By Matt Wood
In 2006, Dale Lloyd II, a 19-year-old freshman football player at Rice University, collapsed during a conditioning workout and died the next day. His death was linked to complications from sickle cell trait, or having one of the genes that causes sickle cell disease.
At least 20 deaths of football players with sickle cell trait have been reported since 1974. As part of a settlement with Lloyd’s family in 2009, the National Collegiate Athletic Association (NCAA) agreed to screen all athletes for sickle cell trait. But does this policy make good medical sense, or does it discriminate against athletes with sickle cell trait and unnecessarily exclude them from sports? Lainie Friedman Ross, MD, PhD, the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics, recently surveyed pediatricians and sports medicine providers about the NCAA policy and found conflicting responses to these questions.
Sickle cell trait is most common among African Americans but can affect Caucasians as well, particularly those of Mediterranean and Middle Eastern origin. It can cause red blood cells to change shape and clog blood vessels, which can lead to heat illness, dehydration, kidney failure and exertional rhabdomyolysis, or breakdown of muscle tissue. Athletes and military trainees with sickle cell trait are especially at risk during intense conditioning at high altitudes or in extreme heat and humidity.
The idea behind the NCAA policy is that coaches would be able to take precautions during practices and games for athletes with sickle cell trait, but Ross said anybody is at risk for heat illness under those conditions.
“People who have sickle cell are at increased risk, but anybody can die from heat exhaustion,” she said. “This isn’t just unique to sickle cell trait. The whole point is we should be protecting all of our athletes and military personnel.”
The United States military has long studied this issue, and found that modifying training on hot, humid days for all recruits — not just those with sickle cell trait — eliminated the excess risk of death from heat illness and exertional rhabdomyolysis for those with sickle cell trait. Under normal conditions, athletes with sickle cell trait can participate with no restrictions, so by singling them out instead of enforcing rules on practice conditions for all athletes, the NCAA may be discriminating against them.
“Even if sickle cell trait doesn’t affect their performance, it affects how they get measured for their performance,” Ross said. “If we’re going to discriminate against these kids in practice, we’re going to discriminate against them in games too.”
In two separate surveys published in Pediatrics and the Clinical Journal of Sports Medicine, Ross and her colleagues asked pediatricians and sports medicine providers about the NCAA policy. More than 70 percent of both groups supported targeted screening for African American athletes in all NCAA divisions. At the same time, a majority of both groups also expressed concerns about discrimination against athletes with sickle cell trait. These answers seem to contradict each other. If providers were concerned about discrimination they wouldn’t support targeted screening versus screening all athletes, or they wouldn’t support the screening policy at all.
Although initially the NCAA recommended screening all athletes, when the policy was implemented in 2010, the NCAA required screening for only Division I athletes. The final policy also allowed athletes to opt-out of screening. Both pediatricians and sports medicine providers overwhelmingly supported the opt-out policy (75 percent of pediatricians and 88 percent of sports medicine providers), which would also seem to contradict their support for screening in the first place.
Besides the potential for unfair treatment of athletes with sickle cell trait, Ross also has concerns with the NCAA’s testing method. The official policy recommends a test called “Sickledex” which tests only for the specific sickle cell hemoglobin. However, there are a number of variants of sickle cell disease that the Sickledex test doesn’t detect. While these variants may not pose the risk of exertional heat illness, they do have implications for having a child with a sickle cell disease variant. By using the Sickledex, athletes who test negative may misunderstand their risks in the reproductive context.
“You’re taking 18- to 25-year-old athletes and you’re telling them that they’re sickle negative,” Ross said. “So later they decide to get married and have a family, and they tell their partner they’re sickle negative, not knowing that they were using a really bad test.”
There is a more sophisticated test available that detects all the sickle cell variants, but it costs more than $100 to administer, versus $10 for the Sickledex test. Ross believes this is the main reason driving the NCAA’s recommendation. “It’s very problematic to use a really bad test,” she said. “If we’re going to do a test, let’s do the right test so we give kids the proper information about their sickle cell status.”
There has been a broader push to screen athletes for other health conditions as well. In Italy, for instance, athletes are screened for heart conditions during routine wellness exams. Ross said that while such screening policies are created with the best intentions, they risk excluding thousands of kids from playing sports who could otherwise participate with no health issues.
“We have 10 million kids playing sports in the U.S. each year. The Italian data found that nine percent of the children required further diagnostic work-up, and two percent were disqualified from sports participation. That would be a huge number in the United States, she said. “It’s estimated that it would cost around $2 billion for this type of screening here, which translates into $330,000 to detect a single athlete at risk for sudden cardiac death and $3.5 million to prevent one death.”
The difficult part is putting those numbers into perspective, but Ross said we need to think hard about how and why we screen athletes. “Any death in a young, healthy person is a total tragedy. I’m not trying to minimize it,” Ross said. “But I also have to think on the flipside. From a medical perspective it’s not wrong to screen people, but it’s the unintended consequences of the policy that are the problem.”
Koopmans, J., Cox, L., Benjamin, H., Clayton, E., & Ross, L. (2011). Sickle Cell Trait Screening in Athletes: Pediatricians’ Attitudes and Concerns PEDIATRICS DOI: 10.1542/peds.2011-0187
Acharya, K., Benjamin, H., Clayton, E., & Ross, L. (2011). Attitudes and Beliefs of Sports Medicine Providers to Sickle Cell Trait Screening of Student Athletes Clinical Journal of Sport Medicine, 21 (6), 480-485 DOI: 10.1097/JSM.0b013e31822e8634