Federal regulations prohibit gay and bisexual men from donating tissues, such as corneas, ligaments and blood vessels.
In 2020 and 2023, the federal government replaced who can safely donate organs and blood, removing restrictions on men who have had sex with men.
But the FDA’s restrictions on tissue donation, an umbrella term that encompasses everything from a person’s eyes to their skin and ligaments, remain in place. Advocates, lawmakers, and teams fighting to remove barriers to corneal donation, in particular, have expressed frustration that the FDA has ignored their calls. They need to align the rules for tissues donated through gay and bisexual men with those that apply to the rest of the human body.
These groups have been calling on the FDA for years to reduce the deferral period from five years to 90 days, meaning that a man who has had sex with a man can only donate tissue as long as those sex didn’t take place within three months. his death.
One of the loudest voices in favor of easing restrictions is Sheryl J. Moore, an activist since the death of her 16-year-old son in 2013. Alexander “AJ” Betts Jr. ‘s internal organs were effectively donated to seven people, but his eyes were rejected because a bachelor asked through the donor network, “Is AJ gay?”
Moore and a Colorado doctor named Michael Puente Jr. introduced a crusade called “Legalize Gay Eyes” and in combination attracted the attention of national vision coverage teams and lawmakers.
Puente, a pediatric ophthalmologist at the University of Colorado School of Medicine and Children’s Hospital Colorado, said the patchwork of rules for donors is absurd given the advances in the skill of potential donors for HIV.
“A gay man can donate his entire center for a transplant, but he can’t just donate the central valve,” said Puente, who is gay. “This is necessarily a categorical ban. “
The rationale for such policies, established 30 years ago as a means of preventing HIV transmission, has been undermined by wisdom gained through clinical progress. They are now unnecessary and discriminatory because they focus on specific groups of other people than on behaviors known for construction. increase the risk of contracting HIV, according to those who advocate for HIV conversion.
Since 2022, the FDA’s Center for Biologics Evaluation and Research has included adjustments to tissue targeting in its agenda, but has still acted on them.
“This is simply unacceptable,” Rep. Joe Neguse (D-Colo. ) said in a statement. He was one of dozens of congressmen who signed a letter in 2021 arguing that existing exclusionary policies perpetuate the opposite stigma of gay men and instead rely on individualized threat assessments.
“FDA policy will have to be derived from the most productive science available, not from long-standing biases and prejudices,” the letter reads.
The FDA said in a statement to KFF Health News that, “although the absolute threat of HIV transmission through ophthalmic surgeries appears low, relative threats still exist. “
The firm periodically reviews donor tests and examinations “to determine what changes, if any, are appropriate based on evolving technological and clinical knowledge,” he said. The FDA provided a similar reaction to Neguse in 2022.
In 2015, the FDA eliminated a policy called a “blood ban,” which prohibited gay and bisexual men from donating blood, before replacing it in 2023 with a policy that treats all potential donors equally. Anyone who has had anal sex in more than 3 months and has a new sexual spouse or their sexual spouses cannot donate. An FDA study found that although men who have sex with men make up the maximum of new HIV diagnoses in the country, one questionnaire was enough to identify low-risk donors well compared to high-risk donors.
The U. S. Public Health Service (NHS) The U. S. Food and Drug Administration adjusted the rules for organ donation in 2020. There is nothing stopping sexually active gay men from donating their organs, however, if they have had sex with another man in the last 30 days – as opposed to a year earlier – the patient agrees to receive the organ they may or may not settle for it.
But Puente said gay men like him can’t donate their corneas unless they’ve been single for five years before they die.
It found that in a single year, at least 360 people were rejected as cornea donors because they were men who had had sex with men in the past five years, or in the past year in the case of Canadian donors.
Corneas are transparent domes that protect the eyes from the outside world. They have the appearance and consistency of a clear jellyfish, and transplanting them can repair a person’s eyesight. They do not involve blood or any other physical fluids that can transmit HIV. Scientists suspect this is why there are no known cases of patients contracting HIV through corneal transplants, even if the corneas came from organ donors who inflamed the recipients.
Currently, all donors, whether blood, organs, or tissues, are tested for HIV and two types of hepatitis. These tests aren’t perfect: There’s still what scientists call a “window period” after infection, in which the donor’s structure hasn’t yet produced a detectable amount of virus.
But those windows are now narrow. Researchers at the Centers for Disease Control and Prevention have found that nucleic acid tests, which are commonly used to screen donors, are unlikely to miss an HIV-positive user unless they contracted it in the two weeks prior to donation. Another study estimated that even if a user had sex with an HIV-positive user between a few weeks and a month before donation, the chances of a nucleic acid test missing this infection are less than 1 in a million.
“Very low, but not zero,” said Sridhar Basavaraju, one of the researchers on that study who heads the CDC’s Office of Blood, Organ and Other Tissue Safety. He said the risk of undetected hepatitis B is higher “but still low. “
At least one senior FDA official has indirectly agreed. Peter Marks, who directs the FDA’s Center for Biologics Evaluation and Research, co-authored a report last year that said “three months largely covers” the window era a user can have. The virus is still too low for testing to detect. Scott Haber, director of public fitness promotion at the American Academy of Ophthalmology, said his group’s position is that rules on tissue donation “should be at least more or less aligned” with those for blood donations.
Kevin Corcoran, who heads the American Eye Bank Association, said the five-year abstinence required for gay or bisexual corneal donors is only “completely antiquated” but also impractical, forcing the bereaved to remember five years of your sexual history. .
That’s what Moore discovered one day in July 2013.
Her son enjoyed cartoons, musical shows, and drank soft drinks from his mouth. He was bad at telling jokes, but smart at helping people — Betts once replaced money lost on his little sister’s birthday with his own savings, he said — and enthusiastically chose to be an organ donor when he was given his driver’s license. Moore remembers telling her son to forget about bullying by anti-gay fans at school.
“The young men in the choir told him that he would go to hell because he was gay and that he might as well commit suicide to buy time,” he recalls.
That summer he did. At the hospital, as doctors searched for symptoms of brain activity in the boy before he died, Moore found himself answering a list of questions from the Iowa Donor Network, including: “Is AJ gay?
“Obviously I said, ‘Well, what do you mean by ‘Was he gay?’I mean, he’s never had penetrative sex,” she said. “But they said, ‘We just want to know if he was gay. ‘ And I said, ‘yes, he knew him as gay. ‘”
The Iowa Donor Network said in a statement that the organization may not comment on Moore’s case, but said, “We sincerely look forward to an update to the FDA’s policy to align with the more inclusive strategy found in the blood donation guidelines, which will allow us to comply with the decision. “of all Americans who want to save lives through organ and tissue donation.
Moore said her son’s organs helped save or prolong the lives of seven other people, adding that one child gained his center and a middle-aged woman who gained his liver. Moore exchanges messages with her on Facebook.
A year later, she discovered that her son’s corneas had been rejected as donor tissue in this verbal exchange with the Iowa Donor Network about her son’s sexuality.
“I felt like they were wasting pieces of my son’s frame,” Moore said. “I felt like AJ was still being bullied beyond the grave. “
KFF Health News is a national newsroom that produces in-depth journalism on fitness issues and is one of the primary operating systems of KFF, an independent research, polling and journalism agency on fitness policy. Learn more about KFF.
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Rae Ellen Bichell is a Colorado correspondent for KHN, founded in Longmont, Colorado. Previously, she was a radio reporter covering the region for the Mountain West News Bureau and KUNC. Prior to moving to Colorado, Bichell worked for NPR. He had brief but formative moments. in the newsrooms of Nashville Public Radio and KNKX in Seattle and published articles from Australia, Finland and Lithuania. She is a graduate of Yale University. Follow her on Twitter: @raelnb.