Ramon Gardenhire remembers being in law school at Wayne State University in Detroit and trying to give blood for the first time. He went with a group of friends and sat down with the screener.
"She was going through all the list of questions when she asked, 'Have you had sex with any men since 1978?'" Gardenhire says.
After joking about how that was the year he was born, Gardenhire told her yes, he had, publicly revealing his status as a gay man.
With that admission he was denied the chance to give blood.
"I was floored," says 38-year-old Gardenhire, who finished law school in 2003 and is now vice president of policy for the AIDS Foundation of Chicago. "It was the most surreal thing, going to law school and trying to do my civic duty and then hearing that. There have been many times since then when I've wanted to give blood but can't because of who I choose to love."
He's not alone. In the wake of Sunday's massacre in Orlando that left 49 dead and 53 wounded in the worst mass shooting in U.S. history, many gay and bisexual men in Chicago and cities around the country have wanted to donate blood but have been denied. That's because the U.S. Food and Drug Administration's policy bans gay or bisexual men who have sex with another man in the past 12 months from donating blood.
"The irony of the whole situation is this policy is rooted in discrimination," Gardenhire says. "It perpetuates a stigma that dehumanizes the gay community. These policies aren't based on science or data."
The techniques used to screen donated blood have improved in recent years, says Renslow Sherer, a professor of medicine at University of Chicago who specializes in infectious diseases with an emphasis on HIV.
"A ban in the past made sense, but that's not the case anymore," Sherer says. "Because technology is so much better, we can test more accurately and detect earlier on. We've always had good antibody tests, where we could test if someone was affected, but with the new tests we can detect acute infection before the antibodies are even produced."
Sherer says the latest generation of testing ensures the blood supply is "99.9 percent" safe and prescreened for various infectious diseases including HIV and hepatitis, in a similar fashion to how organs are prescreened before a donation is implanted inside a recipient. While the detection window was once three to six months, Sherer says HIV can now be detected as early as two to four weeks within infection. The National Institutes of Health says in its general guidelines most people will typically develop antibodies within three months, but the "window can vary depending on the HIV test being used."
A need for policy changes?
Since the FDA regulates blood collection on a federal level, it impacts how blood banks in Illinois and other states can accept donations. At the height of the AIDS crisis in the 1980s, the FDA instituted a lifetime ban on gay or bisexual men donating blood. "It was more panic than reason," says Illinois congressman Mike Quigley, the vice chair of the congressional LGBT Equality Caucus.
In 2010, the U.S. Department of Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability determined the ban was "suboptimal" and decided to reevaluate its blood-donation criteria. Last December, the lifetime ban was lifted and changed to the current rule that bans men who have sex with men from donating unless they have been celibate for the past 12 months.
But Quigley, who's pushed for years to repeal the lifetime ban, doesn't think the current legislation makes sense either. "Number one, it's a bad policy," Quigley told the Reader. "Number two, we always have shortage of blood. If we have a ready, willing, and able supply, let's get on it."
In an e-mail interview, Tara Goodin, a press officer with the FDA, said, "At this time there is an adequate supply of blood to meet the need. . . . We empathize with those who might wish to donate, but reiterate that at this time no one who needs blood is doing without it."
She later added, "Moving forward, the FDA will continue to reevaluate and update its blood donor deferral policies as new scientific information becomes available."
Although there's been a recent outpouring of blood donations during the past few days, in the past few years there have been numerous public requests for blood donations due to shortages. They ranged from requests at Cook County hospital due to summer street violence to severe winter weather causing a national shortage to a request made by the Red Cross Missouri-Illinois blood service region last summer after it received approximately 3,000 fewer donations per month in June and July 2015 than in the previous ten months of the year. LifeSource, which has 18 donor centers in the Chicagoland area, says "approximately 37 percent of the population is eligible to donate blood but less than 5 percent do."
"What happened in Orlando just highlights the fact the position the FDA is taking is outdated," says Magda Houlberg, the chief clinical officer at Howard Brown Health. "It's particularly poignant right now because people are trying to give back in the wake of the tragedy and the population that was affected the most can't give back."
That sentiment is echoed by many in Chicago's LGBTQ community. Brian Mustanski, the director of Northwestern University's Institute for Sexual and Gender Minority Health and Wellbeing—the first research institute in the U.S. to focus exclusively on LGBTQ health—and the codirector of the Third Coast Center for AIDS Research, says, "In the wake of the shooting this past weekend, many members of the LGBT community were trying to service their community, and donating blood is a really concrete way to help your community that had just been terrorized."
He points to the confusion on Twitter and other public forums where some thought the FDA had lifted its 12-month ban on male gay or bisexual blood donations, only to realize it had not.
Still, Mustanski says, "This goes into something much broader and well beyond just the blood ban."
Mustanski, Sherer, Houlberg, and Quigley don't dispute the fact that gay and bisexual men are disproportionately affected by HIV infection. The Centers for Disease Control and Prevention's recent report on the lifetime risk of an HIV diagnosis put "men on men" nationwide statistics at one in two black men, one in four Latino men, and one in 11 white men (overall an average of one in six men). The CDC says the next-most HIV-infected populations, on a national scale are women who inject drugs (one in 23), men who inject drugs (one in 36), heterosexual women (one in 241), and heterosexual men (one in 473).
In Chicago, according to AIDSVu, an interactive website that tracks HIV data via the Rollins School of Public Health at Emory University, although 80 percent of people living with an HIV diagnosis in 2012 were men and 20 percent were women, 61 percent of HIV cases in women were from heterosexual contact.
"If we really want to screen blood donors, we need to focus on people's risk factors rather than sexual orientation," Houlberg says. "Otherwise we are just perpetuating myths."
And imposing a false sense of security that heterosexual individuals won't get HIV, Sherer says.
The FDA's blood-ban policy also reinforces the notion that it's OK to ban gay and bisexual men who practice safe sex and/or who are in a monogamous relationship from donating blood, Sherer argues, while allowing heterosexuals who don't practice safe sex or who are more promiscuous to still donate blood.
Goodin says although the FDA has considered alternatives to time-based deferral criteria, such as individual risk assessment to gauge each person's chances of contracting HIV, "scientific evidence is not available to support an alternative policy."
She says evidence behind using self-reporting "presents significant issues in the U.S.," since there isn't sufficient data on the effectiveness of donor questionnaires, and self-reported data on monogamous relationships of any kind can be unreliable.
One of the reasons the FDA uses the a 12-month deferral method, she adds, is because it has been "well studied" and found to maintain the safety of the blood supply in Australia, which has HIV epidemiology and blood-screening systems similar to the United States.
What does change require?
Change never happens easily, especially when governmental agencies or big business are concerned. Quigley says one of things he's learned about the blood system since he started in Congress is how it's run largely by private blood banks, such as the Red Cross, that aren't government entities.
"It's massive, it's complicated, and it's expensive," Quigley says. He plans on meeting with other senators, as well as HHS and the FDA, to discuss how they might change the blood-donor policy while keeping the supply safe.
Among other things, that means taking a deeper dive into how and why donors answer screening applications. "If you're going to construct criteria for screened blood donations it needs to be based on something directly related to the actual risks, not the perceived risks," Houlberg says.
Even though donors are given anonymity, it's still up to them to reveal their personal histories, including their sexual orientation, the number of partners they've had, if they've had unsafe sex or an extramarital affair, or if they are a drug user.
"We need to fully understand how people complete these questionnaires," Quigley says. "Why do they answer the way they answer and if they answering truthfully."
Even though the events of last weekend have created a local and national dialogue, as many Chicagoans have searched for connection and community, it will likely take a while to find an alternative solution for blood donation.
"It's going to take time to change the public's mind," Sherer says. "People have this association of HIV and the gay community, but the science and technology have helped us enormously and can help us to move away from discriminatory practices that aren't necessary."
"If we end this discriminatory policy and if we increase the blood supply," Quigley adds. "Then those are at least two of the things that can come out of this tragedy that are worthwhile."