Lawmakers approve bill to give equal access to cancer clinical trials and improve minority participation
Boston, MA January 4, 2020 – Massachusetts Governor Charlie Baker has signed into law a compromise healthcare bill known as “an Act promoting a resilient health care system that puts patients first.” A portion of the bill calls for reimbursing cancer patients for the out-of-pocket expenses associated with clinical trial participation and creating across the board reimbursement programs in the state.
The anticipated result is that thousands of cancer patients in Massachusetts will gain access to advanced treatments offered in clinical trials. The goal is to improve participation and retention in cancer clinical trials, especially among underserved populations.
The legislative action is the result of an effort by Lazarex Cancer Foundation and members of the state legislature, including Representative Hannah Kane, the author and lead on the cancer trial language, Leader Ronald Mariano, former Senator Richard Ross, and others, to bring attention to this critical problem. Co-authored by Lazarex, the legislation clarifies that reimbursing patients for the out-of-pocket expenses necessary to travel to a clinical trial site are not to be considered inducements or coercion.
A national study found that patient households making less than $50,000 annually were almost 30 percent less likely to participate in clinical trials. This disparity threatens one of the most basic ethical foundations of clinical research: the requirements that the benefits of research be made available equitably among all eligible individuals.
Clinical trials offer advanced treatments before the general public can access them. All new treatments must complete a clinical trial before becoming FDA approved, and they must have patients enrolled to be successful. However, an estimated 95 percent of cancer patients don’t enroll because clinical trial sites are often far from home, making travel for patients both difficult and financially burdensome.
“After five years of advocating for this legislation we are thrilled to see this action.” Lazarex Founder Dana Dornsife said, “If we don’t have fully enrolled clinical trials with a diverse pool of patients, new treatments are not possible. Clinical trials are the pathway to new treatments. But when you have only 5% of cancer patients enrolling in clinical trials and about 50% of clinical trials failing because they can’t enroll enough patients, the pathway is blocked. That’s why Lazarex raised this issue in Massachusetts.”
The bill was passed by both the House and Senate just before the legislative session ended for the year. Governor Baker signed the bill on January 2nd. Similar legislation is currently being considered in Florida, and New Mexico, and is already law in California, Pennsylvania, Texas, Illinois and Wisconsin.
About Lazarex Cancer Foundation
Lazarex is the only non-profit in the United States that assists patients with finding clinical trials and reimburses them for the out-of-pocket travel costs involved in getting to those clinical trials. In its 14 years, Lazarex has helped reimburse the travel expenses for more than 7,000 patients in clinical trials. In 2018, at the urging of Lazarex, the U.S. Food and Drug Administration (FDA) changed its official guidance, issuing new language allowing pharmaceutical companies to reimburse patients for travel costs to get to clinical trials, although not all trial sponsors do this.