Alexander “AJ” Betts Jr. : “FDA Urged to Relax Tissue Donation Restrictions for Gay Men”

Accident – Death – Obituary News : : 1. “FDA tissue donation restrictions gay men”
2. “FDA relax gay men tissue donation”

In 2020 and 2023, the UK government updated regulations on organ and blood donation, easing restrictions for men who have had sex with other men. However, restrictions on donated tissue, such as corneas, remain unchanged. Advocates like Sheryl J. Moore and Dr. Michael Puente Jr. are calling for a reduction in the deferral period for tissue donations from gay and bisexual men. Despite advancements in HIV testing, the FDA has yet to update its guidelines. Lawmakers, including U.S. Rep. Joe Neguse, stress the need for science-based policies and individualized risk assessments. The FDA’s delay in updating regulations has left many frustrated and seeking change.

The federal government made significant changes in 2020 and 2023 regarding who could safely donate organs and blood in the United Kingdom. These changes included reducing restrictions on men who have had sex with other men. However, the restrictions on donated tissue, which includes organs like eyes, skin, and ligaments, remain in place. Many advocates, lawmakers, and organizations focused on increasing cornea donations are frustrated by the lack of progress in this area. They are calling for alignment in guidelines for tissue donated by gay and bisexual men with those that apply to the general population.

One of the leading voices advocating for lighter restrictions is Sheryl J. Moore, who became an advocate after her son’s tragic death in 2013. Alexander “AJ” Betts Jr.’s internal organs were successfully donated to seven individuals, but his eyes were rejected due to a single question about his sexual orientation. Moore, along with Dr. Michael Puente Jr., a prominent Colorado physician, launched the “Legalize Gay Eyes” campaign, which gained national attention and support from eye care professionals and legislators.

Dr. Puente, a paediatric ophthalmologist affiliated with the University of Colorado School of Medicine and Children’s Hospital Colorado, highlighted the outdated nature of current donor guidelines, particularly in light of advancements in HIV testing. He pointed out the inconsistency where a gay man can donate their heart for transplant, but not a heart valve, calling it a categorical ban that needs to be addressed.

The justification for these policies, established three decades ago to prevent HIV transmission, is now considered unnecessary and discriminatory by advocates for change. They argue that policies should focus on individual behaviours known to increase HIV risk, rather than specific groups of people. Despite the FDA acknowledging the need for change and listing updates to tissue donation guidelines on their agenda since 2022, no concrete actions have been taken yet.

U.S. Representative Joe Neguse from Colorado expressed his disappointment in the FDA’s lack of response, stating that current deferral policies perpetuate stigma against gay men. He emphasized the importance of basing policies on individual risk assessments and scientific evidence rather than historic bias. The FDA, in response, highlighted the relative risks associated with HIV transmission during ophthalmic surgical procedures, indicating ongoing review of donor screening and testing protocols.

In contrast to the outdated policies for cornea donation, the UK Public Health Service adjusted organ donation guidelines in 2020 to allow sexually active gay men to donate organs. However, restrictions remain in place for cornea donation, requiring a five-year abstinence period for gay or bisexual donors. This discrepancy in guidelines has led to the rejection of numerous potential cornea donors, despite the low risk of HIV transmission through corneal transplants.

Corneas are vital for restoring sight and contain no blood or bodily fluids capable of transmitting HIV. Extensive testing is conducted on all donors to detect HIV and hepatitis, with modern tests significantly reducing the window period for infection detection. Despite these advancements, the five-year abstinence requirement for cornea donation remains a barrier for many potential donors.

Advocates like Dr. Puente and organisations such as the Eye Bank Association of America are calling for alignment in tissue donation guidelines with current blood donation policies, which focus on individual risk factors rather than blanket restrictions. They emphasise the need for a more inclusive approach to tissue donation to honour the decisions of individuals who wish to save lives through donation.

In a poignant recount of her son’s donation journey, Sheryl J. Moore shared the impact of outdated guidelines on her family. Despite the life-saving impact of her son’s organ donations, the rejection of his corneas due to his sexual orientation left her feeling that his legacy was dishonoured. She continues to advocate for policy changes to ensure that no other family faces similar discrimination in the donation process.

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