Ophthalmologist Michael Puente, Jr., MD, was still a resident when he heard the story of A.J. Betts, a 16-year-old boy from Des Moines, Iowa who died by suicide after enduring years of bullying because he was different. A.J. was biracial, his cleft lip gave him a slight lisp, and he was gay.
A.J. opted to become an organ donor when he obtained his driver’s license six months before he died. His heart, lungs, kidneys, and liver were donated, but his corneas were rejected because he was gay.
Since 1994, the U.S. Food and Drug Administration (FDA) and Eye Bank Association of America have banned the transplantation of corneas from men who have had sex with a man in the last five years. The policy was in response to a time when HIV testing could not detect the virus until several months after infection. But today, tests can reliably detect the virus within the first one to two weeks of infection.
“It was just shocking to me,” Dr. Puente said of A.J.’s story. “It didn’t make any sense. We have tests for HIV that are incredibly accurate. Why is this out-of-date guidance still on the books? I felt angry and sad, and then I felt guilty that my profession hadn’t spoken up on this issue.”
Dr. Puente decided he would be the one to speak up for his profession. But first, he needed data. He wanted to know if A.J.’s experience was common. He called all 65 eye banks in the United States and Canada to investigate how many potential corneal donors were disqualified over the course of one year because of federal restrictions on corneas from gay men.
Dr. Puente found that between 1,600 to 3,200 cornea donations a year are turned away due to bans on corneal donation by gay and bisexual men in the United States and Canada. His study, the first of its kind, was published in JAMA Ophthalmology in 2020.
His study also shows that there are no known cases of HIV being transmitted through a cornea, even in the 1980s and early 90s, when at least 10 people unknowingly received transplants from positive donors. The cornea is an unlikely pathway for the virus because it is the only part of a human body that has no blood supply; it gets oxygen directly through the air.
While the United States has an adequate supply of corneas to serve people who need transplants here, there is a shortage of corneas worldwide. The US exports about 25,000 corneas annually, but the worldwide demand is estimated at 12.7 million.
In addition to the data, Dr. Puente has a powerful and unstoppable ally in his quest, A.J.’s mother, Sheryl Moore, who started lobbying to change donor exclusion rules soon after he died in 2013. She has already succeeded in getting the FDA to shorten its blood donation policy. The deferral period for blood donations now stands at three months, and it may be reduced further.
Dr. Puente and Moore started an organization called Legalize Gay Eyes to advocate for shortening the 5-year deferral policy on corneas. They have brought several medical organizations along with them, including The American Academy of Ophthalmology, the American Society of Cataract and Refractive Surgery, the American Medical Association, and the Eye Bank Association of America. They have asked the FDA to review it’s 28-year-old policy based on today’s science.
Dr. Puente also worked with his Congressman, Rep. Joe Neguse (D-CO), to draft a letter to the FDA. The letter earned 52 signatures from members of the House of Representatives and the Senate. The American Academy of Ophthalmology also wrote a letter to the FDA in 2021 and continues to meet with FDA staff on this issue. This month, the American Medical Association agreed to adopt an Academy-backed resolution to update its criteria related to cornea and tissue donation involving men who has sex with men.
The FDA has agreed to review its tissue donation deferral policies but has not offered a time frame for when it will decide, stating only that the process will be data driven.
“This policy is based on what we knew in 1994, not on what we know now,” Dr. Puente said. “I’m confident when they review 28 years of science, they will update the policy.”
Nine years have passed since A.J. died, and Moore is finally able to speak of him without tears.
“He was the most extraordinary human being I’ve ever met,” Moore said of her son. “Getting the law changed so gay men can donate corneas would mean my son changed the world. When you lose a child, your greatest fear is that they will be forgotten.”
Thanks to his mom and Dr. Puente, A.J. will be remembered.