By Ronald G. Christian, M.S., (Ph.D. candidate, University of Kansas), Baker University (Kansas), and Lee E. Green, J.D., Baker University (Kansas)
In 2010, as part of the terms of a lawsuit settlement with the family of Dale Lloyd II, a Rice University football player who suffered from undiagnosed Sickle Cell Trait and who died in 2006 a day after collapsing following a workout, the NCAA instituted mandatory screening of all Division I college athletes for SCT unless they provide prior test results or sign a waiver declining the test. Mandatory SCT testing for all Division II athletes began in 2012 and for all Division III athletes in 2013.
Sickle Cell Trait is an inherited blood disorder that in rare, extreme conditions accompanied by intense physical activity, severe dehydration, and high temperatures, leads to serious illness and death. The March 11, 2013 issue of The American Journal of Sports Medicine featured an article summarizing 20 years of data from the National Center for Catastrophic Sports Injury Research that found 243 deaths among American college and high school football players, with 11 of those occurring among players (all African Americans) with SCT. Since 1973, 19 athlete deaths have been linked to SCT, including 17 football players (Harmon, Drezner, Klossner, & Asif, 2012). An estimated 3 million Americans, including 1 in 12 African-Americans, carry SCT. Many live asymptomatically.
The issue of SCT screening is a highly controversial one, sparking not only health concerns, but also a host of legal issues. In September 2013, the parents of Jack Hill, Jr., sued Slippery Rock University, an NCAA Division II institution, and the NCAA after their son collapsed and died during an intense workout in 2011. Hill, Jr., died just one year after the NCAA Division I mandate for SCT screening went into effect, and just one year before SCT testing was required for NCAA II institutions.
Some medical associations, among them the American Society of Hematology and the Sickle Cell Disease Association of America, oppose mandatory SCT testing because of concerns regarding the lack of peer-reviewed scientific evidence that SCT screening will actually save lives. There are also concerns regarding potentially discriminatory use of the genetic information revealed through SCT testing, including possible violations of the Genetic Information Nondiscrimination Act of 2008, HIPAA, and FERPA. Other organizations, including the American Medical Society for Sports Medicine, the American College of Sports Medicine, the American Academy of Pediatrics, the American College of Emergency Physicians, and the National Academy of Sports Medicine support mandatory SCT screening for athletes as an important component of a three-pronged approach to preventing SCT-related deaths (j knowledge, k education, l precautions).
The American Society of Hematology released a statement in January 2012 asserting that “implementation of universal preventive interventions will render screening unnecessary and better protect all athletes from exertion-related illness and death,” (ASH, 2012). According to ASH, SCT screening attributes risk imprecisely, obscures consideration of other risk factors, fails to incorporate appropriate counseling, and could lead to racial discrimination. ASH also noted that the extremely small number of deaths in a highly prevalent carrier state implies other factors play a role.
Recommended preventive interventions by ASH include 1) monitoring heat acclimatization and work-rest cycles based on the training environment, 2) implementing guidelines for hydration, and 3) maintaining staff preparedness for early and rapid detection, and treatment of student-athletes. Many NCAA recommendations are consistent with ASH, requiring progressive acclimatization, appropriate medical coverage, and development and practice of an emergency action plan (NCAA Sports Medicine, 2013). The NCAA also requires student-athletes to complete a medical history questionnaire prior to competition.
The perceived fear of discrimination or being “treated differently” once SCT status is known may be a valid concern in the minds of student-athletes. In 2001, Florida State University officials refused to provide medical clearance for Devard Darling, a wide receiver and SCT carrier, after his twin brother Devaughn died at age 18 from SCT complications during an off-season workout with the Seminoles. Devard went on to play for Washington State University for two seasons and enjoyed a five-year NFL career.
Several scholars have examined the issue from a research perspective. Study results among 375 NCAA I, II, III, and NAIA institutions (Jung, Selmon, Lett, & Petrella, 2011) published in the Medicine & Science in Sports & Exercise Journal revealed that 57% of athletic departments counsel student-athletes about SCT. Data from a pilot survey among athletic sports medicine professionals from 40 selected NCAA I, II, and III institutions (Christian & Green, 2014) produced some interesting findings as well. Consistent with the discrimination concerns shared by many professional medical associations, this survey revealed that 56% of institutions had 100 or more student-athletes sign a waiver declining the SCT test. Although this finding warrants further inquiry, the initial results suggest that student-athletes may have some concerns about SCT screening, a lack of understanding about the importance of SCT screening, or a combination of the two.
Research from the aforementioned studies produced consistent results regarding education about SCT, with 59% compliance (2014) and 57% compliance (2011), respectively, when it comes to counseling student-athletes about the condition. The studies also revealed an upward trend in monitoring work-rest cycles (64% in 2014) and modifying workouts (40% in 2011), lending support to the position held by many medical associations advocating for prevention measures to address exertion- and heat-related illness and death in student-athletes.
One effective measure for SCT screening employed by some institutions involves obtaining a release from the athlete, parent, or guardian to obtain medical records from a state agency. At-birth SCT screening has been required in all states since 2006, but many states have been screening all newborns much longer, including California (1990) and Florida (1998). Although many states may lack a protocol for disseminating results directly to SCT carriers and/or parents of SCT carriers (Zarda, 2010), institutions can obtain SCT status from state agencies with a release from the athlete, parent, or guardian.
Further examination of the arguments on both sides of this important safety and legal issue may provide sound recommendations for sports organizations and educational institutions regarding the future development and implementation of SCT protocols.
References
American Society of Hematology (2014). Statement on screening for sickle cell trait and athletic participation. Retrieved January 21, 2014 from http://www.hematology.org/Advocacy/Policy-Statements/7704.aspx
Associated Press. (September 9, 2013). NCAA, Div. II school sued over sickle cell death. USA Today. Retrieved Sept. 10, 2013 from http://usatoday30.usatoday.com/sports/college/2010-06-30-sickle-cell-ncaa-cover_N.htm
Harmon, K.G., Drezner, J.A., Klossner, D., Asif, I.M. (2012). Sickle cell trait associated with a RR of death of 37 times in NCAA football athletes: a database with 2 million athlete-years as the denominator. British Journal of Sports Medicine, 46, 325-330.
Jung, A.P., Selmon, P.B., Lett, J.L., Petrella, J.K. (2011). A survey of sickle cell trait screening in NCAA and NAIA athletic programs. Medicine & Science in Sports & Exercise, 43(5), 916.
National Athletic Trainers Association (NATA). (2007). The National Athletic Trainers’ Association (Nata) Releases “Sickle Cell Trait And The Athlete” Consensus Statement. Retrieved January 25, 2014 from http://www.nata.org/nr062107
NCAA Sports Medicine Handbook. (2013-14). Retrieved January 20, 2014 from http://www.ncaapublications.com/p-4328-2013-14-ncaa-sports-medicine-handbook.aspx
Zarda, B. (2010). Lawsuit prompts NCAA to screen athletes for sickle cell. USA Today. Retrieved January 14, 2014 from http://usatoday30.usatoday.com/sports/college/2010-06-30-sickle-cell-ncaa-cover_N.htm
Court Cases:
Hill v. NCAA and Slippery Rock University (Filed 2013)
Plancher v. University of Central Florida (Florida Court of Appeals 2013)
Richardson v. Bowling Green State University (Ohio Court of Appeals 2011)
Abram v. NCAA and University of Mississippi (Settled 2011)
Lloyd v. NCAA and Rice University (Settled 2010)
Livingston v. DeSoto Independent School District (U.S. Fifth Circuit Court of Appeals 2006)
Darling v. Florida State University (Settled 2004)
Statutes:
The Genetic Information Nondiscrimination Act of 2008 (Pub.L. 110—233, 122 Stat. 881, enacted May 21, 2008)
The Health Insurance Portability & Accountability Act of 1996 (Pub.L. 104—191, 110 Stat. 1936, enacted August 21, 1996)
The Family Educational Rights & Privacy Act of 1974 (20 U.S.C. § 1232g, enacted August 21, 1974)
Policies:
NCAA Mandatory SCT Screening Requirements for Division I, II, and III
NFHS Sports Medicine Handbook Policies
Position Statements:
The Inter-Association 2012 Task Force for Preventing Sudden Death in Collegiate Conditioning Sessions: Best Practices Recommendations —SCT Section [Endorsed by numerous doctors, medical associations, and sports organizations]
The Inter-Association 2013 Task Force for Preventing Sudden Death in Secondary School Athletics Programs: Best Practices Recommendations — SCT Section [Endorsed by numerous doctors, medical associations, and sports organizations]
The American College of Sports Medicine and NCAA Joint Statement: Sickle Cell Trait & Exercise (August 2013)
The American Journal of Sports Medicine March 2013 Study & Recommendations: A 20- Year of Data On Deaths Among College & High School Football Players [Data from the National Center for Catastrophic Sports Injury Research]
The American Society of Hematology: Sickle Cell Trait and Sports — Is the NCAA a Hematologist? (May 2013)
Screening U.S. College Athletes for Their Sickle Cell Disease Carrier Status — A Position Statement by the Secretary of the U.S. Department of Health & Human Services (October 2010)
Ron Christian is an assistant professor at Baker University (Kansas) where he teaches courses in sports administration, including sports marketing, sports leadership, sports management, sports law, and facility and event management. He completed his master’s degree at the University of Northern Colorado and is pursuing a Ph.D. at the University of Kansas.
Lee Green is an attorney and a professor at Baker University (Kansas) where since 1986 he has taught courses in sports law, constitutional law, and business law. He has written three books on sports law, more than 50 articles on sports law, and he regularly presents sports law seminars and workshops for the NCAA, NACDA, the NAIA, the NFHS, and state athletic associations and athletic director associations around the country.
