Clinical trials of new treatments can be a lifeline to cancer patients.

Unfortunately, the costs of participating in a trial can add up, making it harder for low-income patients and people of color to participate. 

Less than 5% of cancer patients participate in clinical trials, and of that group, only a third are people of color. A new state law aims to fix that.

The Cancer Clinical Trial Participation Act, Senate Bill 1711, makes it easier to take part in an experimental drug trial. “Although it was legal to reimburse a patient before the Illinois law passed on December 20, 2019, it wasn’t a commonly followed practice,” said Dana Dornsife, founder of California-based Lazarex Cancer Foundation, which lobbied for passage of this legislation in Illinois and three other states.

“The Food and Drug Administration (FDA) created drug trial guidelines decades ago saying, ‘You can’t coerce or induce a patient with financial gain to get them to participate’. The reason the FDA produced that guideline was to protect people from being taken advantage of. The unintended consequence of that language was that the very population of people they were trying to protect were eliminated from the potential patient pool, because they couldn’t afford to be part of the trial,” she said.

An estimated 54% of patients have to travel outside their region to participate in a cancer trial. Illinois’ Cancer Clinical Trial Participation Act removes some of the financial barriers to patient participation, stating that patients may be reimbursed for costs associated with being part of a trial.

“There was a study conducted five years ago showing that people with lower annual incomes were about a third less likely to be able to participate in cancer clinical trials,” said west suburban Democratic state Sen. Suzy Glowiak Hilton, the bill’s sponsor. “Transportation and overnight expenses all contribute to the costs that make it so people can’t participate. This new legislation signals to the pharmaceutical industry that it’s OK to reimburse patients and you should include that in your budget for every clinical trial. Hopefully this will make health care more accessible.”

Dr. Leon Platanias, director of Northwestern University’s Robert H. Lurie Comprehensive Cancer Center, hopes this legislation will result in more minority participation in cancer drug trials.

“In Chicago, we have a major problem with health care disparities between different communities,” Platanias said. “There have been some studies showing African American women with breast cancer have up to a 60% higher mortality than white women. We live in an era of very rapid development, where clinical trials can save lives. But we have to do these trials in order to get the drugs approved.”