WASHINGTON, D.C.—More than 150 organizations representing patients, providers and health equity advocates sent a letter to Congress today urging them to pass the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act into law. The bipartisan bicameral legislation, sponsored by Sens. Robert Menendez (D-N.J.) and Tim Scott (R-S.C.), and Reps. Raul Ruiz (D-Calif.) Larry Buschon (R-Ind.), would allow trial sponsors to reimburse patients for non-medical costs associated with their trial participation, such as travel, parking, food, or lodging; allow sponsors to provide patients with technology necessary to facilitate remote participation in clinical trials; and require the Department of Health and Human Services (HHS) to create guidance on the use of decentralized trials to increase trial diversity.
“These changes would greatly benefit patients and research alike,” said Lisa Lacasse, president of the American Cancer Society Cancer Action Network (ACS CAN), which organized the group letter. “Patients overwhelmingly want to participate in clinical trials, but patients in remote areas or with limited incomes often can’t enroll because they can’t afford to do so, or they don’t have access to the technology necessary to make remote participation possible. Ensuring these costs and tools can be covered by the trial sponsors will make access to lifesaving clinical trials more equitable and ensure trial participants are more socioeconomically, geographically, and racially diverse.”
A recent ACS CAN Survivor Views survey found while 77% of patients said they would like to participate in a trial if it was as simple as their regular care and nearly half would do so even if it required more visits and distant travel, that willingness dropped based on income. Among those whose household incomes were above $125,000, 62% expressed a willingness to go through extra effort to be in a clinical trial, while 41% of those making under $70,000 were willing to do so. Financial considerations were further reflected by the finding that 79% of respondents said they would be more likely to participate in a clinical trial located outside of their local area if the trial sponsor helped to organize or pay for travel and lodging, and 50% would be much more likely to do so.
“Removing barriers to clinical trial enrollment that will increase participation among representative populations is absolutely critical to our efforts to reduce cancer,” said Lacasse. “The DIVERSE Trials Act would significantly alleviate some economic and logistical barriers preventing patients from enrolling in potentially breakthrough trials. We urge Congress to quickly pass this bipartisan bill into law.”
ACS CAN will be participating in a session on the scientific and social imperative of diversity in clinical trials at the Congressional Hispanic Caucus Institute Annual Health summit this Wednesday.