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Five years ago, a promising young college athlete stunned the sports world when he collapsed and died after a routine football practice.
In the wake of the tragedy, the athlete’s parents filed a wrongful death lawsuit on the grounds that their son, Dale Lloyd II, had not been screened for the sickle cell trait. If Lloyd, a carrier of the sickle cell trait, had been tested, the parents argued in the high-profile case, he and his coaches would have been able to take certain precautions to prevent his death.
The case led to a settlement in which the National Collegiate Athletic Association (NCAA) agreed to implement a new policy to screen all Division I student athletes for the sickle cell trait.
Adopted last year, the policy—one of the largest mandated genetic screening programs in the country—stirred controversy from the start. Proponents said it would save lives. But critics argued that it was implemented for legal, rather than scientific, reasons and raised questions about its scope, effectiveness, cost and the potential for discrimination.
A trio of Robert Wood Johnson Foundation (RWJF) Clinical Scholars addressed these questions in a new study in Health Services Research. It is part of a special issue on “Bridging the Gap Between Research and Health Policy” that features research articles from current and former RWJF Clinical Scholars. The print edition will be published in February 2012.
In their study, the authors found that the NCAA’s new policy will identify more than 2,000 athletes with the sickle cell trait—most of whom would be African American—and could save roughly one life a year. The authors are careful to note that the screening program alone will not save lives; preventive measures must be taken to prevent sudden death related to over-exertion and the sickle cell trait. “Screening is just the first step,” says Beth A. Tarini, MD, MS, lead author of the study and assistant professor in the department of pediatrics and communicable diseases at the University of Michigan. “In addition to educating athletes and staff, precautionary measures need to be strictly enforced.”
The costs of screening are high. To prevent one death, screening costs alone would amount to between $1.4 and $3 million, Tarini and her coauthors found. Critics also fear that screening could lead to discrimination against athletes identified as carriers of the sickle cell trait, as happened during community and public health screening programs in earlier decades.
For the study, Tarini, a Clinical Scholar from 2004-2006, and her co-authors analyzed NCAA reports, population-based sickle cell trait prevalence estimates, and published risks for sickle cell trait exercise-related sudden deaths. They used these reports to estimate the number of Division I student athletes who carried the sickle cell trait as well as the number of potentially preventable deaths among the population.
The authors also analyzed data about Division II or Division III student athletes and found that roughly the same amount of sickle-cell trait and exercise-related sudden deaths could be prevented in those populations if screening and preventive measures were taken. Tarini’s co-authors are M. Alison Brooks, MD, a pediatric sports medicine physician at the University of Wisconsin, and David G. Bundy, MD, an assistant professor of pediatrics at Johns Hopkins University with expertise in sickle cell disease. Brooks was a Clinical Scholar from 2004-2006, and Bundy, a Robert Wood Johnson Foundation Physician Faculty Scholar (2009-2012), was a Clinical Scholar from 2003-2005.
The U.S. military first observed the link between sickle cell trait and exercise-related sudden death in the 1970s. But instead of implementing a mandatory screening policy, it implemented a preventative program that applied to all recruits. Precautions included monitoring body temperatures and ensuring adequate fluid intake. The approach was successful; there were no subsequent sudden deaths in recruits with the sickle cell trait, the authors write.
A universal approach like the one adopted by the military could have a similarly salutary effect on the civilian world, Tarini and her co-authors write. Universal prevention efforts would be more cost-effective than screening tests because prevention resources are already in place on most campuses, Brooks says. A universal approach, she adds, would also eliminate the potential for discrimination. Brooks and Tarini also question why the policy doesn’t apply to Division II and III student athletes. “If we are going to test for the sickle cell trait, then why not test everyone?” Tarini asks. “And if we’re going to test, we need to make sure that colleges and universities enforce preventive measures. Screening alone could give us a false sense of security.”
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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