2021 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait

In 2021, ASH continued to work with federal agencies, leaders at the United States Department of Health and Human Services (HHS) and the U.S. Congress to help enhance and expand government activities in sickle cell disease (SCD) research, training, and services. ASH staff has continued to educate congressional members about SCD and identify opportunities to advance the SCD advocacy agenda.  The following includes highlights of ASH’s related efforts over the past year.

Advocacy with HHS

• In November, Alexis Thompson, MD, MPH, represented ASH at a SCD Stakeholder Roundtable meeting with Secretary Xavier Becerra, Secretary of the U.S. Department of Health and Human Services (HHS) to discuss SCD and opportunities for HHS to take timely steps to address the burden of the disease.
• In July, the ASH leadership and staff had an introductory meeting with ADM Rachel L. Levine, MD, HHS Assistant Secretary for Health, to discuss ASH’s efforts on SCD, learn more about Dr. Levine’s priorities, and discuss opportunities to collaborate to improve the lives of people living with SCD.
• In the spring, ASH met with leaders of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), and representatives from the Division on Blood Disorders in NCBDDD to discuss a strategy to address reproductive health and maternal health issues facing individuals with hematologic conditions, especially SCD.
• The ASH Research Collaborative and the Innovative Genomics Institute, in collaboration with the U.S. Food and Drug Administration (FDA), have engaged stakeholders to support the development of ASH RC’s Data Hub and to explore methods for Accelerating Innovations for SCD with Real World Evidence (RWE).  

SCD Advocacy on Capitol Hill 

• ASH has continued its work with SCD champions in Congress to introduce legislation that would direct the Centers for Medicare and Medicaid Services to create a Medicaid demonstration project to improve access to comprehensive, high quality outpatient care, including recommended clinical, mental health, ancillary, and support services, for individuals living with SCD who are enrolled in Medicaid, with an emphasis on targeting young adults and pregnant women with SCD.
  • On September 29, ASH, along with 40 other SCD partner groups, sent a letter to Senators Cory Booker (D-NJ) and Tim Scott (R-SC) and Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) to encourage them to introduce the SCD Medicaid demonstration legislation.
  • On December 9, Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) introduced H.R. 6216, the Sickle Cell Disease Comprehensive Care Act. Senators Booker and Scott introduced companion legislation (S. 3389) on December 14, 2021.
• As part of the Society’s SCD advocacy strategy and new commitment to improve maternal health care outcomes in hematology, ASH, along with the American College of Obstetricians and Gynecologists, the Association of Maternal & Child Health Programs, the Sickle Cell Disease Association of America, the Foundation for Women and Girls with Bleeding Disorders, and the Sickle Cell Reproductive Education Directive cosponsored a virtual congressional briefing, Their Lives Depend on Us: Rising to the Challenge of Providing High Quality, Evidence-Based Reproductive Health Care for Women with Sickle Cell Disease, on October 28, 2021.  View a recording of the briefing.
  • The program, which featured ASH members and a patient advocate, presented an overview on the current state of reproductive health care for women with SCD, including how comprehensive care is proven to decrease the risk of adverse pregnancy outcomes; a story of a mother’s pregnancy journey with the disease; and a presentation of proposed policy strategies—such as the proposed SCD Medicaid demonstration project—to improve health outcomes. Over 150 people attended the program.
• ASH continues to advocate for increased funding for SCD programs at the Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA).  In March, ASH led a group of over 70 SCD stakeholder organizations in sending a letter to the Chairs and Ranking Members of the House and Senate Appropriations Committees and Labor HHS Subcommittees regarding support for fiscal year (FY) 2022 funding for these programs.
  • Despite FY 2022 having begun on October 1, 2021, Congress has not yet finalized 2022 spending levels for any federal programs or agencies. The chart below summarizes existing and proposed funding levels for the CDC Sickle Cell Data Collection program, and HRSA SCD Treatment Demonstration and Sickle Cell Newborn Screening Programs. Congress will be working to finalize FY 2022 spending levels between now and the February 18, 2022 expiration of the short-term funding measure that is currently funding the federal government.

SCD-Focused Payment and Coverage Related Advocacy

• ASH staff, members and the SCD Coalition met with a representative from the Centers for Medicaid and CHIP Services to review and discuss questions and concerns regarding the recently released Medicaid and CHIP SCD Report, T-MSIS Analytic Files (TAF) 2017. 
• ASH requested a meeting with Centers for Medicare and Medicaid Administrator, Chiquita Brooks-LaSure, to discuss access to care issues related to SCD. ASH highlighted three policy priorities related to payment and coverage that the Society would like to discuss with the Administrator: ASH’s efforts to direct CMS to work with state Medicaid programs to pilot reimbursement models for the delivery of coordinated SCD care and support services; support efforts by CMS to improve access to therapies and services currently considered standard of care for treating individuals with SCD; and support efforts by Congress and through federal rulemaking to permanently expand many of the telehealth flexibilities currently allowed under the COVID-19 public health emergency.  The meeting will likely take place early in the New Year.

Efforts to Raise Awareness for Sickle Cell Trait

• In May, ASH issued an updated position statement asserting that it is medically inaccurate to claim sickle cell trait as a cause of death based solely on the presence of sickled cells at autopsy. ASH’s policy was updated in response to the recent investigation and coverage in The New York Times, How a Genetic Trait in Black People Can Give the Police Cover. ASH President, Martin Tallman, MD, also submitted a letter to the editor that was published online in The New York Times on May 25.