In 2006, Dale Lloyd Jr., a 19-year-old freshman at Rice University who played defensive back, died one day after collapsing during football practice. It is an event that I remember well. My son was a sophomore at Rice at that time, and he was a member of the MOB (Marching Owl Band) that played in tribute.
At post-mortem examination, it was discovered that Dale had sickle cell trait (SCT). A wrongful death lawsuit was brought against Rice University and the sports conference to which the University belonged, and as part of the settlement and the aftermath of that tragic event, the National Collegiate Athletic Association (NCAA) began, in 2010, the practice of screening all Division I athletes for SCT. In 2012, the policy was extended to include Division II athletes, and in 2013 Division III athletes were also included. Now, to participate in NCAA sanctioned athletics, a student must have a sickle cell test and report the results to his or her coach and trainer, or he or she can decline the test and sign a legal document that releases his or her respective university from liability.
ASH felt that this litigation-motivated response was medically and ethically inappropriate. We hosted a workshop in June 2011 that included Society members with clinical and research expertise in hemoglobin biology, SCT, and sickle cell disease. With the support of groups such as the Sickle Cell Disease Association of America, American Society of Pediatric Hematology-Oncology, the CDC, and the American Public Health Association, we issued a policy statement and then reached out to the NCAA to engage in a dialogue about their SCT screening policy.
What are the facts? SCT is common. One in 12 African-Americans (~8%) has SCT. Based on this estimate, perhaps 4 million people in the United States carry the trait (with about 300 million worldwide being affected). Although exercise-associated death in individuals with SCT is extremely rare, there are epidemiologic, but not cause-effect, data that suggest a link. A landmark study showed a 37-fold greater relative risk of sudden death during basic training in army recruits with SCT.1 Confronted with this data, the U.S. Army responded, not by screening recruits for SCT, but by implementing changes in hydration and rest rules designed to protect all inductees from the adverse effects of overexertion and hyperthermia.
A recent study surveyed newspaper reports and incident records that covered 2 million NCAA student athlete-years and identified 273 cases of sudden death.2 Only five (2%) of these were associated with SCT. All five SCT-related deaths occurred in football players, none occurred during games, and most occurred during preseason conditioning practices and thus involved less well-conditioned student athletes, akin to the less well-conditioned soldiers with SCT who died during basic military training. ASH’s statement encourages research into the effects of SCT on exercise tolerance and urges the NCAA to implement universal precautions to reduce exercise-induced injury, such as those implemented by the Army. Research topics include studying whether rhabdomyolysis is the inciting event in the catastrophic cascade that can lead to multi-organ failure and death, whether rhabdomyolysis is due to muscle hypoxia and sickling, and whether a second genetic risk factor with overlapping prevalence is also required.
What are ASH’s specific concerns? First, the NCAA policy attributes risk inappropriately. Student athletes testing negative for SCT may have a false sense of security and ignore or not recognize more prevalent risks such as asthma and long QT interval. Student athletes testing positive for SCT may falsely assume that their risk is alarmingly high because only SCT testing is mandated. That SCT testing is a prerequisite to play all college sports, including low-intensity sports such as bowling and golf, reinforces this inaccurate message of risk severity and may falsely frighten the broader public. Anecdotally, ASH members described African-Americans with SCT, diabetes, and obesity who abandoned their exercise programs because they feared that they might die from overexertion.
Second, although the NCAA mandates SCT testing, neither counseling nor intervention is required. The NCAA screening program thus does not conform to ethical standards, such as those endorsed by the World Health Organization. Comprehensive and accurate counseling is especially important when screening for a genetic trait because having the trait is immutable. ASH believes that testing for SCT, discussion of its implications, and decisions about sharing this information, like any other health issue, should involve the athlete and his or her family and physician, not trainer or coach.
What happened next? Recognizing the challenges from the culture of college sport, its focus on toughness, and the huge financial imperative to win, ASH calmly presented an evidenced-based view at a roundtable cosponsored by the NCAA and American College of Sports Medicine in February 2012. Although the NCAA recently extended SCT testing to include Division III athletes, the debate was vigorous and the vote relatively close. Gratifyingly, the NCAA strengthened rules limiting the duration and intensity of preseason football practices, a step toward universal precautions. My direct interactions with the new (first) NCCA Chief Medical Officer have been positive and transparent.
The CDC, with ASH co-sponsorship, is developing and will broadly distribute educational materials that should improve the public’s understanding of SCT and sickle cell disease. Because of ASH’s advocacy and especially that of Alexis Thompson, MD, the Army and NIH may support new studies of the health consequences of SCT in soldiers. Military records are not sealed as part of lawsuits, so accurate and complete medical information should be available for investigation into the causes of exertional injury and death.
Because ASH’s response to a misguided NCAA policy may improve public awareness and health, this issue and our reaction should serve as a paradigm for how we can identify a problem, gather expert input broadly from our membership, develop a thoughtful plan, establish strategic partnerships, and act. Striving for constructive interactions, not fights, recognizing the power of persistence, and setting long-range goals are the keys to effecting policy successfully. When ASH takes the initiative, we are indeed impactful.
As an ASH leader, I participate in many activities that differ vastly from those I engage in as an academic physician, scientist, and administrator. The interaction with the NCAA described above is one example. This was not only an intriguing foray into the expectations and realities of college sports, but also an opportunity to help define ASH’s mission and to observe the strength of the remarkable intellectual resources that the Society has available in the form of its dedicated membership and staff.
