ASH Advocacy Efforts Related to Sickle Cell Trait Screening and Athletic Participation

2012-11-14

ASH developed and released its Policy Statement on Screening for Sickle Cell Trait and Athletic Participation. After reviewing the evidence surrounding screening for sickle cell trait for the purpose of participating in athletics, ASH concluded that the current NCAA policy is both overly broad and insufficient because: screening without implementing interventions is not effective; screening without providing counseling/education for the student athlete is not effective; and screening athletes only for sickle cell trait overlooks other conditions that leave athletes more vulnerable to exertion-related illness. Specifically, the ASH policy states that:

  • ASH does not support testing or disclosure of sickle cell trait status as a prerequisite for participation in athletic activities.
  • ASH recommends the implementation of universal interventions to reduce exertion-related injuries and deaths, since this approach can be effective for all athletes irrespective of their sickle cell status.
  • ASH believes that the NCAA Division I policy, as currently written and implemented, has the potential to harm the student athlete and the larger community of individuals with sickle cell trait.
  • ASH strongly supports increased biomedical and population-based research on sickle cell trait as it relates to exertion-related illness, as well as other clinical conditions.

The policy was released with a multi-pronged distribution strategy, including media outreach, outreach to various stakeholder groups, and outreach to ASH members. Dr. Janis Abkowitz (ASH's President-Elect) served as the official ASH spokesperson, addressing questions about the policy and its development and Drs. Michael DeBaun, Alexis Thompson, and Richard Lottenberg served as the Society's medical experts. In addition, message points addressing specific scientific/medical questions about sickle cell trait were distributed to ASH members in case they were approached with questions.

The ASH policy garnered significant media attention and support from other associations. The following organizations endorsed ASH's policy: the Sickle Cell Disease Association of America, American Society of Pediatric Hematology/Oncology, American Public Health Association, Association of Public Health Laboratories, and American Society of Clinical Pathology. The policy also generated attention from various media outlets, including coverage in several national, top-tier outlets, such as: The Wall Street Journal, CBS Sports (online), and National Public Radio. In addition, ASH's policy was covered in several trade publications serving the hematology community, such as Hem/Onc Today and MedPage Today, as well as in Athletic Business, which serves the athletic training community.

ASH has been involved in the following efforts to educate policy-makers, physicians, and the public about sickle cell trait and to urge the NCAA to rescind its current policy:

  • Stakeholder Discussions: As a result of the ASH policy, the NCAA and the American College of Sports Medicine (ACSM) invited ASH representatives to attend a March meeting to discuss sickle cell trait and athletic participation. Drs. Jan Abkowitz and Alexis Thompson represented the Society at the meeting where participants discussed a research agenda for sickle cell trait, including the need for increased biomedical and population-based research on sickle cell trait as it relates to exertion-related illness as well as other clinical conditions. Drs. Abkowitz and Thompson and ASH staff continue to discuss research priorities for sickle cell trait and potential collaboration with the NCAA and ACSM and advocate for a coordinated approach to additional research.
  • Federal Agency Partnerships: ASH staff continues to discuss research priorities for sickle cell trait and potential collaboration with the NCCA with leaders at the NHLBI. In addition, in an effort to ensure that the Centers for DiseaseControl and Prevention (CDC) provides the most up-to-date and accurate information about sickle cell trait to the public, ASH representatives are working with CDC on developing a Sickle Cell Trait Education and Resource Tool Kit.
  • Congressional Advocacy: In early February, the ASH Officers met with the offices of Representatives Chaka Fattah (D-PA) and Keith Ellison (D-MN), both active members of the Congressional Black Caucus (CBC), to discuss the ASH policy statement. The Officers also expressed the Society's interest in conducting a congressional briefing on this topic with the CBC in the future.

    In addition, during the Committee on Government Affairs Spring Hill Day, Committee members urged Senate offices to submit appropriations report language encouraging the NHLBI to undertake research that can inform current policies related to sickle cell trait screening and participation in athletic activities. This resulted in including the Society's recommended language in the Senate Appropriation Committee's FY 2013 Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations report. 

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