By Nico Lang
The day after Barton Lynch lost a major internal organ, he was already up and walking around.
On May 29, the 24-year-old went in for a non-directed kidney donation. In most kidney transplants, the donor goes in with a recipient in mind, perhaps a sick family member or friend experiencing kidney failure. A non-directed donor, however, essentially throws their kidney on the open market for anyone who needs it. Although less common, non-directed kidney donations can be extremely impactful, with organizations like Johns Hopkins reporting that they can potentially save dozens of lives.
“For example, if you needed to get a kidney, I wanted to give mine to you, and you and I are not a match, I can give my kidney to someone else who might be in the same situation, but their person is a match for you,” Barton, who works as a researcher for a consulting firm in Washington, D.C., explained to MTV News over the phone. “It opens up these long chains of people for donation.”
Lynch describes the process as surprisingly easy. First, he and his doctor decided surgery was the right choice for him. On the day of his surgery, his parents picked him up at 5:30 in the morning to go to the hospital, he changed into his gown, they knocked him out, and he woke up with one fewer kidney.
While Lynch says he was inspired to get involved because he wanted to make a difference in someone else’s life, the mission was also a personal one. During his freshman year of college, his father was diagnosed with cancer. Because of the medications the elder Lynch, who had consistently donated blood throughout Barton’s life, was taking for treatment, he was unable to continue his donations.
“My dad has always led by example on helping others, so I knew that I would be doing him proud by carrying the blood donation torch as much as possible while he could not,” Lynch recalls.
While Lynch donated throughout college, he had no choice but to find another way to continue his promise after he began dating both men and women two years ago. Per a Food and Drug Administration (FDA) policy, all men who have sex with men (MSMs) are banned from donating blood unless they refrain from same-sex intimacy for 12 months; Lynch is currently in a relationship with another man.
Jay Franzone, a former spokesperson for the National Gay Blood Drive, made headlines in 2016 when he remained abstinent for a full year just to donate. But this policy is comparatively lenient in comparison to past policies; before it was rolled out in December 2015, gay and bisexual men were banned for life.
According to Sean Cahill, director of health policy research at the Fenway Institute, the guidelines are a remnant of HIV/AIDS panic in the 1980s, a time when he says the medical community “didn't know a lot” about the virus or how it spread. Due to the lack of effective screening, Cahill says thousands of people contracted HIV through blood transfusions “very unnecessarily and very tragically.”
“It’s something that policymakers remember and don't want to repeat,” he tells MTV News.
Adopted two years after the New York Times first reported on a “rare cancer seen in 41 homosexuals,” the 1983 policy targeted “Haitians, hemophiliacs, homosexuals, and heroin addicts,” also known as the “4Hs.” The guidelines were almost immediately met with controversy. The ban on donors from Haiti, which has among the highest rates of HIV/AIDS among Caribbean nations, was lifted in 1990 after up to 80,000 people marched across the Brooklyn Bridge in protest.
However, the prohibition on MSM donors has effectively remained in place; critics have called the new 12-month deferral period a “de facto” ban and are urging the FDA to go further in its reconsiderations of the rule.
“It often takes a long time to reverse or change outdated policies,” Cahill says. “They’re no longer based on the most recent science.”
As of 2014, organizations like the American Association of Blood Banks, America’s Blood Centers, and the American Medical Association have called for the FDA to adopt the “risk-based assessment” test favored by Italy and Spain. Instead of solely interrogating MSMs about their behavior, these countries ask all potential donors specific questions about their sexual histories in order to determine an individual’s likelihood of transmitting HIV/AIDS.
Under the risk-based assessment test, a straight man who has unprotected sex with dozens of sexual partners would be more likely than a gay man who is in a monogamous relationship to be rejected as a candidate for blood donation. Under the FDA’s current guidelines, the opposite is true.
According to a 2016 report from Vice magazine, Italy has seen “no higher incidence of HIV transmissions as a result” of the guidelines, which were adopted in 2001.
In fact, those questions are similar to the ones Lynch says he was asked during his application process to donate a kidney. He says his medical team only asked about his sexual orientation twice: once when he registered to donate in November and then after they scheduled his surgery. Lynch’s doctors did mention, however, that whomever eventually received his kidney would be informed that the donor is more likely to transmit HIV.
“My surgeon talked to me about that,” Lynch remembers, “and how it was something she didn't agree with.”
According to Dr. Jennifer Verbesey, the surgeon who performed Lynch’s operation at Georgetown University Hospital in Washington, D.C., the chances that a patient will contract HIV from an MSM kidney donor is “infinitesimally” small; she estimates the odds as “one in many millions.”
“Our tests are extremely sensitive now for picking up HIV,” Dr. Verbesey tells MTV News. The surgeon, who has operated at Georgetown for eight years, reports that current technology can detect the presence of the virus in the bloodstream within “five to seven days before donating.”
While the FDA is responsible for regulating the blood supply in the U.S., the standards for kidney donation are determined by another branch of the Department of Health and Human Services (DHHS): the Health Resources and Services Administration (HRSA). The agency, which oversees the United Network for Organ Sharing (UNOS), does not restrict gay and bisexual men from donating a kidney.
According to Anne Paschke, a media relations specialist with UNOS, HRSA has actually never banned gay and bisexual men from donating a kidney. Although the federal agency was established in 1982, it didn’t begin sharing organs on the Organ Procurement and Transplantation Network (OPTN) until 1987.
“The only total rule out was that you could not donate if you had HIV,” Paschke tells MTV News. “Nobody should rule themselves out, especially now.”
While Paschke wasn’t sure why HRSA is responsible for kidney donations while the FDA regulates the blood supply, the HHS department also oversees bone marrow and tissue donations. Gay and bisexual men were banned from application to the National Bone Marrow Registry until 2015, when they were allowed to donate for the first time.
Be the Match, which manages donations through the National Bone Marrow Registry, says that it has not seen an increase in HIV/AIDS transmissions in the tissue supply in the past four years. After the new guidelines were announced, Mary Halet, the former director of community engagement for the registry organization Be the Match, claimed that federal agencies determined that “patients were not placed at any additional profound risk.”
“What we learned over time is that as donors donated having those risk factors, we found consistently that their infectious diseases were negative,” Halet told NBC News. “The risk of dying from leukemia or blood cancer is far greater than the potential risk of dying from infectious disease transmission.”
Even as other agencies update their guidelines, the FDA has remained extremely resistant to adopting new policies on MSM donations. Just days before he donated a kidney, Lynch emailed a representative with the agency to protest the current 12-month deferral window. A representative with its Center for Biologics Evaluation and Research (CBER) replied by claiming the FDA is “sensitive to the concerns of potential donors and other individuals affected by current blood safety policies.”
“The FDA's primary responsibility with regard to blood and blood products is to assure the safety of patients who receive these life-saving products,” its response read. “The FDA uses multiple layers of safeguards in its approach to ensuring blood safety, which include donor screening and deferral based on risk factors, blood testing for markers of infection, and inventory controls.”
But despite the FDA’s assertion that gay and bisexual men have a “62-fold increased risk for being HIV positive,” Dr. Verbesey agrees with Cahill that the guidelines on blood donations are “outdated.”
Just as protesters marched to end the discriminatory policies targeting Haitans nearly three decades ago, the fight to end stigma continues on. After gay and bisexual men were unable to give blood to the survivors of the Pulse nightclub shooting, in which 49 people were gunned down at a gay bar in Orlando, Florida, 32 Congressional Democrats sent a letter to the FDA urging the agency to reconsider its 12-month deferral period.
“The FDA’s deferral policy labeled many MSM men as ineligible to donate blood given the impractical standards these men are forced to meet,” the letter states. “Members of the community most affected by this tragedy found themselves ostracized from participating in the recovery.”
But last year, British artist Stuart Semple found a new way for MSMs to donate. Because they couldn’t give blood, gay staffers at the ad agency Mother donated to a t-shirt instead, which Semple called “Blood is Blood.”
“This shirt is printed with the blood of gay men,” it reads.
While activists continue to push for policies that reflect where science already is on the issue, Lynch hopes to raise awareness about other opportunities for gay and bisexual men in the U.S. who want to get involved. He experienced no complications with his surgery and does not expect any long-term health impacts as a result of the donation; his other kidney will eventually expand to 1.5 times its volume to replace its twin.
The Monday after his surgery, Lynch was already back to work.
“I think that it's just a good way to contribute,” he says of his experience. “It's something that really didn’t impact me much, but it can really make a difference for somebody else.”