Alexander “AJ” Betts Jr. : “FDA Urged To Relax Tissue Donation Rules for LGBTQ+”

The FDA’s Continued Restrictions on Tissue Donation by Gay and Bisexual Men

In recent years, the federal government has made strides in reducing restrictions on organ and blood donation by men who have had sex with other men. However, the FDA’s guidelines on donated tissue, which includes corneas, remain unchanged. Advocates and lawmakers are pushing for the FDA to align the guidelines for tissue donated by gay and bisexual men with those for the rest of the human body.

Advocacy Efforts for Change

Sheryl J. Moore, a vocal advocate for changing these guidelines, has been leading the charge since the death of her 16-year-old son, Alexander “AJ” Betts Jr., in 2013. Despite successfully donating his internal organs to seven individuals, his corneas were rejected due to the FDA’s restrictions on tissue donation by gay men.

Moore and Dr. Michael Puente Jr. initiated the “Legalize Gay Eyes” campaign, garnering support from national eye groups and lawmakers to push for policy changes.

The Need for Updated Guidelines

Dr. Puente, a pediatric ophthalmologist, highlights the inconsistency in current donor guidelines, especially in light of advancements in HIV testing technology. He argues that the current restrictions are outdated and discriminatory, preventing potentially life-changing cornea transplants.

The FDA’s rationale for these policies, established 30 years ago to prevent HIV transmission, no longer aligns with current scientific knowledge. Advocates argue that the guidelines should focus on specific behaviors that increase HIV risk rather than singling out specific groups of people.

Call for Action from Lawmakers

Rep. Joe Neguse and other members of Congress have called on the FDA to revise its tissue donation guidelines to be more inclusive and grounded in scientific evidence. They emphasize the need for policies based on individualized risk assessments rather than historical biases.

Challenges Faced by the LGBTQ+ Community

The LGBTQ+ community continues to face barriers in tissue donation, with current guidelines imposing a five-year deferral period on cornea donation by sexually active gay men. This restriction, considered outdated and impractical, hinders the opportunity to save lives through organ donation.

Advancements in Testing Technology

Recent studies have shown that HIV and hepatitis screening tests for donors are highly effective, with minimal risk of missing infections. Experts suggest that the current guidelines do not reflect the technological advancements in testing and should be updated to be more inclusive.

A Personal Perspective

Sheryl J. Moore’s experience with her son’s cornea donation rejection sheds light on the emotional impact of these policies. Despite the successful donation of his organs, the rejection of his corneas due to outdated guidelines left Moore feeling that her son’s legacy was not fully honored.

Moore’s story underscores the importance of revising FDA policies to ensure that all individuals, regardless of sexual orientation, have equal opportunities to donate tissue and potentially save lives.

Conclusion

As advocacy efforts continue and lawmakers push for change, the spotlight remains on the FDA to update its guidelines on tissue donation. The need for inclusivity, fairness, and scientific accuracy in these policies is essential to ensure equitable access to life-saving donations.