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ASH opposes mandatory sickle cell trait screening of athletes
The American Society of Hematology issued a policy statement today opposing mandatory screening of athletes for sickle cell trait, instead recommending athletic programs implement universal interventions to prevent or reduce exertion-related injuries and death.
The statement — which concluded that scientific evidence does not justify mandatory screening before athletic participation — contradicts a policy the NCAA adopted in 2010 that requires all incoming student-athletes at Division I institutions to undergo sickle cell testing.
The NCAA implemented its policy after a college football player who had sickle cell trait died during preseason training, leading to a lawsuit against the association. The policy includes an opt-out clause for student-athletes who provide results of a prior screening test or agree to sign a waiver absolving their institution and the NCAA from responsibility.
“Screening alone is an extremely limited approach intended to protect the liability of the NCAA and the athlete’s university, not the student athlete,” Janis L. Abkowitz, MD, head of the division of hematology at the University of Washington School of Medicine and president-elect of ASH, said in a press release.
“Sickle cell trait is not the only condition that can lead to death from athletic overexertion, underscoring the need for NCAA to require universal preventive interventions in its training programs that will better protect everyone.”
Sickle cell trait is an inherited blood disorder that affects millions of Americans, including about 8% of African Americans, according to ASH. Those with sickle cell trait are carriers of one of the two defective globin genes associated with sickle cell disease, which causes production of abnormal hemoglobin.
Unlike those with sickle cell disease, most people with sickle cell trait do not experience serious health problems. In rare cases, however, intense physical activity and extreme dehydration can trigger severe physical distress or death.
ASH’s policy statement cites a lack of “well-controlled, hypothesis-driven prospective studies” that evaluate a possible connection between sickle cell trait and exertional collapse.
“Most cases reported to date are autopsy descriptions or case reports in which other potential contributors are not fully investigated,” the statement said. “The extremely small number of deaths in a highly prevalent carrier state implies that other genetic or environmental factors play a role. Rhabdomyolysis and exertional collapse also occur in individuals without sickle cell trait.”
Implementation of universal preventive interventions, such as those used by the Army since 1996 for recruits in training, will better protect athletes and render sickle cell trait screening unnecessary, according to the policy statement. The interventions include training staff members to detect and treat heat illness early, implementing hydration guidelines, and monitoring heat acclimatization and work-rest cycles.
The policy statement also “serves as a call for additional research in this area that will benefit those with sickle cell trait, help inform public policy and save lives,” Abkowitz said.
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As a provider who cares for children and adults with sickle cell disease, I was delighted that the American Society of Hematology (ASH) has taken the responsibility to address the recent NCAA policy regarding mandatory documentation of sickle cell trait status prior to participation in Division I athletics. ASH is the respected voice of hematologists worldwide. It is refreshing, therefore, that they publicly opposed the NCAA policy that many sickle cell experts find flawed and troubling. We were disturbed at the potential for stigmatization and distribution of misinformation that could harm these athletes without any benefit. This is alarming considering that 8% to 10% of African Americans are trait carriers. It affects other racial groups and has a significant prevalence around the globe, making the NCAA policy one that can unnecessarily impact many athletes. The ASH policy appropriately addresses the rare instances when sickle cell trait status is problematic and recommends interventions that should be employed for all sport players. I think the voice of the ASH experts is critical in protecting our young athletes. I hope this allows for venues between NCAA and ASH to engage in positive interactions to modify their stance.
– Alecia Nero, MD
Assistant professor of internal medicine and pediatrics
University of Texas Southwestern Medical Center
Disclosure: Dr. Nero reports no relevant financial disclosures.
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The issue of screening for sickle cell trait and disease has been contentious since the nationwide awakening about the disease in the 1970s. Identification of individuals with the disease by such procedures has been very useful, as shown by the marked reduction in mortality in early childhood provided by newborn screening. It is unlikely — but not impossible — that athletes will have clinical disease. The effects of the carrier state are much less serious but not entirely inconsequential. Athletic directors and coaches have known for years how to prevent the consequences of overexertion in the heat and yet deaths occur every year. Although I don’t think mandatory testing by the athletic departments is the answer, I do think that individuals at risk involved in strenuous sports should know whether they are carriers of the sickle cell trait through testing in a setting that keeps the information private and is accompanied by education about the result, both general and specific to their participation in sports. That individual can then make better decisions about their conduct.
– Wendell Rosse, MD
HemOnc Today Editorial Board member
Disclosure: Dr. Rosse reports no relevant financial disclosures.
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