In 2012, 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. 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.
Since the release of the Society’s policy and despite ASH’s advocacy efforts to encourage NCAA to rescind its policy, NCAA expanded its screening policy to Division II schools in 2012 and Division III schools in 2013. ASH has been involved in the following efforts to educate policy-makers, physicians, and the public about sickle cell trait and to continue 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), ASH, and other stakeholder groups have discussed developing 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. ASH leaders continue to urge for 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 with leaders at the National Heart, Lung, and Blood Institute (NHLBI). In addition, in an effort to ensure that the Centers for Disease Control 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.
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