Twenty-one years ago, Tony Mauss and a group of his male friends went to get tested for HIV.
They weren't scared they had caught the virus. The friends, part of a gay student group at Iowa State University, wanted to be ready for a question American Red Cross workers would ask them when they tried to donate blood in 1995: Are you a man who has had sexual contact with another man, even once, since 1977?
After they all tested negative, the group went to a Red Cross blood drive at a bus on campus. Everything was going well until the workers there asked about their sexual history. Once they answered yes, they'd had sex with other men in the past, the workers looked at them sheepishly, saying, "We're sorry," and citing the U.S. Food and Drug Administration's ban on blood donations from men who have sex with men. Mauss and his friends pulled out documentation showing the results of their recent HIV tests.
"We told them, 'Well, we've been to the doctor, we've gotten tested, and we're negative,'" Mauss, then 23, remembers telling the workers. "Can you explain to me why you're not going to take my blood if I have proof that I'm negative?"
The workers remained unmoved and told them they had to leave. Mauss wasn't surprised. For the next decades, he would have to explain to family and friends why he couldn't give blood. Protesting the ban was a skirmish, not a battle like the ones for equal housing, employment and marriage opportunities for the LGBT community, but it still stung.
Three weeks ago, on June 12, Orlando's LGBTQ community was struck by one of the worst mass shooting massacres in modern U.S. history when 49 people were killed and 53 injured at the gay nightclub Pulse. After the early-morning bloodshed, people started lining up by the thousands at Orlando's blood donation centers. Mauss says in between his emotions of fear and sadness that day, there was a glimmer of hope when a rumor started going around that blood centers had lifted the FDA ban against men who've had sex with men in the past year. That hope was quickly shut down by the local center OneBlood, who announced via Twitter, "All FDA guidelines remain in effect for blood donation. There are false reports circulating that FDA rules were being lifted. Not true."
It didn't surprise Mauss, but it cut deeply, especially because his blood could have helped a community in Orlando he belongs to.
"I'm in a long-term relationship," he says. "I've tested negative my whole life. It's rather silly that if you were going to test the blood anyway, why wouldn't you take my blood? To realize that these are my people and that maybe I could help, maybe I could do something tangible, but I can't give blood because I'm a gay man who happens to be sexually active, is angering."
In the weeks after the tragedy, the hints of a battle over the ban are present: Lawmakers in Congress and LGBTQ advocates are urging the FDA to change its policy for good, but the agency remains entrenched to "protect the blood supply."
It's only been seven months since the FDA changed its guidelines on blood donation from men who've had sex with other men from a lifetime ban to a 12-months-celibate deferral period.
The original ban started in 1983 in the face of the AIDS crisis, back when many still called it the "gay cancer" and little was known about how the human immunodeficiency virus worked. As mostly gay, bisexual and queer men died, the hysteria surrounding the disease reached an all-time high because of a belief that the virus could be spread by casual contact.
"Mothers didn't want me picking up their babies," author Edmund White, a gay man who's had HIV since 1985, told CNN in 2011. "People didn't want to kiss you on the cheek. People certainly didn't want to have sex with you, especially other gay people. It was very isolating and demeaning. That was a long battle."
The FDA ruling indefinitely banned queer men because "of the strong clustering of AIDS illness and the subsequent discovery of high rates of HIV infection in that population," according to the agency. Thousands of recipients of donated blood had already become infected with HIV. As scientists learned more about the virus, they found heterosexual people and children could get HIV, and that it was transmitted through blood, semen and pre-seminal fluids, vaginal fluids, rectal fluids and breast milk. Advanced research also helped develop medication to suppress the virus, prevent transmission and help HIV-positive patients lead healthy lives.
Tests also became much more advanced at screening HIV in donated blood, and it's now a standard practice to test all blood for HIV, hepatitis B, hepatitis C, syphilis and the West Nile Virus. The New York Times reports tests can screen donated blood for the virus "in as little as nine days after the donor has been infected." That "window period" of nine days means donated blood could falsely test negative for HIV if the donor were infected and gave blood within the same nine days, which is the FDA's argument for continuing several bans. The FDA requires blood centers to ask dozens of questions regarding eligibility and defers several populations, including: sex workers, with a permanent ban; injection drug users, with a permanent ban; people who have recently acquired a tattoo or piercing, with a 12-month deferral; people who've completed treatment for syphilis or gonorrhea, with a 12-month deferral; and women who've had sex with queer men, with a 12-month deferral.
The agency says the use of deferral questions, donor education material and HIV donor testing has reduced the risk of HIV transmission through donated blood from one in 2,500 units before standard testing to a current estimated risk of about 1 in 1.47 million transfusions.
"In order to best protect the blood supply in the U.S., the FDA based the December 2015 policy update on what we know about HIV epidemiology in the U.S. today," says FDA spokesperson Tara Goodin in an email. "Previously, there was not enough scientific evidence to support a change in blood donation policy for men who have sex with men (MSM) in the United States. The deferral policy is a behavior-based policy, not one based upon sexual orientation. Current epidemiology shows that a history of male-to-male sexual contact was associated with a 62-fold increased risk for being HIV-positive, whereas the increase in risk for a history of multiple sexual partners of the opposite sex in the last year was 2.3-fold."
LGBTQ advocates argue the 12-month deferral against queer men is discriminatory because straight couples can transmit the virus just as easily, and HIV testing is advanced enough nowadays to easily screen for the virus.
"The policy turns away good donors with no regard to their sexual behaviors," Seminole State College student Blake Lynch told Orlando Weekly in 2013. "We need blood so bad that they're letting 16-year-olds donate." In March of that year, Lynch launched a campaign, Banned4Life, hoping to collect 100,000 signatures in order to convince the FDA to lift the ban or at least reconsider the parameters.
In June 2013, the American Medical Association rebuked the FDA ban, saying, "The ban on blood donation for men who have sex with men is discriminatory and not based on sound science." And in November 2014, upon hearing of the impending policy change, Banned4Life posted on its Facebook page, "One step forward today! The Dept. of HHS wants to recommend a one year deferral instead of a lifetime deferral for MSM. We applaud the progress, but are still disappointed that they are focusing on sexual orientation instead of individual sexual behavior."
On June 15, 2016, Lynch, now a registered nurse, penned an op-ed for the New York Times headlined "I Am a Gay Man From Orlando. Why Can't I Donate Blood?"; he pointed out that "gay men like me would like the opportunity to give our much-needed, healthy blood to those who are fighting for their lives right now at Orlando Regional Medical Center."
He also stated, "When I called OneBlood, the blood center that serves the Orlando area, I learned that it still vets donors according to the FDA's old, more stringent guidelines while it works to update its own policy."
On the day of the Pulse shootings in Orlando, even queer men who had not had sex within the past year were still turned away by the local OneBlood center. OneBlood spokesman Pat Michaels told the Washington Post that OneBlood had not updated its system to allow queer men who had been celibate within the past year to donate, but that it would be updated later this year. Orlando Weekly reached out repeatedly to OneBlood, but did not receive further comment.
LifeSouth Community Blood Centers, which supplies blood to more than 100 hospitals in Florida, Georgia and Alabama, was planning to update its guidelines regarding queer men later this summer, but after seeing the outpouring of people who wanted to help on June 12, they updated their guidelines that same day, says Gary Kirkland, a spokesperson for the organization.
The organization had already done much of the background work to update quickly, such as training their staff and changing information on the automated system. Soon, they'll have to update their systems again to screen for the Zika virus.
"Blood donation is highly regulated by the FDA, and if you're not following the rules, you're not going to be in business," Kirkland says. "We were facing 50 to 100 donors that day, so we were able to make that change quickly. It was not as daunting as it would have been for OneBlood to try to make those changes as people lined up on the streets."
Kirkland says every week, they have a couple of donors they have to call back and inform them that their blood tested positive on their screening tests for HIV and they should be tested.
"If someone is sick, they need to know," he says. "The whole purpose of the questionnaire is it's the first line of defense in keeping the blood safe."
Opponents of the deferral against queer men point to a study published in the Columbia Medical Review last year that says the updated policy "is as discriminatory as the lifetime ban and will not significantly increase the number of eligible donors. A shift away from a categorical and unnecessary ban towards a systematic and scientifically based series of tests and screenings that focus on indicators of risky sex would grow America's pool of blood donors without increasing the risk of transfusion-related transmission of HIV."
On a call last week with U.S. Reps. Alan Grayson, D-Florida, and Jared Polis, D-Colorado, along with the National Gay Blood Drive, the advocates argued the deferral should be based on sexual behavior, not on sexual orientation, because it turns away millions of potential donors.
"The gender of one's partner has nothing to do with whether one is engaged in risky behavior or not," says Polis, the first openly gay parent in Congress. "It's high time for this outdated and discriminatory policy to end, and I'm confident with such broad-spread support among both the American public as well as members of Congress, the FDA will be moved to look at the science that shows, in fact, that there's nothing inherently different about the blood of gay or bisexual Americans."
Grayson, who represents Orlando, called donating blood after a tragedy a form of solidarity and citizenship.
"We can't say that we have first-class citizens and second-class citizens," he says. "We can't say some people can give blood and other people can't based upon their sexual orientation or anything like that. ... In one location, we had two blocks that had to be cordoned off because the line was that long – a line two blocks long in the rain of people anxious to give blood that day. And that's a recognition of the impulse we all feel in times of tragedy to help, and no one should be turned away in those kinds of circumstances."
Bob Poe, a candidate for Florida's 10th Congressional District who recently came out as HIV-positive, says aside from stigmatizing all LGBTQ people, the deferrals contribute to the stigma of people living with HIV. (Even today, some people still don't realize that carrying the virus is not the same as having AIDS.)
"It's time to allow people who are able to make their contribution in society," he says. "Lifting the ban doesn't affect me personally, but I know many people who really wanted to do their part that day and couldn't, but brought water and food to people instead. There's absolutely no reason to continue this ban, because all it does is limit the supply and stigmatize LGBTQ people."
Mauss says he hopes people will recognize the deferral as a policy that needs to be challenged as a discriminatory practice.
"I've had enough time to come to terms with it, and I understand why it was initially enacted because people were terrified," he says. "But I don't understand why it's still there in 2016."