How donation-deferral rules originated
In an email, a Food and Drug Administration spokeswoman said, “The FDA is responsible for protecting the public health by ensuring the safety of the blood supply, which depends on the implementation of donor screening measures that are based on available scientific evidence.”
The FDA policy was initiated after the emergence of AIDS in the early 1980s. When the epidemic first became known, health officials documented transmission between men who have sex with men. Before it was called AIDS, it was called gay-related immunodeficiency, because it was thought only men who had sex with men could get it. But AIDS also was soon discovered to be transmitted by blood transfusions and the infusion of clotting factor concentrates in hemophiliacs. Health officials also discovered transmission was possible through heterosexual intercourse and intravenous drug use.
In 1983, the FDA initiated the first blood donor deferral policy based on the limited knowledge it had about AIDS at the time. In 1984, human immunodeficiency virus was established as the cause of AIDS. But before the virus was identified, and prior to the approval of tests for HIV in 1985, thousands of blood-donation recipients became infected. So in 1985, the FDA restricted men who have sex with men and people engaging in sex work and intravenous drug use from donating blood indefinitely.
Even though much progress has been made on HIV prevention and treatment, Halkitis said the stigma surrounding the virus still exists.
“We react to HIV from a place that’s driven by fear and irrational thoughts, and not necessarily science. And I do think the other thing at play here is an ongoing stigma and discrimation against HIV-positive people — but also against sexual and gender minority men and women in this country,” he said.
Dr. Perry N. Halkitis, dean of the Rutgers School of Public Health, is known for his research on the health of LGBTQ populations with an emphasis on HIV/AIDS, substance use, and mental health. (Courtesy of Rutgers School of Public Health)
“It’s a perpetuation of that stigma that manifests in many marginalized populations in our society — whether you’re Black, or Black and gay, or trans and Asian — any marginalized group continues to experience this stigma. And very often, laws and policies are put in place that continue to perpetuate that stigma,” Halkitis said. “State-sanctioned discrimination is one of the biggest problems we have in equalizing the playing field for individuals from marginalized groups like LGBT people, and specifically in this instance gay men.”
Morrison said current blood donor policies reflect the stigma he faced in the 1990s.
“In the ’90s, when I would come out, you know, you do your coming out and all that, and people are like, ‘Oh, you’re gay, you better watch out for AIDS.’ I’m like, ‘You better watch out for AIDS, Mary. What are you talking about? We all have to watch out for AIDS,’” he said.
“It all comes back to this stigma of AIDS being a ‘gay virus.’ They want to get these [coronavirus] antibodies, so why wouldn’t you come to gay people? We take the best care of ourselves, more than anyone else on the planet,” Morrison said.
At the end of 2018, an estimated 1.2 million people in the United States had HIV, including an estimated 161,800 people as yet undiagnosed, according to the Centers for Disease Control and Prevention. Of the new diagnoses that year, 69% were among men who have sex witth men. However, HIV diagnoses among gay and bisexual men decreased overall by 7% between 2014 and 2018.
HIV diagnoses among straight people also decreased by 10%, the CDC says. However, rates of transmission among those who use intravenous drugs increased by 9%. After men who have sex with men, straight Black women were the group most diagnosed with HIV in 2018.
“[Straight] Black women, who are one of the groups overwhelmingly burdened by HIV, can donate blood without being questioned because they are heterosexual. Yet heterosexual transmission is never indicated as a vector and potential problem for blood donations the way MSM behavior is,” Halkitis said.
He added that the policy also reflects a false stereotype that gay men are overly promiscuous.
“And the truth is, yes, gay men constitute the largest proportion of infections in the United States, but they’re not the only group. So if you’re going to do this with one group, you should do this with all the groups, or none of the groups,” Halkitis said.
Seeley, of CAMP Rehoboth, oversees the organization’s HIV prevention programs. When he became involved in HIV testing 20 years ago, the tests required blood draws, and people waited two weeks for their results. Today, there are finger-stick and mouth-swab options that show results in 10 minutes. HIV can even be detected if someone is infected within a 14-day period.
“So much has changed in how we test for HIV that the policy and evidence should have caught up. That’s why I think this decision is based on homophobia and bad science,” he said.
In 2015, the FDA updated its guidance for blood and plasma donations, setting the one-year deferral standard. But in April of this year, the COVID-19 pandemic pushed the FDA to ease its restrictions again, to ensure that blood supplies wouldn’t be in jeopardy. As stay-at-home orders were announced across the country, thousands of blood drives were cancelled overnight, halting donations.
LGBTQ+ advocates say the loosening of donation restrictions doesn’t go far enough.
“Our nation is in a crisis right now and people need help, and this is why the FDA’s policy change is a sign of progress. But the current crisis demands that we must follow the science and have a complete and immediate end to this archaic and demeaning ban,” Fuscarino said.
Also reduced from one year to three months now because of the coronavirus pandemic are the FDA’s donation deferral periods for people who have gotten tattoos or piercings and those who have traveled to malaria-affected areas.
The blood supply is adequate today. Yet blood centers are concerned about the fall, when many school and college blood drives will be cancelled as classes remain online.
Blood Bank of Delmarva is calling on the community to donate, reporting that blood drives at high schools, colleges, businesses and other organizations used to make up about 40% of its service region’s incoming blood supply. The number of blood drives has dropped by two-thirds because of the pandemic, the blood bank reports.
Blood Bank of Delmarva asks 42 questions to screen potential donors, including ask men who have sex with men about their sex life. (Screenshot of questionaire)
The need for plasma varies across geographical regions. The University of Pennsylvania received about 220 donors for its convalescent plasma trials, which have since ended.
America’s Blood Centers, a Washington, D.C.-based advocacy organization, said its members are able to distribute plasma wherever it is needed in the country.
“The challenge is that because antibodies continue to decrease over time we have to constantly refresh our pool of convalescent plasma donors,” said the organization’s CEO, Kate Fry. “We continue to need more and more people to donate for both [blood and plasma].”
The future of donations from gay and bisexual men
To donate blood or plasma, a person must fill out a questionnaire to determine eligibility.
Men are asked if they’ve had sex with other men in the past three months. If so, they’re ineligible to donate — even though donations are tested for a whole host of infectious diseases, including HIV.
“It diminishes our lives, it diminishes our sex lives, it diminishes who we are. It is absurd and hurtful,” Halkitis said. “It is reminiscent to me of when gay men were first getting married, it was, ‘Oh, are you going to have safe sex all the time?’ Do we say that to straight people?”
“There’s a different set of rules for gay people and straight people, for Black people and white people,” he said. “It’s a perpetuation of ‘othering’ that constantly goes on. The bottom line is blood is tested, so what is the problem taking blood from a gay man?”
Blood banks also ask people if they’ve paid for or been paid for sex in the past three months, and if they’ve used needles to inject drugs or steroids not prescribed by a doctor in the past three months. But in general, straight donors are not asked for details about their sex lives. A straight person who engages in unprotected casual sex could be permitted to donate over a gay or bisexual man in a monogomous relationship.
And even if a gay or bi man has been celibate for three months, he can still be prevented from donating if he is taking PrEP, a medication that prevents HIV-negative people from becoming HIV-positive.
Matt Harker of Philadelphia received a positive COVID-19 antibody test result at the end of July, and he was interested in donating plasma.
“If I can help someone, why not? I would hope someone would help me if I had a bad case,” said Harker, 42.
Being single, he thought he might be eligible to donate since the deferral period had been shortened. But Harker didn’t know that taking PrEP would also preclude him from doing so. He likened the restrictions to “second-class citizen status.”
“It just seems so archaic,” Harker said. “If they’re willing to shorten it from a year down to three months because of an urgent circumstance, it just makes the whole thing feel very arbitrary and convenient. Why do it at all?”
Matt Harker of Philadelphia was interested in donating his COVID-19 antibodies. But he was told he could not donate because he takes PrEP. (Courtesy of Matt Harker)
A spokesman from Blood Bank of Delmarva said decisions to defer donations from people taking medications are based on a medical director’s recommendations. They take into account information from drug manufacturers suggesting that blood collected from someone taking a medication might cause an adverse reaction in a blood recipient.
The FDA is now participating in a study to investigate whether donor deferrals can be based on individual risk assessments. The pilot will enroll about 2,000 men who have sex with men and are willing to donate blood.
This study, which is being conducted at community health centers, could help the FDA determine whether a donor questionnaire based on a risk assessment would be as effective as time-based deferrals in reducing the risk of HIV. The study’s completion date is still to be determined.
A FDA spokeswoman said in an email that the agency is “committed to gathering the scientific data that can support alternative donor deferral policies that maintain a high level of blood safety.”
Blood Centers of America believes eligibility should be based on behaviors, not on sexuality, CEO Kate Fry said.
“All blood centers’ priority is to treat all potential donors with fairness, quality and respect. Our hope, as an industry, is that we can establish donor screening based on individual behaviors in the future — not based on sexual or gender identity,” she said. “We are in favor of the changes FDA has made so far, and hope they will go even further in the future once the data is there.”
CAMP Rehoboth’s Seeley agreed deferrals should be based on behavior rather than identities.
“As a straight cis[gender] person, you are more likely able to donate based on what your risk level is now over someone who says, ‘I am gay,’” he said. “That’s why you have to move to, ‘If I’m a straight person, I got tattoos from a friend that got a kit off a website, I shouldn’t be giving blood,’ or ‘If I have hired sex workers, I shouldn’t be giving blood.’ But if I’m in a monogamous relationship, I should be able to give blood because my risk is low.”
Halkitis said community activism can have some impact, “but ultimately it’s going to reside in the hands of legislators working with public health experts.”
“Very much like the decision making about opening schools around COVID or about wearing masks — science leads the way. And that’s no different from this situation here where science should lead the way. That indicates to us, ‘Hey, it’s not just gay men infected,’ ‘Hey, we’re testing the blood anyway,’ so therefore, why do we need to continue to discriminate when the overwhelming majority of gay men are not HIV-positive?”
WHYY is the leading public media station serving the Philadelphia region, including Delaware, South Jersey and Pennsylvania. This story originally appeared on WHYY.org.