After suicide, gay teen’s eye donation rejected

Sheryl Moore’s son lay on the bed before her. Soon, she knew, her 16-year-old boy would be taken off life support — another life lost to bullying.

Alexander “AJ” Betts Jr. attempted suicide in July 2013, the Des Moines Register reported at the time. He died shortly thereafter. Betts’s mother said he had been outed as gay about a year and half before his death. His friends told KCCI that schoolmates constantly made fun of him, ridiculing him for being gay, for being half African American, and for his cleft lip.

“He’s different. He doesn’t add up to what they’re used to,” Noah Lahmann, the teen’s best friend, told the news station.

Before he died, Betts had a request: Donate my organs. A 14-year-old boy received Betts’s heart, according to a letter Moore received, but she said his eyes were rejected.

A Food and Drug Administration’s guidance for donor eligibility says men who have had sex with men in the past five years “should” be ruled as “ineligible” for donating certain tissues, labeling their behavior a “risk factor.”

“My initial feeling was just very angry because I couldn’t understand why my 16-year-old son’s eyes couldn’t be donated just because he was gay,” Moore said, according to KCCI.

The FDA’s guidance reflects its ban on blood from men who have sex with men. That policy is a by-product of the AIDS crisis that ripped through the gay men’s community decades ago.

The FDA explains its much harder line regarding blood as such: Men who have had sex with men “at any time since 1977 (the beginning of the AIDS epidemic in the United States) are currently deferred as blood donors” because “a history of male-to-male sex is associated with an increased risk for exposure to and transmission of certain infectious diseases, including HIV.”

Critics have long called the policy discriminatory, but the FDA says it’s necessary: “FDA’s deferral policy is based on the documented increased risk of certain transfusion transmissible infections, such as HIV, associated with male-to-male sex and is not based on any judgment concerning the donor’s sexual orientation.”

In the Journal of the American Medical Association, Glenn Cohen, a bioethics law professor at the Harvard Law School, wrote that the United States should repeal the rules about blood. “We think it’s time for the FDA to take a serious look at this policy, because it’s out of step with peer countries, it’s out of step with modern medicine, it’s out of step with public opinion, and we feel it may be legally problematic,” he told CBS. 

Cohen notes some contradictions in the FDA blood ban: Men who have sex with HIV-positive women or sex workers are banned for only a year.

Last summer, the American Medical Association voted to end the ban. According to Time magazine, William Kobler, a board member for the the association, said in a statement, “The lifetime ban on blood donation for men who have sex with men is discriminatory and not based on sound science.”

In an e-mail to Time, a spokesman for the FDA wrote, “Although scientific evidence has not yet demonstrated that blood donated by [men who have sex with men] or a subgroup of these potential donors does not have a substantially increased rate of HIV infection compared to currently accepted blood donors, the FDA remains willing to consider new approaches to donor screening and testing.” 

Rules, guidelines and recommendations governing organ and tissue donation are not as clear as the FDA’s ban on blood. The nonprofit organization United Network for Organ Sharing (UNOS) has a contract to facilitate organ procurement and transplants in United States. That contract covers “specified solid organs” such as hearts, livers, lungs and kidneys, but not eyes, according to the Centers for Disease Control and Prevention. On top of that, it adds, “Technically, all UNOS policies are voluntary.”

In Betts’s case, his liver, lungs, kidneys and heart all found recipients. Unlike blood, as long as a recipient gives consent to any associated potential risks (such as HIV transmission) after counseling, certain organs can be donated. But because his mother could not confirm to the donor network that her son hadn’t been sexually active in the five years before his death, Betts’s eyes were rejected.

“This is archaic,” Moore told KCCI. “And it is just silly that people wouldn’t get the life-saving assistance they need because of regulations that are 30 years old.”