatments that doctors recognize as highly effective often have to spend further months or years wading through bureaucratic hurdles. The FDA has a “compassionate use” exemption for medical trials, but the qualifying process is extremely onerous, with a prohibitive list of criteria. Some 40% of cancer patients try to enrol in clinical trials every year, writes Olsen, but only 3% succeed.
Olsen tells Quartz that this is an unfortunate by-product of the FDA’s duty: