As a near universal rule, the NCAA makes bad decisions. So when I heard that the NCAA had recently made a controversial decision pertaining to student-athlete health, a decision that incited the ire of the American Society of Hematology, I reflexively assumed the NCAA had once again screwed up. Now I'm not so sure.
Here's what went down. Earlier this year, NCAA delegates voted 254 to 200 in favor of a measure to require sickle cell genetic screening of all student athletes by the 2014-2015 academic year. As of 2008, all fifty states mandate newborn screening for sickle cell disease but this wasn't always the case, which means that some people may not know they have the mutation. This is important because a number of new treatment options have turned the disease from a death sentence (a decade ago, patients died in their forties) into a manageable, chronic condition like diabetes with an almost-normal life expectancy. Given the remarkable therapies available, you'd certainly want your newborn child screened for sickle cell disease, so why is the NCAA's decision to screen athletes controversial?2
It turns out the NCAA is not the first group to attempt wide, publicish screening. In the 1970s, government agencies, advocacy groups, and community-based organizations established voluntary sickle cell screening programs—and they were a disaster. They lacked appropriate counseling or education for those who tested positive, and often conflated sickle cell disease with sickle cell trait (largely harmless); they also disseminated misinformation about the disease i general, and made it hugely difficult for many to get health insurance. Ultimately, they were abandoned, but not before causing far more harm than good.
Drawing on those lessons learned in the '70s, the American Society of Hematology suggests that the NCAA's new sickle cell screening policy is "medically groundless—perhaps even dangerous—and is focused more on protecting the NCAA from legal liability than protecting the health of student athletes."
Indeed, the NCAA only decided to implement this policy after the death of Dale Lloyd II, a 19-year-old freshman at Rice University who died during football practice in 2006. Lloyd's family took legal action in the hope of preventing other deaths, and the NCAA seems to have cooperated. But it's unclear if this massive initiative is actually backed up by science or statistics. A recent study that covered 2 million NCAA student athlete-years identified just 273 cases of sudden death and only five of these were associated with the sickle cell mutation. So while the death of Dale Lloyd II was shocking, it's important to remember that it was an almost inconceivably rare event.
Rather than using a sickle cell screen to identify athletes, the American Society of Hematology suggests a different plan that focuses on preventive interventions, similar to those used by the U.S. Army.3And as it turns out, the American Society of Hematology is not alone in its concern about the sickle cell initiative. An op-ed in the New England Journal of Medicine suggests that the new screening plan raises a number of troubling questions that the NCAA may not be prepared to answer:
Will the NCAA assist student athletes and their parents in making informed decisions regarding testing and in understanding the implications of the test results? Will the first-line test, hemoglobin solubility, be followed by a second test to eliminate false positives? What role will primary care providers play in screening and counseling? How will knowledge of their carrier status affect student athletes and their families? How will the athletic program and the institution protect the privacy of athletes who test positive?
Many will reasonably view the NCAA's new screening policy as a public relations stunt aimed to appease a grieving family. And the fact that student-athletes can opt out of testing if they provide a waiver releasing their school and the university from liability appears to be further evidence that the NCAA has implemented this program simply to cover its ass. That may be true, but if it is willing to spend the money to perform this sickle cell screen correctly—and that will require expensive testing, counseling, and potentially medical care—they may actually end up on the right side of this controversial decision. Student-athletes who are unaware of their medical condition will be able to make more informed decisions about treatment options and may be more responsive to warning signs that develop on the playing field.
But if recent history is any indication, we should all be more than a bit skeptical. The NCAA mandates sickle cell testing, yet neither counseling nor intervention is required which means the screening program does not conform to established ethical standards outlined by numerous physician groups, including the World Health Organization. The concern over the genetic testing of college athletes is not an example of doctors sticking their heads in sand, essentially saying, "We don't want to know." Rather, it's a stern message to the NCAA: Do this the right way, or don't do it at all.
1 Sickle cell disease is a blood disorder that decreases the flexibility of red blood cells as they travel through blood vessels and can lead to anemia, priapism (the excruciating erection lasting more than four hours), and a terrifying, life-threatening condition called sickle cell crisis where deformed, sickled cells prevent the flow of blood to starving tissues. In the United States, sickle cell disease occurs in roughly 1 in 5000 people and is about ten times more common in African Americans.
2 Some patients don't develop symptoms until they are in their twenties.
3 These recommendations include: 1) Environment-based work-rest cycles, 2) Heat acclimation monitoring, 3) Guidelines for hydration, and 4) Rapid detection of and treatment for heat illness.
Matt McCarthy is board-certified in internal medicine. You can follow him on Twitter here.