New Legislation Aims to Decrease Disparities in Access to Cancer Clinical Trials

March 28, 2019

Washington, D.C. – Legislation introduced today by Rep. Elijah Cummings (D-Md.) aims to decrease disparities in access to cancer clinical trials that persist within certain underrepresented communities. The Henrietta Lacks Enhancing Cancer Research Act of 2019 would direct the U.S. Government Accountability Office (GAO) to study federal and state policies that directly impact participation rates in cancer clinical trials. The GAO would also be tasked with recommending potential policy changes across federal agencies that would reduce barriers that currently keep certain patients from enrolling in clinical trials.

The bill is named in honor of Henrietta Lacks, an African-American woman who died of cervical cancer in 1951. To this day, cells cultivated during Ms. Lacks’ treatment have been used by medical researchers for some of modern medicine’s most important breakthroughs, including the development of the polio vaccine and treatments for cancer, HIV/AIDS and Parkinson’s Disease.

Last year, the American Cancer Society Cancer Action Network (ACS CAN) released a landscape report highlighting many of the barriers that prevent cancer patients from accessing potential new treatments through a clinical trial. The report shows that cancer patients from minority groups and those who are 65 or older face additional barriers to enrolling in a clinical trial. A separate ACS CAN report also shows that significant disparities continue in cancer incidence, survival, morbidity, and mortality among specific population groups in the U.S. 

The following is a statement from Lisa Lacasse, president of ACS CAN, regarding the introduction of the Henrietta Lacks Enhancing Cancer Research Act of 2019:

“Clinical trials present patients with an opportunity to access the most cutting-edge cancer treatments, so the option to participate must be equitable and easy for patients regardless of race, socioeconomic status, or age.

“As science drives groundbreaking research forward, clinical trials are critical to saving more lives. It is vital that policymakers have a comprehensive understanding of barriers to patient participation in clinical trials and guidance on necessary steps to eliminate disparities in access to advances in cancer care. The Henrietta Lacks Enhancing Cancer Research Act is a critical first step in helping to ensure underserved communities have equal access to medical progress.

“ACS CAN is proud to have worked directly with Rep. Cummings in the drafting of this legislation and applaud him for introducing the Henrietta Lacks Enhancing Cancer Research Act of 2019, legislation that aims to study and address the barriers and disparities that currently prevent far too many cancer patients from enrolling in a clinical trial.”


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