By Genoa Barrow | OBSERVER Senior Staff Writer
The Sickle Cell Disease Partnership wants voters and lawmakers nationwide to adopt a sense of urgency.
The partnership encourages constituents to reach out to their members of Congress in support of three pieces of legislation that would increase long-overdue access to treatment and improve the lives of the 100,000-plus Americans living with the disease.
The national effort is led by Dr. Brett Giroir, senior adviser to the Sickle Cell Disease Partnership, and Regina Harfield, president of the Sickle Cell Disease Association of America. Dr. Giroir, a physician, scientist and innovator, is a pediatric critical care specialist by training and previously served as the assistant health secretary in the U.S. Department of Health and Human Services, and as an admiral in the U.S. Public Health Service Commissioned Corps. Hartfield has served on the association’s board of directors for three years, including as chair of the fundraising committee.
The two call on Congress to pass three pieces of legislation: the Sickle Cell Disease Comprehensive Care Act (House Resolution 6216/Senate Bill 3389), Sickle Cell Care Expansion Act (HR 7177/SB 4425) and the Treatment Centers Act of 2022 (HR 8855/SB 4866) to boost funding for research and increase access to life-changing treatment.
The Sickle Cell Disease Comprehensive Care Act (HR 6216/SB 3389) is bipartisan House and Senate legislation that authorizes the federal government to establish a demonstration program in up to 10 states to provide comprehensive care to Americans with sickle cell disease who are low-income or disabled and receive health coverage through a state Medicaid program. The legislation would ensure such individuals in participating states have coordination of, and access to, clinical, mental health, and ancillary and support services they need because of their disease. The legislation also would require reporting and evaluation to study the results of the demonstration project.
The Sickle Cell Care Expansion Act (HR 7177/SB 4425) would authorize a scholarship and loan repayment program to incentivize medical physicians to enter into the field of sickle cell disease research and treatment. The bill also would award grants to health clinics, community organizations and other local nonprofits that work with individuals who have sickle cell disease, to help improve health literacy, equip them with information on health and community services related to sickle cell disease, and improve the care and treatment decision-making process related to the disease.
The Sickle Cell Disease Treatment Centers Act of 2022 (HR 8855/SB 4866) establishes a nationwide network of more than 120 sickle cell disease treatment centers based on a hub-and-spoke framework and provides support for 100 community-based organizations. The legislation also creates a national/regional coordinating center to coordinate the National Sickle Cell Disease Treatment Center Program and authorizes annual appropriations of $535 million to address the issue.
“The time for Congress to act is now,” Dr. Giroir said. “For too long, our nation’s efforts to address this painful, debilitating disease have been woefully inadequate, leaving patients and families behind — without access to high-quality care and without sufficient progress toward new treatments and cures.”
“Sickle cell disease affects African Americans at a disproportionate rate, and frighteningly, nearly 1 in 12 are diagnosed as genetic carriers. For far too long, policymakers have stood on the sidelines. Congress can take a giant first step to addressing this significant health inequity by passing legislation this session and ensuring sickle cell warriors get the care and the support they need now.”
Authors and co-sponsors of the trio of bills include Reps. Barbara Lee (D-California), Danny K. Davis (D-Illinois), Pete Aguilar (D-California), Sheila Jackson Lee (D-Texas) and Sen. Cory Booker (D-New Jersey). Reps. Lee and Davis have served as co-chairs of the Congressional Sickle Cell Disease Caucus.
“As we recover from a global pandemic that has strained our public health systems, it’s more critical than ever that we invest in research and awareness campaigns to ensure that we combat this disease, especially in communities of color and those who are medically underserved,” Rep. Lee said in 2021.
For more on the effort to prioritize sickle cell disease at the national level, visit sicklecellpartnership.org.
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.