A still from a PSA for the gay male blood donation ban awareness campaign Blood Equality
After this June's Pulse nightclub tragedy in Orlando, thousands lined up in Florida and around the country to donate blood. OneBlood, a network of blood banks serving most of Florida and parts of Georgia, Alabama, and South Carolina, said 28,000 people donated blood in the week after the attack, the largest response seen since 9/11.
Among those who lined up were members of the LGBTQ community, galvanized to roll up their sleeves and support victims of the deadliest mass shooting in American history, an unbearable loss of life in what was thought to be a safe space—a gay Latin dance night.
But to their surprise, many gay men and trans people were turned away, despite false rumors that their donations would be accepted. Until last year, an FDA rule refused donations from men who had ever had sex with men, even once. In December 2014, that restriction was lessened to men who had sex with men within the past 12 months, which still ignores factors like the donor's testing status or the realities of their sex life. While most FDA restrictions on blood donors target factors specific to individuals, such as a person's travel history or medication, the ban on gay men targets an entire class.
When the ban was first enacted in 1983, at the height of the AIDS crisis and under the Reagan administration, the focus on gay men made some sense, as little was known about HIV and AIDS. But by the time queer people lined up in Orlando, science had long since moved on.
Today is the 28th annual World AIDS Day, and advances in medical science mean that we know more about HIV and AIDS than ever before. Blood HIV testing methods are now around 99% effective, HIV can now be detected in blood as soon as nine to 11 days after infection, and the FDA's 12 month deferral policy has been roundly criticized by the American Public Health Association and others as "not based in science."
And yet the FDA's outdated restriction lingers.
"The fact that these gay men had been slaughtered and their friends hoped to help them out in the only way they could and were barred from doing so that was a brutal wake up call," Mark Joseph Stern, a legal writer for Slate who's covered the blood ban for years, told me. "I think a lot of people weren't aware that this was the policy until the lines of people in Orlando."
As blood banks turned away eager donors simply because they were gay, mourning gave way to outrage. Publications from the New York Times to the Atlantic covered the cognitive dissonance between the gay men who wanted to help victims and the bigoted, outdated policies that prevented them from doing so.
Queer health advocates and activists, who had been urging for years that the ban be replaced with individualized screening, seized on that momentum to push for change, with campaigns like the social media awareness effort Blood Equality. This July, the FDA opened a comment period for the public to weigh in on its policy. That comment period closed last month, and a report is anticipated sometime in 2017.
Experts agree that the ban is unsupported by scientific evidence. "We can understand all the precautionary procedures in place, except for the one that says gay and bisexual men are treated differently," said Kelsey Louie, CEO of the HIV/AIDS nonprofit Gay Men's Health Crisis (GMHC).
Even the one-year waiting period, he said, is "a step that's not rooted in science. Twelve months seems random. There's nothing in the data or the science that tells us that's necessary."
"It obviously sends a stigmatizing message," said Brad Sears, Executive Director of UCLA's LGBTQ research organization The Williams Institute. "It also sends the wrong message to everyone who fills out the screening survey—to have a message reinforced that it's gay men who are at risk for HIV, as opposed to all people who engage in certain sorts of behaviors."
A 2014 Williams Institute study estimated that if the ban was lifted, 360,000 more people would donate blood each year, increasing the national supply by two to four percent. That increased supply would likely contribute to over a million life-saving procedures on an annual basis.
Watch the trailer for Gaycation's special episode about the Orlando shooting:
Though change has been slow, the FDA does seem to be listening to outcry from the scientific and LGBTQ communities. The recent comment period gave advocates cause for optimism, and there have been other encouraging signs: For the last two years, Stern and the Williams Institute have hosted a Blood Equality panel, and while the FDA declined to participate in 2015, this year they sent a two-minute video in which the FDA's Dr. Peter Marks confirmed that the policy is still undergoing review, and that individual risk assessment, rather than a blanket ban, could be an "optimal" means of screening donors.
"There's been cause for optimism, but they've been very sporadic," said Michael Czaczkes, Director of Public Affairs and Policy at the GMHC, referring to the comment period and the implementation of the one-year deferral period.
"What doesn't give us hope is the new administration," said GMHC CEO Kelsey Louie.
This Tuesday, President-elect Trump's transition team announced that they'd picked Tom Price as his Health Secretary; Price has publicly expressed anti-gay and transgender views before, and scored a zero on the Human Rights Campaign's congressional scorecard for measuring support for LGBTQ rights and equality.
"All the FDA officials are worried if they're going to be at work February 1st," said UCLA professor Jeffrey Klausner at the recent Blood Equality panel. "Everybody is kind of looking for new jobs nobody knows what the new administration is going to put in place."
The Williams Institute's Brad Sears emphasized that even under ideal political conditions, progress toward a less discriminatory FDA rule would take some time. "The next step that seems likely is an articulation of a desire for a policy that would involve a more individualized assessment," he said, followed by testing of new screening questions and then a trial. "That already is a process that would take some time."
"There's a lot of unknowns about what the next step is," agreed Czaczkes. "We don't want this to get lost in the weeds."
"I would guess years," said Kelsey Louie when asked about a timeline for repealing the ban. "But that doesn't mean we stop fighting."
He added, "we want the clock to start now."
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