Clinical trials offer patients with difficult-to-treat forms of cancer a chance to receive the most up-to-date and promising care available with the prospects of improved health outcomes and the benefit of advancing medical research. Most patients express a willingness to participate in clinical research, yet only a small fraction ultimately end up enrolling in a trial due to barriers that make participation difficult or even impossible. Consequently, approximately 20% of cancer clinical trials fail due to insufficient patient enrollment.
Barriers to treatment
One of the most common barriers to trial participation is location. Most cancer trials are concentrated at large academic centers that have the resources to dedicate to research, yet most cancer patients receive their care at small, local oncology practices. According to a 2018 American Cancer Society Cancer Action Network (ACS CAN) report, Barriers to Patient Enrollment in Therapeutic Clinical Trials for Cancer, only about 1 in 4 patients has access to clinical trials where they are being treated. Yet, if asked to enroll in an available trial, more than half of eligible patients typically agree to do so.
Another barrier is cost. While private health insurance as well as Medicaid and Medicare are required to cover the routine medical costs of trial participation, there is no such coverage for other non-medical out-of-pocket expenses patients may incur.
Trial participants are often required to see their doctors more frequently, which can mean more money spent on things like gas, parking, food, and lodging. Those costs add up, especially for low-income patients. Research has shown financial burdens can lead to a nearly 30% lower trial participation rate among individuals with annual family income of less than $50,000.
Cancer care inequity
Unfortunately, these barriers and others often contribute to long-standing inequities in cancer clinical trials. Despite having an increased burden of disease, racial and ethnic minority groups, older adults, rural residents, and those with lower socioeconomic status are consistently underrepresented in cancer clinical trials.
This underrepresentation hampers research and, without deliberate efforts to rectify these disparities, research may miss why cancer outcomes are often worse for patients with limited access to care, lower incomes, and other factors.
No one should be disadvantaged in their fight against cancer because of how much money they make, the color of their skin, their sexual orientation, their gender identity, their disability status, or where they live.
ACS CAN has prioritized health equity to ensure that cancer patients are provided with equitable care based on social determinants of health. This is why ACS CAN is working hard to remove these barriers and ensure every patient has equitable access to clinical trials.
In 2018, ACS CAN began analyzing common barriers to patient enrollment and provided stakeholders in the research ecosystem with over 20 recommendations that should be taken to make trial enrollment easier for patients. Earlier this year, ACS CAN issued another report targeted specifically at reducing disparities in clinical trials.
Right now, ACS CAN is working to help pass the bipartisan DIVERSE Trials Act through both chambers of Congress. The legislation would help address health equity and disparities by allowing clinical trial sponsors to reimburse patients for non-medical costs associated with their trial participation — such as travel, parking, food, or lodging — and would allow trial sponsors to provide patients with the technology necessary to facilitate remote participation in clinical trials.
The goal of cancer research is to generate new knowledge that can be used to improve survival rates and quality of life for all patients with cancer. But to achieve that goal, it’s crucial that clinical trials reflect the broad diversity of cancer patients they’re hoping to treat. ACS CAN is dedicated to working with patients, survivors, and their loved ones to ensure that happens and to make cancer clinical trials accessible and available to all interested patients. Together, we can improve access and address healthcare disparities for a world with less cancer.
Lisa A. Lacasse, M.B.A., President, American Cancer Society Cancer Action Network (ACS CAN)