Note: This story originally appeared in The Desert Sun on Dec. 1
Indio resident Nikiah Stephan has always viewed donating blood as a way to give back to his community, and because he has a rare blood type that so many desperately need, it gives him “a sense of worth to the world.”
He donated twice as a teenager and enjoyed the altruistic feeling it offered. But today, Stephan, a sexually active gay man, is no longer eligible to do so.
The Food and Drug Administration’s blood deferment policy states if a man has had sex with another man during the past three months, they must defer from blood donation. The deferment policy — which also includes recommendations for individuals who have exchanged sex for money or drugs or engaged in non-prescription injection drug use — is the FDA’s set of recommendations “for reducing the risk of Human Immunodeficiency Virus transmission by blood and blood products.” Those using pre-exposure prophylaxis (PrEP), a medication that can reduce one’s chances of getting HIV, also must wait three months after taking their last dose to donate, according to the American Red Cross.
When Stephan was a high schooler and donated blood for the first time, he was introduced to this policy, which previously had a 12-month deferment period, and before that an indefinite deferral. The pre-donation questionnaire inquired if he was a man who had sex with another man, and he answered “no” because he was not sexually active.
“It never really crossed my mind that if I answered yes to that, I wouldn’t be able to (donate),” Stephan said.
A few years later, he went to donate again, but his then-boyfriend was barred from doing so because he had been previously sexually active. Stephan recalled it was an “uncomfortable situation” and the blood bank employees “felt bad.” He went back as a medical student later on, and when asked if he had sex with another man within the last 12 months, he answered “yes.”
“The lady got up, she left the room and I was sitting there by myself for 15 minutes, and I’m like, ‘What did I do?’” Stephan recalled. When she returned, he was told he could not donate blood that day because of his sexual activity.
“I felt like crap afterwards because this is discrimination. I’m not HIV-positive, all my lab values that they were testing for were negative. Why can’t I? Just because I have sex with a man?” he continued. “A woman can have sex with 100 men in the last month and it makes no difference, and a man can have sex with 100 women in the last month and it makes no difference.”
While the deferment policy has gone through a number of changes in recent years, the hurt felt among men who have sex with men (MSM) is still there. It also impacts blood supplies in communities with higher LGBTQ+ populations, including the Coachella Valley and Southern California, which have reached critical shortages during the COVID-19 pandemic.
But change may be on the horizon as health care professionals and politicians have expressed a desire to do away with the blanket policy and instead focus on individual risk factors.
Policy history
Human immunodeficiency virus, more commonly referred to as HIV, is a virus that attacks cells that help the body fight infections. If left untreated, it can lead to AIDS, or acquired immunodeficiency syndrome.
On June 5, 1981, the Centers for Disease Control and Prevention reported on the first five cases of what would be known as AIDS.
Rare lung infections and an aggressive cancer called Kaposi’s sarcoma first began to show among MSM in 1981, and by the end of the year, there were 270 reported cases of severe immune deficiency among MSM. The following year, more cases appeared among MSM in Southern California, which suggested the illness was sexual, leading to the name “gay-related immune deficiency.” Cases also surfaced among those who inject drugs, hemophiliacs and Haitians.
Today, it is widely understood that the virus can be spread to all individuals, though some are still at higher risk of infection. Unprotected anal sex is the riskiest type of sex for getting or transmitting HIV. It can also be spread by unprotected vaginal sex or sharing needles or syringes with an HIV-positive partner.
Over the years, however, blood donation deferment policies have remained, mainly targeting MSM.
The policy was enacted in March 1983 when the Office of Biologics issued non-mandatory guidelines recommending members of groups at “increased risk for AIDS” refrain from donating blood, according to a DePaul University Journal of Health Care Law article. The first guidelines only pertained to gay men who were currently sexually active with multiple partners, had “overt symptoms of immune deficiency” or had previously engaged in sexual relations with people who had or exhibited symptoms.
At the time, there was no antibody screening test designed to detect HIV. Anthony Velasco, a senior nurse practitioner specialist at DAP Health ― a health center that provides resources to, among others, those living with HIV or AIDS ― said there was “a lot of political pressure” at the time, and many politicians wanted to “prohibit high-risk people from donating blood.” Additionally, several states still criminalized sex between two consenting same-sex adults.
“There was a lot of homophobia at that time, which I think influenced the policies that were being made,” Velasco said.
The policy underwent numerous revisions since its introduction, and eventually said that MSM could donate if they weren’t sexually active with multiple partners and did not show symptoms of immune deficiency. The first HIV antibody test was developed in 1985. But beginning in 1986, a revised policy started excluding men who’d had sex with another man one or more times since 1977, according to the same DePaul University article. Then, in 1992, the FDA issued mandatory guidelines recommending a lifetime deferral for gay male donors.
Over the years, donor educational material, specific deferral questions and advances in HIV donor testing reduced the risk of HIV transmission from blood transfusion from about 1 in 2,500 units prior to HIV testing to an estimated risk of 1 in 1.47 million transfusions, according to the FDA. But it wasn’t until December 2015 that the indefinite deferral was changed to a 12-month deferral period for MSM. Australia moved to a 12-month deferral period in 2000, while the United Kingdom implemented the change in 2011.
“Data from the two years following effective implementation of the 12-month donor deferral criteria for MSM comparing the rates of HIV in those donating blood indicate that there has been no increase in risk to the blood supply from the change that was made,” an FDA report states.
Blood donations are tested for multiple disease markers, including hepatitis B and C, syphilis and HIV. The frequency of detecting HIV-1 in a blood donor is about 1 per 33,000 donations screened, and the per-unit risk of HIV-1 infection through blood transfusion is less than 1 per 2 million units screened, according to the American Red Cross. Detecting HIV-2 in a blood donor is extremely rare at 1 per 57 million donations, with only five infected donors ever identified since HIV-2 screening began in 1992.
During the height of the COVID-19 pandemic, the United States faced a significant drop in its blood supply, according to the FDA. In April 2020, the FDA reduced the 12-month deferral policy to three months as a way to “help to address” the shortage.
On today’s pre-donation questionnaire, male donors are asked, “In the past 3 months have you had sexual contact with another male?” and female donors are asked, “In the past 3 months have you had sexual contact with a male who had sexual contact with another male in the past 3 months?”
But many MSM are still ineligible to donate blood, and if they are, they feel like they’ve been discriminated against far too long and don’t want to donate as long as any deferral policy is in place.
‘Am I only good when I’m dead?’
Growing up in the ’80s and ’90s in the South at the height of the HIV/AIDS epidemic, Justin Fontenot remembers the stigma that was attached to homosexuality.
He distinctly remembers media coverage of Ryan White, a 13-year-old hemophiliac (a bleeding disorder in which blood does not clot properly) who was diagnosed with AIDS after a blood transfusion in December 1984. The young boy was barred from returning to his school, and he and his mother fought to educate the public on HIV and get him back in a classroom. White died in April 1990, one month before his high school graduation.
Fontenot described his younger self as a “feminine-presenting gay boy” who was “constantly misgendered and physically and sexually abused in the school system.” Seeing White go through his own struggles due to his HIV diagnosis was “so traumatizing for our community,” Fontenot said.
More than 30 years later, Fontenot, who has collaborated with Velasco on the topic, can’t believe that blood donation policies aimed at LGBTQ+ individuals are still in place.
“We have come a long way in the science of understanding blood-borne diseases, we’ve come a long way in our knowledge of treating and eliminating HIV,” Fontenot said. “It’s interesting how there is still almost the same stigma from 1990.”
Many, though, are not aware of the deferment policy. Fontenot, an assistant professor of nursing at the University of Louisiana at Lafayette, was able to show a group of students its effects during a blood drive on campus.
Fontenot and a group of students were headed to lunch when they were encouraged to donate blood. One of the blood drive employees asked him if he’d be interested in donating, and Fontenot recalled saying, “I would certainly be interested … but I know that I’ll be screened out.” When the employee questioned his response, Fontenot suggested that the employee ask him the screening questions.
When asked if he was sexually active, Fontenot said yes, and that he was married to a man. He even offered to show the employee his most recent negative HIV test result. The questions ended. Fontenot recalled the employee said, “I’m sorry, this is ridiculous” about the policy.
“He doesn’t encounter many people who get screened out because they are a male who sleeps with another male, and the reason why is because the gay community knows better,” he said. “We just don’t go and do it because it’s a waste of our time. Unless we’re abstinent people, we’re going to be screened out.”
The experience “was a good eyeopener” for his students, who are mostly female and can donate blood, Fontenot said, but it still hurt.
“We want to give back to our community, not just the LGBTQ community, but the community that we live in and surround,” Fontenot said. “One of the ways you can demoralize us the best is by rejecting us from being part of that community and that donation.”
Back in December 2020, Velasco tweeted, “When will my gay blood be good enough for the American @RedCross?” Like many others, he has wanted to donate, but has not had the courage to because if he was turned away, it would be “very traumatizing for me.”
Peers have suggested that he should just lie in order to donate, but Velasco said that entirely misses the point.
“People want to donate blood and do it in a credible manner. People should not have to ‘lie,’” he said. “We shouldn’t have had those barriers to begin with.”
He noted that there is no ban on who can be an organ donor. HIV.gov states anyone can sign up to become an organ donor, regardless of health conditions and HIV status, and all organs are routinely screened for HIV, other infections and cancers. Representatives from a local organ procurement organization, transplant hospital teams and recipients on the waiting list determine whether potential organs, as they become available, are suitable for transplantation.
“It made me think, why are people not accepting my blood when I’m living? Am I only good when I’m dead?” Velasco pondered.
Palm Springs resident Jacob Rostovsky, a trans man, has also never been able to donate blood. In the past, he said he was “automatically turned away” from donating because he is trans and wasn’t even asked if he was sexually active with other men.
“They never got past asking me if I was attracted to men, they were like, ‘Oh, you’re trans, there must be something wrong with your blood,’ and I’m like, ‘No, it’s the same,’” he recalled.
That rejection hurt, he said, because he wanted to help his community. He was even willing to confront his fear of needles to do so.
Rostovsky said the policy also bars people, often those who need it most, from economic opportunities. Sometimes blood centers offer incentives, such as gift cards or coupons, to encourage donations. That could be “income for a population that is so low on the socioeconomic scale, and yet they’re not even offered the opportunity,” he said.
Rostovsky doesn’t believe a deferment policy will ever go away in his lifetime, but if it did, he “definitely would” donate blood, as long as he could muster up the courage. Having that opportunity would mean it’s just a way of life for him and many others.
“It just means I am average, I am a human,” Rostovsky said. “I’m not going to jump off the rooftop and celebrate, but it’s another thing that I can do that I couldn’t do before.”
‘Very altruistic population’
Blood shortages were brought to the national forefront this year when the American Red Cross declared its first-ever blood crisis during the COVID-19 omicron variant surge.
In the Coachella Valley, LifeStream Blood Bank, which provides blood products and services to more than 80 Southern California hospitals, has also faced critical supply levels over the years. Currently, the center has about a 2.8-day supply of blood on hand, but the upcoming holiday season is always one of the toughest periods for blood collection, said spokesperson Dina Colunga. Ideally, there should be a three- to five-day supply available.
LifeStream President/CEO and Medical Director Dr. Rick Axelrod believes one detriment to those levels locally is that MSM are not freely able to donate blood.
At the beginning of his career in the late 1980s, Axelrod worked at Cedars-Sinai Medical Center in Los Angeles, where he said one-third of blood donors were MSM. Once the AIDS crisis occurred and mandated blood donation policies were implemented, the donor program lost a “very altruistic population that was helping us take care of patients in the community,” Axelrod said. Blood shortages followed for some time until the center was able to build up its donor base to replace all those it had lost.
The height of the COVID-19 pandemic also brought many challenges for blood banks because people were afraid of getting sick while donating. As more infections occurred in the community, that also limited the donation pool as people needed to be fully recovered from COVID-19 and symptom-free for at least 10 days before donating.
If MSM were more freely able to donate blood, “it would be a tremendous value to LifeStream,” Axelrod said, especially given the Coachella Valley’s large LGBTQ+ population. He got a hint of what could be possible after the FDA shortened its deferral policy to three months during the height of the pandemic. Because most single people were likely not engaging in sexual relationships during the time, Axelrod said the blood center reached out to the LGBTQ+ community and informed them of the shortened period. Single MSM who had not donated in years, maybe ever, were able to give back to their community. Axelrod did not have the exact number of donors available.
LifeStream, along with several other independent community blood centers that make up the national organization America’s Blood Centers, have been lobbying the FDA to update its blood donation policy. Now it’s time to base questions on the risk of sexual activity that people are engaging in, Axelrod said, not just who they are engaging in sexual contact with.
“It doesn’t matter whether you’re homosexual or heterosexual, if you’re engaging in unprotected anal intercourse, your risk of getting HIV from someone who is infected is much higher than anybody else,” Axelrod said.
Focusing on individual risk factors is also being considered at the federal level. The ADVANCE (Assessing Donor Variability And New Concepts in Eligibility) Study, a pilot study conducted by three of the nation’s largest blood centers and funded by the FDA, took place between December 2020 and September 2022 to determine if a blood donor history questionnaire based on individual risk would be as effective as a time-based deferral in reducing the risk of HIV among MSM who want to donate blood.
The ADVANCE Study included gay and bisexual men from eight metropolitan areas, including Los Angeles and San Francisco, interested in donating blood and who have had sex with at least one other man in the three months before joining the study. Participants, between the ages of 18 and 39, completed a questionnaire designed to determine individual HIV risk factors and had blood samples taken that will be tested for HIV and anti-retroviral drugs found in PrEP.
Enrollment concluded on Sept. 30. Researchers from the participating blood centers — Vitalant, OneBlood and the American Red Cross — will complete their work by the end of the year and forward information to the FDA.
If the scientific evidence supports the use of the additional individual risk questions, it could mean changes in the blood donation policy for MSM in the future. If successful, Axelrod said blood centers would most likely have to change questions that are used on the donor history questionnaire.
Other countries have made similar changes. Earlier this year, Health Canada approved Canadian Blood Services’ submission to remove a three-month deferral period for sexually active MSM and use sexual behavior-based screening criteria for all donors, regardless of gender or sexual orientation. Now, all those who want to donate are asked if they’ve had new and/or multiple sexual partners in the last three months. If they have, they are asked a follow-up question about whether they’ve had anal sex with any partner in the last three months. If someone answers yes, they will be required to wait three months before donating.
The authorization was based on a thorough assessment of evidence supporting the safety of the revised donor screening, according to statement from Health Canada. The Canadian Blood Services used risk modeling to estimate the residual HIV risk among blood donation. The estimated risk would change from 1 per 25.9 million donations to 1 per 20.7 million donations with the new screening criteria based on sexual behaviors.
“The overall very low risk with the proposed screening criteria (1 per 20.7 million donations) indicates that the change in risk following blood transfusion is in reality not meaningful or significant and will remain very low,” a statement from Health Canada reads.
Additionally, the National Health Service in 2021 announced MSM who have had the same partner for three months or more are able to give blood in England, Scotland and Wales.
Opening up opportunities for more donors trickles down to helping more people in communities, which is particularly seen in health care settings.
Dr. Joline Abrahams, medical director of clinical laboratory services and pathology at Desert Regional Medical Center in Palm Springs, said the hospital depends on a stable blood supply in order to treat trauma and labor and delivery patients on a daily basis. A busy day could involve 50 to 100 units of packed red blood cells. The desert hospital, also a level II trauma center, services a very large area as well, from the Arizona border to Loma Linda, Abrahams said.
As of mid-November, the blood supply was good, but upcoming three-day weekends and the holiday season could result in more blood needed. When supplies are not available, health care providers are forced to look at individual cases and determine the critical need in order to conserve units.
Speaking about the ADVANCE study and the possibility for change in the blood deferment policy, Abrahams called it a “good step” and a necessary move in the right direction.
“I’m hoping that they (the LGBTQ community) take this as a positive movement and reinforcement and actually support it, and I think they will,” Abrahams said. “I’ve spoken to quite a few of my friends and they are willing to give blood, they just need to know when and where.”
Hopes and fears for the future
Support from federal leaders has also gained steam to make changes to blood donation policies.
In a Feb. 22 letter addressed to FDA Commissioner Dr. Robert M. Califf, members of Congress urged the FDA to end the blanket three-month blood donation deferral period for MSM and transition to an individual risk assessment to determine donor eligibility.
“The existence of any deferral period tied to MSM further stigmatizes HIV/AIDS as a ‘gay disease’ and members of the LGBTQI+ community as ‘unclean,’” the letter read. “Sexual contact between two men is not listed as a risk factor for HIV/AIDS by the Centers for Disease Control and Prevention or the World Health Organization, yet the FDA directs any male donors with a ‘history in the past three months of sex with another man’ to defer donation for three months. This policy uses sexual contact between two men as a proxy for unsafe sex that is likely to contaminate the blood supply. This inaccurate association contributes to homophobia, not a safe blood supply.”
U.S. Rep. Dr. Raul Ruiz, a Democrat whose district includes the Coachella Valley, did not sign the letter. But Ruiz said in an interview with The Desert Sun that he believes the blanket policy should be removed and has advocated for change for years.
Back in June 2016, Ruiz was among several Congress members who signed a previous letter to Califf urging for the end of the MSM deferment policy. At the time, MSM had to wait 12 months from their last sexual encounter to donate blood. Congress members wrote that the policy, which was a significant improvement from the lifetime ban, still “furthers a stigma,” and the FDA questionnaire “should reflect risk-based behaviors as opposed to sexual orientation.”
The letter was sent following the Pulse nightclub shooting in Orlando, Florida, where 49 people were killed and 53 were wounded at the LGBTQ establishment.
Ruiz also cosponsored a bill introduced in the House of Representatives in 2021 that states blood donation policies should be grounded in science, minimize deferral periods and allow donations by all those who can safely make them.
“We need to eliminate the policy. It is not consistent with science,” Ruiz said, a member of the Congressional HIV/AIDS Caucus and Congressional LGBTQ+ Equality Caucus. “It is still based on a culture of fear and misunderstanding of HIV, and it also singles out gay men in a discriminatory way.”
“This also has a social-historical component in the well-being and mental health of the LGBTQ+ community who have historically faced systemic discrimination and barriers to simply be themselves,” he continued. “This lingering policy is another reminder, another barrier, another testament, another slap in the face, telling them that you’re the ‘other.’”
Eliminating the policy would not only benefit all residents by providing them access to lifesaving blood products, Ruiz said, but also help reduce stigma against HIV and AIDS, fight against targeted discrimination and reach “a better society where all can be themselves in our communities.”
With the possibility of change on the horizon, those who are hopeful of the future are also fearful of what it could bring, mainly with misinformation or further retribution against the LGBTQ+ community.
During a global monkeypox outbreak earlier this year, MSM were among those at highest risk of contracting the virus, although it could be spread to anyone. Many compared the stigma and frustrations that they faced during the outbreak with low vaccine supply and slow government response to what was seen during the height of the AIDS crisis in the 1980s and 1990s.
Fontenot also pointed to the wildfire spread of misinformation surrounding COVID-19 and how politicized the health issue became. He fears that if the “wrong people” find out about possible changes to the blood donation policy, the same will happen.
“COVID wasn’t anything political, and being gay shouldn’t be either, but we know … there’s going to be that injection of fear with misinformation,” he said. “What people really need to understand is that the pandemic fueled the blood shortage, and this is an issue that actually could help and not harm people, but I’m just afraid of what blatant hemophobia is going to do in this situation.”
Velasco, who also has similar fears, said he is planning on tackling misinformation by getting the word out about any changes that take place and answering people’s questions. He, Fontenot and Amanda Golino, a critical care clinical nurse specialist, even authored a piece on MSM blood donation restrictions and called for their end in the American Journal of Nursing.
Velasco also hopes others join in the fight.
“This is not an LGBTQ+ issue, it’s an issue that affects all of us. It shouldn’t just be led by LGBTQ+ people,” Velasco said. “Allies all have the capacity and strength to really help us in moving this movement in getting rid of this ban.”
Ema Sasic 
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