Genoa Barrow | Senior Staff Writer

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For decades, African American lawmakers have taken action and led the charge to support people living with sickle cell. The following is a brief list of key efforts.

On March 21, 2023 California Congresswoman Barbara Lee joined Florida Congressman Charles Christ in introducing H.R. 7177, a bill that would amend the Public Health Service Act, in part, to authorize a scholarship and loan repayment program to incentivize physicians to enter into the field of sickle cell disease research and treatment.

On March 21, 2023 Congressman Danny K. Davis (D-Illinois) introduced H.R. 1672, which would establish and provide funds for state Medicaid programs to improve outpatient care for individuals with sickle cell disease, with a focus on young adults and pregnant women.

Congresswoman Barbara Lee sponsored HR 8855 on September 15, 2022 to establish a program to address sickle cell disease and other heritable hemoglobinopathies. 

California Assemblymember Mike Gipson (D-Carson) authored and introduced AB 1105 on Feb. 21, 2019, to establish a three-year pilot program designed to improve care and treatment for those living with sickle cell disease. The bill set aside $15 million from the state budget to the Department of Public Health to develop multiple adult sickle cell disease clinics across the state in the geographic areas where the largest numbers of adults with sickle cell disease live. The effort became a reality with Gov. Gavin Newsom’s Budget Act of 2019.

On February 28, 2018, U.S. Senator Scott, Tim [R-South Carolina ] introduced S.2465, The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018. The bill was passed by Congress on December 10 and signed into law by President Donald Trump a week later, committing to much-needed SCD research geared towards increasing the understanding of prevalence, distribution, outcomes, and therapies. It also reauthorized SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA), and authorized the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, academic institutions and non-profit organizations.

In 2017, AB 1488, the Sickle Cell Treatment Act, was the first piece of legislation to mandate the development of a Sickle Cell Disease Center which was to provide care for patients and train medical providers throughout California. The bill passed, but lacked funding to actually center a program.

In 1983 Julian Dixon, a member of the Congressional Black Caucus and former California Assemblymember, authored a bill to designate September as National Sickle Cell Awareness Month. The bill was co-sponsored by Oakland-based Congressman Ron Dellums.

Ron Dellums was among those urging action on sickle cell on the national level back in the 1970s with such bills as HR 11170. In 1972, Congress passed the National Sickle Cell Disease Control Act which, for the first time, provided authority to establish education, information, screening, testing, counseling, research, and treatment programs. Richard Nixon was president at the time.

This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.