Sheryl J. Moore has been advocating for the past decade to update the rules about gay men donating tissue since she lost her eldest son, Alexander “AJ” Betts Jr., to suicide in 2013 and his corneas went to waste. (KC McGinnis for KFF Health News)
The federal government in 2020 and 2023 changed who it said could safely donate organs and blood, reducing the restrictions on men who have had sex with another man.
But the FDA’s restrictions on donated tissue, a catchall term encompassing everything from a person’s eyes to their skin and ligaments, remain in place. Advocates, lawmakers, and groups focused on removing barriers to cornea donations, in particular, said they are frustrated the FDA hasn’t heeded their calls. They want to align the guidelines for tissue donated by gay and bisexual men with those that apply to the rest of the human body.
Such groups have been asking the FDA for years to reduce the deferral period from five years to 90 days, meaning a man who has had sex with another man would be able to donate tissue as long as such sex didn’t occur within three months of his death.
One of the loudest voices on lightening the restrictions is Sheryl J. Moore, who has been an advocate since her 16-year-old son’s death in 2013. Alexander “AJ” Betts Jr.’s internal organs were successfully donated to seven people, but his eyes were rejected because of a single question asked by the donor network: “Is AJ gay?”
Moore and a Colorado doctor named Michael Puente Jr. started a campaign called “Legalize Gay Eyes” and together got the attention of national eye groups and lawmakers.
Puente, a pediatric ophthalmologist with the University of Colorado School of Medicine and Children’s Hospital Colorado, said the current patchwork of donor guidelines is nonsensical considering advancements in the ability to test potential donors for HIV.
“A gay man can donate their entire heart for transplant, but they cannot donate just the heart valve,” said Puente, who is gay. “It’s essentially a categorical ban.”
The justification for these policies, set 30 years ago as a means of preventing HIV transmission, has been undercut by the knowledge gained through scientific progress. Now, they are unnecessary and discriminatory in that they focus on specific groups of people rather than on specific behaviors known to heighten HIV risk, according to those who advocate for changing them.
Since 2022, the FDA’s Center for Biologics Evaluation and Research has put changes to the tissue guidance on its agenda but has yet to act on them.
“It is simply unacceptable,” Rep. Joe Neguse, D-Colorado, said in a statement. He was one of dozens of Congress members who signed a letter in 2021 that said the current deferral policies perpetuate stigma against gay men and should be based on individualized risk assessments instead.
“FDA policy should be derived from the best available science, not historic bias and prejudice,” the letter read.
The FDA said in a statement to KFF Health News that, “while the absolute risk transmission of HIV due to ophthalmic surgical procedures appears to be remote, there are still relative risks.”
The agency routinely reviews donor screening and testing “to determine what changes, if any, are appropriate based on technological and evolving scientific knowledge,” the statement said. The FDA provided a similar response to Neguse in 2022.
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