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The Voice of the Black Community


Federal legislation would remove barriers to cancer clinical trials
Bill opens access to underrepresented
Published Sunday, January 3, 2021
by Herbert L. White

A highway marker in Clover, Virginia acknowledges the contributions of Henrietta Lacks, whose cancerous cells were developed into treatments for cancer, Parkinson's disease and HIV/AIDS. A bill passed last month by the U.S. House of Representatives would remove barriers to participation in federally sponsored cancer clinical trials among underrepresented communities.

Legislation that improves access to clinical trials for people of color and closing health gaps is making its way through Congress.

The House of Representatives last month passed the Henrietta Lacks Enhancing Cancer Research Act to remove barriers to participation in federally sponsored cancer clinical trials among underrepresented communities. The bill is named after a Black woman who died from cervical cancer in 1951, but whose cells – harvested and cultivated without her or relatives’ permission during treatment – have been used to develop medical breakthroughs, including Jonas Salk’s polio vaccine and therapeutics for cancer, HIV/AIDS and Parkinson’s disease. 

Lacks’ cancerous cells, still in use 70 years after her death, are called the HeLa immortal cell line and considered the gold standard of information among medical researchers.

“While cancer impacts everyone, it does not affect everyone equally,” said Lisa Lacasse, president of the American Cancer Society Cancer Action Network. “The Henrietta Lacks Enhancing Cancer Research Act is critical to changing this reality, improving cancer outcomes and reducing health disparities in this country.”

The legislation would direct the federal government to study policies that limit participation in federally sponsored cancer clinical trials and recommend changes that would reduce barriers to enrollment.

“This year marks Henrietta Lacks’ 100th birthday, and we are proud of all the good that she has done for the world,” said Lawrence Lacks Sr., her eldest son. “While Henrietta Lacks’ HeLa cells were taken without her knowledge or consent, her contribution has had a significant and wide-reaching scientific impact. This legislation honors and builds on my mother’s legacy by helping to ensure communities of color have more equitable access to advances in cancer treatment.”

People of color and other medically underserved groups have higher cancer rates and are less likely to be diagnosed early or receive optimal treatment compared to other demographic groups. Yet communities of color, older Americans, rural Americans and poorer Americans remain under-represented in clinical trials. There is also a four-fold disparity in the proportion of Blacks diagnosed with cancer compared to the proportion who participate in clinical trials submitted to the Food and Drug Administration for drug approval.

“The current statistics are unacceptable,” Lacasse said. “Clinical trials represent the best opportunity for all patients to receive the most cutting-edge cancer treatments and need to be easy for patients to access, regardless of race, ethnicity, socioeconomic status, geographic location or age. “We cannot achieve our mission of a world with less cancer until we reduce the burden of this disease across all communities.”




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