Alexander Betts Jr. : FDA Urged to Relax Tissue Donation Rules for LGBTQ+ Men

Accident – Death – Obituary News : : 1. “Tissue donation restrictions LGBTQ+”
2. “FDA guidelines donation men”

The FDA’s outdated restrictions on donated tissue, particularly corneas, continue to discriminate against gay and bisexual men. Advocates, lawmakers, and medical professionals are frustrated by the FDA’s refusal to align tissue donation guidelines with advancements in HIV testing. Despite scientific progress, gay men face a five-year celibacy requirement to donate corneas, a policy deemed unnecessary and discriminatory. Efforts to change these policies have gained momentum, with calls for individualized risk assessments instead of categorical bans. The FDA’s reluctance to update its guidelines perpetuates stigma and undermines the potential for life-saving donations from marginalized groups.

The Heartbreaking Story of AJ Betts Jr. and the Call to Change FDA Policy

In a small town in Colorado, a mother named Sheryl J. Moore faced a devastating loss in 2013 when her 16-year-old son, Alexander “AJ” Betts Jr., tragically passed away. Despite the heartache of losing her son, Moore found solace in the fact that AJ’s internal organs were successfully donated to seven individuals in need. However, her hopes of donating his eyes were shattered when a single question about AJ’s sexuality led to the rejection of his corneas.

Moore, alongside Dr. Michael Puente Jr., a pediatric ophthalmologist, launched a campaign called “Legalize Gay Eyes” to challenge the FDA’s outdated guidelines on tissue donation. They highlighted the discriminatory nature of the rules that prevented gay and bisexual men from donating corneas, despite advancements in HIV testing that could effectively mitigate the risk of transmission.

The Push for Change and Advocacy Efforts

The issue gained national attention as Moore and Puente rallied support from eye groups, lawmakers, and advocacy organizations to urge the FDA to revise its policies. They called for a reduction in the deferral period for gay and bisexual men from five years to just 90 days, aligning the guidelines for tissue donation with those for organ and blood donation.

Rep. Joe Neguse (D-Colo.) was among the many Congress members who signed a letter in 2021 condemning the FDA’s deferral policies as stigmatizing and outdated. They emphasized the need for individualized risk assessments based on scientific evidence rather than historic biases.

The Scientific Basis for Change

Despite the FDA’s claims of relative risks associated with tissue donation, scientific research has shown that current testing methods can effectively detect HIV and hepatitis in potential donors. Experts like Dr. Puente and public health advocates argue that the existing guidelines are not only discriminatory but also unnecessary in light of technological advancements.

With the FDA’s Center for Biologics Evaluation and Research considering changes to the tissue donation guidance, the pressure is mounting for a swift revision that reflects the current understanding of HIV transmission and testing capabilities.

A Mother’s Grief and Advocacy Journey

For Moore, the fight to change FDA policy is deeply personal. The memory of her son’s generosity in choosing to be an organ donor is overshadowed by the rejection of his corneas based on outdated criteria. She continues to advocate for a more inclusive approach that honours the wishes of individuals like AJ who seek to save lives through donation.

The emotional toll of losing AJ and witnessing the rejection of his corneas has fueled Moore’s determination to ensure that no other family experiences the same heartbreak due to discriminatory policies. Through her advocacy efforts and the support of allies like Dr. Puente, she remains committed to challenging the status quo and demanding a fair and science-based approach to tissue donation guidelines.