When Sean Reinert — a Los Angeles-based musician memorialized by Rolling Stone as a “death-metal drum trailblazer” — died suddenly at the beginning of the year at 48, he had a final wish that his husband, Tom Snyder, thought he could fulfill for him: to donate his organs.
Snyder called to make the arrangements soon after Reinert’s death, and the woman who answered the phone began to go through the standard screening questions. When she asked if Reinert was a sexually active homosexual male, Snyder responded “yes” without a second thought. Then he went numb when he heard her say, “Well, unfortunately, that means …”
Monogamous married gay men like Sean are at a lower risk for HIV than a single straight man with a different partner every day.
“Sean did not have HIV, or any other STD’s for that matter,” Snyder wrote in a Facebook post detailing what happened. “But because he was a gay man living in America in 2020 he was not allowed one of his final wishes.”
While the federal Food and Drug Administration’s restriction of blood donations by men who have sex with men is relatively well known, the restriction of organ and tissue donations by the Department of Health and Human Services, which oversees the FDA, does not get the same attention. The woman on the phone with Snyder was specifically checking about tissue donation, which a sexually active gay man can’t give. And their organs are labeled “increased risk” and therefore often get discarded.
The guidelines for all three types of donations are based on stigma, not medical reasons. And the 112,000 Americans in need of organ donations and the hundreds of thousands more in need of tissue donations can’t afford any unnecessary obstacles.
There’s no denying that men who have sex with men, including gay men, bisexual men and others, are at greater risk for HIV; 57 percent of people living with HIV got it from male-to-male sexual contact. But while other higher-risk groups like intravenous drug users and sex workers face the same restrictions on organ, blood, and tissue donation, not all do, showing the restriction is arbitrary and discriminatory. African Americans, for instance, accounted for 42 percent of new HIV infections in 2018, making them another group at elevated risk for the disease, but there is — rightly — no blanket ban on Black people donating blood, tissue or organs.
Furthermore, the vast majority of the men this guidance excludes do not have HIV. According to a 2016 analysis published in the Journal of Medical Internet Research, 89 percent of men who have sex with men are HIV-negative. The policies also don’t take into account the risks of sexual activity like not using a condom with an unknown partner. Monogamous married gay men like Sean are at a lower risk for HIV than a single straight man with a different partner every day — yet another example of how these policies are discriminatory.
The FDA and HHS finally showed some movement on this issue by amending the guidelines on blood and organ donations in recent years. While restrictions on all bodily donations started out as lifetime bans, guidelines for blood donations were first eased in 2015 to requiring 12 months without sexual contact with another man, and now a man can donate his blood or tissue as long as he hasn’t had sex with another man in the last three months. But for many men, this abstinence requirement still amounts to a lifetime ban.
While any reduction in these ludicrous restrictions is a step in the right direction, the three months of abstinence is nonsensical because it doesn’t actually increase the safety of recipients, even as it continues to discriminate against gay and bisexual donors.
The FDA admitted in April that the replacing of the lifetime ban with a 12-month celibacy requirement in 2015 caused “no increase in risk to the blood supply.” In the same document, the FDA noted that other countries, including the United Kingdom and Canada, that previously moved to a three-month deferral period had made no reports “suggesting safety concerns following the implementation of this change.” The same would almost certainly be true if the U.S. federal government allowed tissue and blood donations outright.
While organ donations by men who have sex men are permitted, the federal government deems those organs at “increased risk.” When these organs are offered to those awaiting organ donations, many won’t accept them. Hundreds of viable “increased risk” organs go unused every year, even as thousands die each year waiting for an organ transplant.
The pain caused by not honoring the last wishes of men who wanted to make the ultimate gift, saying their bodies are better used as medical waste than for saving lives, is not worth the perceived — but actually untrue — decrease in risk.
When AJ Betts Jr. of Iowa died by suicide after homophobic bullying in 2013, his final wish had been to donate his organs and tissue. “I couldn’t understand why my 16-year-old son’s eyes couldn’t be donated just because he was gay,” Betts’ mother said at the time. “My initial feeling was just very angry.”
Snyder echoed that frustration in describing his experience. “It makes me sick to my stomach and incredibly angry.”
The HHS has the power to save lives by finally ending harmful policies that are not only based in stigma, but perpetuate it.
CORRECTION (Sept. 23, 2020, 6:45 p.m. ET): An earlier version of this article misstated the rules for organ donations from men who have had sex with other men in the last three months. Such donations are permitted, but labeled as increased-risk organs, which leads to them often being unnecessarily discarded. They are not banned outright.