Cummings, Van Hollen, Baltimore Congressional Delegation Introduce Legislation Honoring Henrietta Lacks
Washington, D.C. (March 28, 2019) - Today, during Women’s History Month, Congressman Elijah E. Cummings (MD-07), U.S. Senator Chris Van Hollen (D-MD), U.S. Senator Ben Cardin (D-MD), Congressman Dutch Ruppersberger (MD-02), and Congressman John Sarbanes (MD-03) introduced the Henrietta Lacks Enhancing Cancer Research Act, legislation honoring the extraordinary life and legacy of Henrietta Lacks. The bill will examine access to government-funded cancer clinical trials for traditionally underrepresented groups.
Lacks, a Black woman, died of cervical cancer in 1951. During her cancer treatment, doctors took samples of her tumor, and from this the HeLa cell line was created. Without her or her family’s knowledge, her cells were used in medical research and helped lead to some of medicine’s most important breakthroughs, including the development of the polio vaccine, along with treatments for cancer, HIV/AIDS, leukemia and Parkinson’s disease.
“Henrietta Lacks changed the world, and millions of people have benefited from her remarkable HeLa cells and their contributions to medicine. However, while the cell line became famous, the woman who provided it was not recognized—a disparity that is wrong, and sadly affects far too many women of color,” said Congressman Cummings. “That is why I have introduced legislation directing the Government Accountability Office to publish a report on the barriers facing traditionally underrepresented communities to participate in federally-funded cancer clinical trials. Armed with this information, we can continue to advance research and cancer care in a way that is inclusive of all individuals.”
"Henrietta Lacks – and the contribution of her unique cells – have allowed for huge advances in medical research that have saved countless lives. For too long her story went untold, and this legislation highlights her important contribution," said Senator Van Hollen. "In addition to recognizing her story, we also must work to make sure that all people – especially those from often marginalized communities – are represented in cancer trials and ultimately get the treatment they deserve."
“This legislation is an opportunity to help address barriers that minority and low-income communities may face when attempting to participate in federally funded clinical cancer trials. Overcoming those barriers and guaranteeing robust enrollment and representation of diverse communities is absolutely critical to the success of clinical cancer trials,” said Senator Cardin. “Some people’s contributions are measured by the number of lives they touched, and others by lives they saved. You can measure the contributions of Henrietta Lacks in both ways, and the totals will continue to increase far into the future, as more and more families are spared the loss of their loved ones owing to the medical advances that Ms. Lacks enabled.”
“I can think of few Marylanders – or even Americans – who have contributed more to modern medicine than Henrietta Lacks,” Congressman Ruppersberger said. “Her life-saving contributions will continue to advance cures for debilitating diseases for generations to come. I encourage my colleagues to support this study as quickly as possible.”
“This bill not only honors the life and legacy of Henrietta Lacks, it also builds on her legacy by directing the GAO to closely examine and report on the considerable disparities that still exist in federally funded clinical trials,” said Congressman Sarbanes. “We must ensure that underrepresented communities are equally represented in clinical trials, so that lifesaving cancer treatments and remedies are accessible to all Americans.”
“On behalf of the entire Henrietta Lacks family, we would like to thank Congressman Elijah Cummings and everyone in support of this amazing bill,” said Alfred Lacks-Carter Jr., the grandson of Henrietta Lacks. “The Lacks family feel strongly about the importance of clinical trials for people of color and the poor and underrepresented. This bill will be instrumental in eradicating cancer and to have it named after my grandmother Henrietta is a great honor.”
Despite the progress that Lacks’ cells helped to achieve, many communities still face glaring health disparities. For example, while cancer incidence rates are highest among Non-Hispanic White females, Non-Hispanic Black females have the highest death rates. Clinical trials are a key component to advancing cancer research and treatment. Currently, about 20 percent of cancer clinical trials fail because of lack of patient enrollment, with racial and ethnic minorities, and older, rural, and lower-income Americans generally underrepresented in such trials.
The Henrietta Lacks Enhancing Cancer Research Act would direct the Government Accountability Office to study and publish a report regarding barriers to participation in federally funded cancer clinical trials by populations that have been traditionally underrepresented in such trials.