In the closing days of 2021, bipartisan legislation was introduced in both the U.S. House of Representatives and Senate aiming to combat the poor outcomes that many individuals with sickle cell disease (SCD) encounter, in part because of uncoordinated and inconsistent care. The introduction of the Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S. 3389) is the result of nearly two years of advocacy on behalf of ASH members working with congressional staff and members of Congress to address this serious problem affecting patients. To learn more about the long road to getting this bill introduced in the U.S. Congress, The Hematologist spoke with Vice Chair of the ASH Committee on Government Affairs Dr. Emily Riehm Meier.
“We’ve known for years that too many of our patients who live with SCD have been receiving uncoordinated and erratic care leading to complications and avoidable medical visits. This issue has been especially acute in patients enrolled in Medicaid,” explained Dr. Meier. “If passed and signed into law, this bill will improve access to comprehensive, high-quality, outpatient care for individuals enrolled in Medicaid with SCD.”
A recent Centers for Medicare and Medicaid Services (CMS) report found that more than 50 percent of the estimated 100,000 individuals living with SCD in the United States are covered by Medicaid. Currently, many individuals living with SCD face barriers to evidence-based, quality care such as a shortage of specialized providers, a lack of coordination among health care specialists, and challenges relating to health insurance cost and coverage.
ASH originally began working closely with the Centers for Medicare and Medicaid Innovation several years ago to develop a demonstration program for individuals with SCD enrolled in Medicaid. Simultaneously, ASH spoke with many congressional offices and held congressional briefings to create awareness on SCD and to advocate for this type of program. The COVID pandemic highlighted and exacerbated the severe health disparities that people with SCD face and kickstarted ASH's efforts to work with congressional SCD champions to have legislation introduced. The Sickle Cell Disease Comprehensive Care Act was formally introduced in the House on December 9, 2021, by Representatives Danny Davis (D-IL-7) and Michael Burgess (R-TX-26), followed shortly thereafter by the Senate's version introduced by Senators Cory Booker (D-NJ) and Tim Scott (R-SC).
The Sickle Cell Disease Comprehensive Care Act directs CMS to create a demonstration program in up to 10 states to improve access to high-quality, outpatient care, for individuals with SCD enrolled in Medicaid. Specifically, the bill will establish planning and implementation grants to improve access to comprehensive outpatient care. Priority would be given to states that participate in the Centers for Disease Control and Prevention's Sickle Cell Data Collection program and states with a high prevalence of SCD.
“Congressmen Davis and Burgess and Senators Booker and Scott have been some of our strongest sickle cell champions on Capitol Hill, so when we started to work on introducing legislation, we knew these offices were the first place to start,” recalled Dr. Meier.
The bill aims to ensure coordination and access to clinical care, mental health, and ancillary services that address the physical, mental, and social needs of individuals with SCD. This includes access to services provided by subspecialists, including hematologists, needed to treat the many complications of SCD, as well as supportive clinical services, including vision and dental care, mental health services, access to transportation, and community and social support services.
Dr. Meier explained that “the health system has not been working as it should for too many of our adolescents and young adults with SCD as they transition out of pediatric care and into an often-disjointed world of adult care. This bill aims to fix many of the gaps in care that individuals with SCD face.”
While it has taken nearly two years of behind the scenes work for the legislation to be introduced, more work is needed to have this bill passed and signed into law. ASH needs the help of every member; contact your senators and representative and urge them to cosponsor the Sickle Cell Disease Comprehensive Care Act. ASH has made it easy to send a message to your lawmakers by visiting the ASH Advocacy Center (www.hematology.org/Advocacy) and simply entering your address and clicking “send.”
Additionally, ASH members can participate in the Society's advocacy efforts by joining the Grassroots Network to receive regular updates and the latest news from Washington. Grassroots Network members also receive the monthly Advocacy Update and periodic Action Alerts encouraging them to contact their legislators whenever legislation affecting hematology is introduced or when a key vote is approaching on Capitol Hill. Also, staff in the ASH Government Relations and Practice Department are available to help set up virtual meetings with your legislator's office and provide the information needed to be an effective advocate, including fact sheets and relevant talking points. For more information, visit www.hematology.org/advocacy.
“It's been amazing to see what a group of dedicated hematologists can accomplish in having this legislation introduced,” said Dr. Meier, “if we can keep up this momentum, we’ll be able to have this bill signed into law.”
