2022 ASH Advocacy Efforts Related to Sickle Cell Disease

Jan 12, 2023

ASH continues to advocate for issues impacting hematology research and practice, including research and public health funding, access to quality care for patients, physician payment and coverage for hematologists, and policy issues related to sickle cell disease (SCD). The following overview provides information on advocacy highlights on efforts related to sickle cell disease

 

In 2022, 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 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.

 

SCD Advocacy on Capitol Hill

  • Building on the success of the introduction of the SCD Comprehensive Care Act (H.R.6216/S.3389) at the end of 2021, ASH advocacy in 2022 focused on the addition of cosponsors of both the House and Senate versions of the bill, which would direct CMS to create a demonstration program to improve access to comprehensive, high quality outpatient care for individuals living with SCD who are enrolled in Medicaid.
    • Since the legislation was introduced in late 2021, a total of 423 letters and 111 tweets have been generated through the continuing work of the ASH Grassroots Network and ASH committee engagement on the issue.
    • Members of the Committees on Government Affairs and Practice advocated for the SCD Comprehensive Care Act during their virtual advocacy meetings in the spring, and additional advocacy visits with ASH SCD experts were held throughout the year.
    • Participants in the ASH Advocacy Leadership Institute (held October 19–20, 2022) met with staff in more than 35 congressional offices in 19 states and urged cosponsorship of the SCD Comprehensive Care Act. Part of ASH’s advocacy is centered on getting this legislation included in a larger Medicare/Medicaid bill by the end of the legislative session. The bill was not included in the end of year package, but advancing the bill through Congress will remain a priority for ASH in 2023.
    • Throughout 2022, ASH also worked with many other SCD stakeholder groups to encourage support for the bill.
      • In mid-November, ASH led a group of over 50 other organizations in sending a letter to House and Senate leaders urging them to include this legislation in any end-of-year omnibus bill.  
      • In mid-May, ASH also let a group of more than 60 organizations within the SCD community in sending a letter to leaders of the Senate Finance Committee and the House Energy and Commerce Committee urging the committee to advance the bill.
    • The legislation ended 2022 with 17 cosponsors in the House and 5 cosponsors in the Senate.
  • ASH has become an advisor to Senator Chris Van Hollen’s (D-MD) staff over the past year, after a member of his staff passed away from complications related to the disease and he pledged to take significant action to address it.
    • Senators Van Hollen and Cory Booker (D-NJ) consulted with ASH before the introduction of the Sickle Cell Care Expansion Act (S. 4425) in mid-June, which aims to incentivize physicians to conduct research related to SCD and to treat individuals living with SCD by expanding the National Health Services Corps loan repayment and scholarship program. The bill would include classical hematology as an area of study eligible under this program.  ASH President Dr. Jane Winter was quoted in the Senate press release issued in conjunction with the bill’s introduction.  Dr. Winter also provided a statement expressing ASH’s support for the House version of this bill (H.R. 7177) when it was introduced by Representatives Charlie Crist (D-FL) and Barbara Lee (D-CA) in March.
    • Senator Van Hollen also asked ASH for input on the Sickle Cell Disease Treatment Centers Act (S. 4866) that he introduced in the Senate with Senator Cory Booker (D-NJ) in mid-September.  Representatives Barbara Lee (D-CA) and Danny Davis (D-IL) introduced the House companion of the bill (H.R. 8855) at the same time.  The bill aims to establish nationwide network of more than 120 Sickle Cell Disease Treatment Centers based on a hub-and-spoke framework. provides support for 100 community-based organizations, and creates a National/Regional Coordinating Center to coordinate the program.
  • Please refer to the 2022 Research and Public Health Funding Advocacy Highlights for more information about ASH’s advocacy to support funding for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Disease Data Collection program and sickle cell programs at the Health Resources and Services Administration (HRSA).

SCD Advocacy with Federal Agencies

  • As a result of ASH’s long-time advocacy with the HHS, ASH and HHS co-hosted the first of three SCD Registry Leaders’ Roundtables in November with federal and non-federal partners.  Roundtables 2 and 3 will be scheduled for the first half of 2023.  The goal of the roundtables is to explore how SCD data capture programs can be leveraged to avoid programmatic redundancies, reduce the data burden at participating sites, and maximize access to data. 
  • In early September, ASH and the American Heart Association (AHA) led a group of 15 other SCD partner organizations in sending a letter to leaders of the HHS, Centers for Medicare & Medicaid Services (CMS), and Agency for Healthcare Research and Quality (AHRQ) to encourage the adoption of the following National Quality Forum (NQF) measures for inclusion in the Medicaid Child Core Measure Set:
    • NQF measure #2797: Transcranial Doppler Ultrasonography Screening among Children with Sickle Cell Anemia
    • NQF measure #3595: Hydroxyurea Use among Children with Sickle Cell Anemia

    As a follow-up, ASH staff and member experts Drs. Titilope Fasipe, J.J. Strouse, and Sarah Reeves, as well as representatives from AHA and other partner groups met with AHRQ Director Dr. Robert Valdez to discuss the importance of the measures. 

    On April 8, ASH sent a letter supporting the Proposed 2022 CDC Clinical Practice Guideline for Prescribing Opioids, which commended the agency for:

    Explicitly stating that the Proposed 2022 Guideline does not pertain to SCD-related pain management, cancer pain treatment, palliative care, and end-of-life care; and

    Emphasizing the gold standard recommendation of a shared decision-making process in patient care.

    In February, ASH members Drs. Chancellor Donald and Sophie Lanzkron along with SCD community leaders met with Centers for Medicare and Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure. to help CMS learn more about the priorities, needs, and concerns of the SCD community and how CMS might assist with and/or collaborate on current activities.  During the second half of 2022, ASH representatives participated in follow-up meetings with CMS leaders to continue to discuss opportunities to improve access to care for individuals with SCD as well as the SCD Comprehensive Care Act.