Jay Franzone just wanted a Six Flags ticket.
As a 16-year-old student in Connecticut, Franzone went with his friends to donate at their high school’s blood drive back in 2011. Students who donated received a ticket to Six Flags New England. His friends got to go, but Franzone didn’t – as a gay man, he wasn’t allowed to give blood. Starting in 1977, guidelines from the Food and Drug Administration stipulated that men who have had sex with men (MSMs) were banned from donating blood for life. In December 2015, that policy was updated to a one-year deferral for gay and bisexual men since the last instance of same-sex sexual contact.
“When I heard about this policy, it didn’t make sense,” Franzone tells Rolling Stone. “I’ve known all my life that anyone can get HIV. It’s a virus – it doesn’t discriminate.”
But Franzone, who had come out only a year earlier, wasn’t thinking about the science behind the policy. According to the FDA, the deferral is based on data from the Centers for Disease Control showing that “about two-thirds of all new HIV cases occur in men who have sex with men, who make up two percent of the total U.S. population.” But when you’re 16, he says, you think that you’re dirty and that you’re somehow the problem.
“You can’t give blood because you’re gay, so there must be something wrong with you,” Franzone says.
Now 21, Franzone decided to protest the current policy by remaining abstinent for a year in order to donate under current FDA guidelines, and this week wrote an op-ed for the New York Times about his experience. Franzone made an appointment with the American Red Cross to give blood on January 10th, and the morning of donation day, Franzone was not thinking about the importance of the act. He was nervous about what to wear. A recent college graduate, he has a collection of bow ties; his favorite is pink with blue polka dots on it. But as he waited to be seen in the lobby of the Red Cross building, Franzone wore a short-sleeve henley, anxious but prepared to do good.
After all, that’s what this is about.
“In the U.S., we have an altruistic donor system,” Franzone says. “People give blood because they want to do the right thing. They either want to give back if they’ve needed blood, they know someone who needs blood, or they might need blood someday. A unit of blood is used every two seconds in this country.”
Last year, the LGBT community was powerfully reminded of that statistic following an attack on Pulse nightclub, the deadliest mass shooting in U.S. history. Forty-nine people were killed and 53 more were injured after a gunman opened fire on the Orlando gay bar. Although OneBlood, a Florida-based donation center, estimated that over 28,000 people donated the week following the tragedy, MSMs were not among them. For gay and bisexual men who will remain sexually active throughout their lives, a one-year deferral amounts to a lifetime ban. This means that these people were not allowed to help their own community members during a time of extraordinary need.
Meanwhile, current medical science actually supports allowing gay and bisexual men to donate. The lifetime ban on MSM donations was put in place during the height of the AIDS epidemic in 1983, a time when researchers knew very little about how HIV was contracted or transmitted. Due to subsequent advances in testing, the presence of the virus can now be detected in the bloodstream in as few as seven days.
The Pulse shooting, however, served as a pivotal moment for the movement to push for a full lift of regulations that keep MSMs from donating blood.
Democratic representative Mike Quigley, who has been working on the blood ban since being voted into the House of Representatives in 2009, says that a number of Congresspeople who were unaware of the issue suddenly got on board. Senators Bernie Sanders, Elizabeth Warren and Mark Kirk, a Republican, signed a letter to the FDA urging them to reconsider the current policy and, in July, the department announced that it would be considering recommendations toward enacting new donation guidelines.
But a mixture of fear and outdated stigma continues to hold the FDA back, according to Jason Cianciotto of Harlem United, a New-York-based HIV advocacy group. From conversations with the department, Cianciotto claimed that the organization is worried about a new virus – referred to as a “blood borne pathogen” – entering the donation pool, one that would unable to be detected or filtered out through current screening processes.
“There’s a concern that gay and bisexual men could be a ‘vector’ for a yet to be known or discovered pathogen that could be transferred through blood the same way that happened with HIV in the 80s,” Cianciotto claims. “The de facto lifetime ban is an action they’re taking based on an unknown fear of something happening in the future versus what is already known.”
Jeremiah Johnson, the HIV Prevention, Research and Policy Coordinator for New York’s HIV Research Treatment and Action Group, argued this belief is not only bad science but sends a harmful message that gay and bisexual men are inherently diseased.
“I don’t think that we can make policy based on hypothetical risk,” Johnson says. “If that were the standard, we would have a lot of silly policies – because we can dream up a lot of bad scenarios. Assuming that the next major blood-borne pathogen that will have a major impact on our healthcare system will come from gay sex is a huge assumption, completely unfair, completely unfounded and based solely in homophobia and stigmatization of the sex that we have.”
In an email to Rolling Stone, FDA spokesperson Lyndsay Meyer acknowledged concerns in the department about a new virus entering the blood supply, but maintained that the “current guidance focuses on reducing the risk of HIV transmission.”
Meyer also says that the FDA is simply doing what has worked for other countries. Although Spain and Italy have switched to a risk-based assessment, which looks at individual risk factors rather than singling out particular groups for discrimination – without leading to an outbreak of HIV – she believes those cases are “very different.” Meyer compares the U.S. to Australia, another country with a one-year deferral for MSMs.
“A 12-month deferral has been well-studied and, among other things, found to maintain the safety of the blood supply in Australia, a country with epidemiology and blood screening systems similar to the U.S.,” Meyer says.
Cianciotto also acknowledges another issue with striking down the deferral period for gay men: the bottom line. Because blood testing in the U.S. is conducted through regional groups, rather than a national center, not every testing center has the same access to updated, current medical testing technology. Because of budgetary concerns, many groups employ what’s known as “pooled testing” to save money.
“They take samples from a number of blood donations and test them all at once for HIV, rather than testing each individual donation,” Cianciotto says.
This protocol is vastly different from other nations, including Australia, where blood samples are tested separately. Switching to an individual testing process would be costly for the FDA, and it’s an open question as to whether the incoming Trump administration will be willing to put the funding and the effort into updating the screening process to meet current medical standards, which support either reducing the deferral period or striking down the ban entirely.
Kelsey Louie, CEO of Gay Men’s Health Crisis, claims that all blood borne pathogens, including Hepatitis C, can now be detected in up to 25 days. The LGBT advocacy organization has, thus, suggested a two-month waiting period for MSM donors. Cianciotto believes that a window, were it necessary, could be reduced to a month.
Changing those policies could have an enormous impact on the blood supply. The American Red Cross has said that of the 38 percent of Americans eligible to donate at any given time, just 10 percent actually do. Should the FDA move to a risk-based assessment, The Williams Institute, a pro-LGBT think tank at the University of California Los Angeles, estimated that 4.2 million more people would be allowed to donate than were previously allowed under the lifetime ban. That would result in 615,000 more pints of blood each year.
That massive influx of donations would result in countless lives being saved.
When Franzone went public with his pledge to remain abstinent to donate blood, he received a Facebook message from a mother whose son was born with a congenital heart defect. Her gay family members and friends became her support network while her son was on life support in the ICU, where he stayed for four months. When she learned that they couldn’t donate the blood her son needed to stay alive, she wrote, she was “heartbroken.” She had no idea.
“We saw firsthand how unfair and unjust policies kept some of the kindest, most caring men from helping, and made them feel lesser,” the woman wrote.
Her son, who receives frequent blood transfusions, turned four this year. In the donation room of the Red Cross, the walls are plastered with photos featuring the smiling faces of those impacted by the sacrifices of men and women who took the time out to give. There’s the happy toddler with her hair in a messy ponytail who has had 100 transfusions in four years, and the woman who needed an emergency donation to save her life following a skiing accident. And if the FDA could only ditch outdated stigma and catch up to modern science, more of these stories will get to be told.