#4: The Blood Ban
COMMUNITY VOICE: Lukus Estok | HEALTHCARE EXPERTS: Waseem Anani MD, Hector Vargas JD | COMMUNITY REVIEWER: Jeremy Allen
SHOW NOTES
History of the Blood Ban: A summary timeline
1981: first patients with HIV described in the medical literature
1983: Test for HIV arrives; 1986: FDA institutes blood donation ban for gay and bisexual men
1997: FDA changes langage from lifetime ban to “indefinitely deferred” (we’re underwhelmed by that too…)
2014: FDA changed the policies to a 12 month deferral, which is an actual deferral. So no sex for one year to give blood. The FDA’s reasoning here.
You’re talking about blood but you keep saying plasma?
Fair point.
Blood has two main components. Plasma is the watery part that also has some blood borne diseases and carries antibodies.
This information applies to any type of blood or plasma donation.
What’s the risk of getting HIV from a blood transfusion?
Same risk as getting into a plane (that crashes) or getting hit by lightning in a thunderstorm (stay inside folks!)
Some numbers: risk estimates range from:
1 in 2,135,000 (the higher estimate)
1 in 909,000 – 5,500,000 (the lower estimate)
What’s a scientifically-based (i.e. non-discriminatory) way of stratifying risky candidates for blood donation?
Advocacy orgs: like behavior should be treated alike
Meaning: those screening for blood-borne illnesses should use individualized risk assessment on questionnaires
Meaning: don’t equate gay and bisexual men and “risky sex”, anyone who has penetrative rectal intercourse (ie the behavior) should be asked about it
Meaning: identity is not a scientific substitute for health behaviors, thinking so sets you up for discrimination and stigma
Public service announcement: oral sex, aka blow jobs, aka head - very low risk for HIV (<1% per the CDC, “theoretical” to others) - should not be considered a behavior for which to defer blood donation.
Advocates want a three month deferral for gay and bisexual men - where does that number come from?
Window period! AKA the amount of time it takes for the test to be able to detect the virus once it's inside someone's body.
Explain! There is a lag time between when the virus enters someone's blood to when it has copied itself enough to be detected by medical testing.
The most up to date testing can see HIV in someone’s blood 5 to 11 days after acquisition.
Q: So….why three months if the test works in about a week?
A: HIV isn't the only thing we test for. And testing exactly at the threshold of our best test is cutting it too close for the regulatory agencies.
Reminder: U=U applies to sexual practices - not to blood donations.
Questioning Questionnaires
It is discriminatory that the questionnaire considers an identity the same thing as a behavior. It sees gay and bisexual identity as the same thing as engaging in anal intercourse. (Just ask high school Sam - not true!)
Another nuance: many gay and bisexual men who don't have anal sex (again, see Sam in high school) and are at less risk than their heterosexual colleagues when giving blood.
What's going on about this: The FDA is (slowly) studying implementing a questionnaire that includes individualized risk assessment and making sure this keeps the blood supply safe.
HURRY UP FDA! Well, Dr. Anani said it best: “It's not their job to consider the feelings of others. It's their job to protect the blood supply. So from their perspective, to hell with the feelings.”
For now...#FeelingsHurt, the future goal being to ask specific questions respectfully to make blood donation and transfusion safe, less biased and less discriminatory.
So is the blood bank going to start calling me when this is all changed?
Not anytime soon.
The FDA doesn't make changes without data behind it
Studying this data - meaning studying how well screening questions that ask about specific individual sexual behaviors work - is going to take a really long time.
Another reason this will take a while: blood centers don't want to scare away straight donors with invasive questions about butt sex.
Q: Is that a discriminatory double standard that favors straight people at the risk of stigmatizing queer people donating blood?
A: YES!
A non-discriminatory future of blood donation looks like:
A three month deferral period. Meaning - anyone who has anal intercourse would have to wait three months from that to give blood.
Why 3 months?
This accounts for emerging new diseases that could get into the blood supply that we may not know about
We test for more than HIV - so while HIV tests are good 6 weeks back, going by that timeframe doesn’t cut it.
TRANSCRIPT
Lukus: They asked if I had ever donated blood before and I told them I hadn't really been able to donate since I was 18. And I was excited about it and a little nervous about the process and the immediate response back was “why haven't you donated back? Why haven't you been able to donate”? And I just sort of casually offered “I'm a gay man”. And the moment I said that the look in the eyes of the person I was speaking with changed, um, they went cold and I was immediately told, well, you will not be donating today.
[QHP THEME MUSIC]
Sam: Welcome to Queer Health Podcast, a podcast about, well, exactly what it sounds like. My name is Sam. I use he/him pronouns. And I’m an internal medicine/primary care resident in New York.
Gaby: I'm Gaby. My pronouns are she/her and as always, same job title.
Richard: And I'm Richard Greene, the medical director at the Pride Health Center at Bellevue Hospital in New York City. And my pronouns are he and him.
Gaby: You're listening to season one, episode four, the FDA blood ban. Today, we're going to be talking about a topic that some of you might know as the FDA's blood ban for gay men, it's gone by different names in the past. Previously, it was known as the blood ban when it was a lifetime ban, but technically now it's been changed to a year long deferral period in 2014.
Richard: But before we get started, a little bit on why this is such a crucial issue. The importance of blood donation cannot be underestimated. Blood donations provide a resource that is often life saving on top of that blood banks too often run low on donations supplies
Gaby: All of which makes me want to ask, why are we restricting people from giving blood in the first place?
Richard: The question of the hour. The answer is rooted in the AIDS epidemic and the risks that comes with being HIV positive and donating blood. But along the way, the scientific logic around this gets a little warped into a policy that's really discriminatory.
Sam: Lukus Estok, who you heard from at the beginning of this episode, has a story that really contextualizes how these discriminatory policies are alive and well, too well, in 2020. We found Lukus after he recently tried to donate plasma as someone who had recovered from COVID-19.
Gaby: And before I let Lukus introduce himself, just a bit of lingo to translate. Plasma is the watery part of the blood where antibodies hang out. Okay, back to Lukus.
Lukus: My name is Lukus Estock. My pronouns are he/him. I'm 36 years old. I grew up in Wisconsin, but my home is in New York city and has been for about half of my life. I kind of enter the world through the restaurant industry and more recently through a bit of advocacy I found myself in.
Sam: Lukus's story donating blood begins long before COVID.
Lukus: So my experience giving blood as a gay man really started before I even fully understood my identity as being gay. And it was my senior year of high school. They were doing a blood drive and I was invited to participate along with the rest of eligible, uh, you know, 18 year old students. I remember filling out the form and getting to a question, which at the time was, you know, whether as a man, you slept with another man. You know, answering yes to that question at the time meant a lifetime ban on donation. And though I was not sexually active at that time. I remember seeing it being confronted with it and thinking, “oh boy, like what, what am I potentially getting myself into a life of?”
Sam: I was shook when he told me that because it literally reads like an entry from the high school diary of me and so many of my gay peers – a diary that may or may not still be on my bookshelf. But the idea that the screening question is the first encounter with having medicine stigmatize gay identity.
Gaby: I think the most striking part of all of this is that Lukus wasn't even sexually active at the time of that questionnaire. Which means that really, really early on, he's seeing other people talk about a gay male identity as something inherently sick or unhealthy, something that needed to be screened for on a health form.
Lukus: Once I became sexually active, which for me, you know, was, was later that year, that was it for me. I've never donated again. I've never been under the impression that I, you know, it was going to be something that I could do. I know that a few years ago they lowered the deferral from a lifetime ban to a 12 month ban if you hadn’t been sexually active, but it didn't feel like that was ever going to apply to me either.
Sam: The policy Lukus is talking about is an FDA regulation. It requires certain groups of people to defer or delay blood donations based on their sexual activity. And Lukus of course is right. It did decrease from a lifetime ban to a 12 month ban. And then in April 2020 it decreased again from 12 months to three months.
Gaby: Okay, so: who is included in that ban?
Sam: It includes men who have sex with men. A group we are going to call gay and bisexual men throughout this episode. The new three month policy that was passed in April 2020 also includes someone who identifies as female who had sex with a man who had sex with another man.
Gaby: Ooh. This is very biblical, like, and he got this person who got this person.
Sam: But the FDA also death protest, and it differs people who had sex with someone who is HIV positive, who uses IV drugs or exchanges sex for money or drugs.
Gaby: Okay. That's less biblical now.
Sam: Yeah. But if you had syphilis or gonorrhea, you also have to wait until three months after you've been treated.
Richard: For a deeper history of this – and the pushback against the ban, we spoke to the executive director of GLMA.
Hector: My name is Hector Vargas. I'm the executive director of GLMA: Health Professionals Advancing LGBTQ Equality. GLMA is a national association of LGBTQ health professionals of all disciplines and their allies who are working for health equity for the LGBTQ community and equality for LGBTQ health professionals in their work and learning environments.
Gaby: Okay. So I think it's safe to say that blood policy is in GLMA’s wheelhouse.
Hector: Around 1983, there was a lot of concern about blood donation and not yet any official pronouncements from the FDA about blood donation and then gay men. But GLMA was seeing the handwriting on the wall that there was potentially efforts to single out gay men for questions that would come up in the blood donation process. And, you know, asking specifically about whether people were part of the gay community and really at the time we're talking about gay men. And GLMA was instrumental in saying, “No, we should not single out gay men for these questions. It's an invasion of privacy and stigmatizing.”
Richard: Keep in mind that HIV was newly discovered at this time. And there was very little scientific knowledge on it. There was no test for it and not everyone even really agreed it was caused by a virus. And no one knew how it was spread.
Gaby: So the ban - which to be clear at that time was actually called a ban and not a deferral - was implemented in 1986. And in 1997, over 10 years later, the FDA changed the language from lifetime ban to indefinitely deferred.
Sam: I can only imagine the robust applause at that lovely turn of phrase.
Richard: I'm seeing lots of people in suits giving each other celebratory handshakes and high fives.
Gaby: So after the deferral language changed in 1997, things were stagnant until 2014. And it was at this point that the FDA changed the policies to a 12 month deferral, which is an actual deferral. And what that broke down to is if it's been a year since you had sex, you were then eligible to donate blood or plasma.
Hector: Many of us in the advocacy community saw this as a good first step. It still essentially resulted in a lifetime ban for most gay and bisexual men. It would mean that gay and bisexual men would have to be abstinent for a year before they could donate blood. And that is still unacceptable. It still singles out gay and bisexual men for specific, at risk conduct, which is, again, discriminatory and stigmatizing
Gaby: And that's what Lukus was saying. How he had heard the policy changed in 2014, but it really didn't make a difference.
Sam: Correct. Because even if you aren't the most sexually active, it takes one, well, just one of having “the sex” once a year.
Richard: And actually the question asks about any sexual contact and doesn't specify anal sex.
Sam: Brief public service announcement. Blow jobs, giving head, fellatio, whatever you call it: it does not transmit HIV.
Richard: And that doesn't suck.
Gaby: But what does blow is these FDA screening questions because they're jumping straight from sexual identity to risk of transmission without actually assessing whether any high risk sexual behavior is going on, which stigmatizes any kind of sexual contact between men.
Sam: And what GLMA and other advocacy orgs have always been saying is, well I'm ahead of myself. Let's let Hector say it.
Hector: Like behavior should be treated alike. The essence of that is an individualized risk assessment for all potential blood donors, regardless of your sexual orientation or gender identity. The FDA should really focus on what the CDC says is the highest risk behaviors. So certainly receptive anal intercourse would be a risk behavior that should be asked about and an individualized risk assessment. You know, oral sex receptive or insertive is very low risk and likely should not be considered in a deferral for blood donation.
Richard: So, what we're talking about here is the difference between identity, how someone perceives themselves, and their behavior, which is what really carries risk.
Sam: In other words, if you have a butt where a penis has been, that's what should be asked. Let's check in with Lukus.
Lukus: My understanding is that that deferral comes from, uh, a real place. It came from a real concern and fear. From my understanding, medical professionals are telling the FDA and telling people that the data we have makes it clear that individual risk-based assessments are a far more reliable way for us to determine donor eligibility than using an outdated stigma-based, fear-based approach that washes an entire part of our culture with one broad brush and says you can't donate because you are dirty.
Richard: Lukus understands that there's a real concern about HIV in the blood supply, but he also understands that gay and bisexual men seem to have a higher level of scrutiny than straight people who may be engaging in the same behavior that the FDA is concerned about.
Gaby: And again, the behavior, which in this case is butt sex, is not what's being focused on. Instead it's labels, in this case gay or bi, that are getting all the attention.
Richard: To get some of our more technical questions answered about what the science does right and where the science goes wrong, we spoke to pathologist who has additional medical training in blood transfusion safety and protocols.
Sam: And I haven't watched Grey's Anatomy. And I don't know if there's any sexy pathologist on it, but just to clarify, a pathologist is someone who deals with laboratory tests, they do autopsies, and they're really the expert when it comes to knowing how we do tests and medicine and what the tests mean and don't mean.
Waseem: I am Waseem Anani. I am a pathologist that works at Canadian Blood Services. And one of my main jobs is to protect the blood supply and also maintain its safety for people that need to get blood. And also the safety of donors, making sure that they are safe to donate as well.
Sam: Okay so let's answer one of the upfront questions. What is the actual risk of getting a virus like HIV or something like Hepatitis C if you are someone who receives a donated blood product.
Waseem: If you were willing to get into a plane or walk outside in the thunderstorm, you should feel safe getting blood because the risk of your plane falling out of the sky or you getting struck by lightning is the same risk of you getting HCV or HIV from a blood product.
Sam: We ask him to outline the steps that are taken to ensure everything is safe when blood is donated.
Waseem: One of the goals of a transfusion medicine doctor is to maintain the safety of the blood supply. It's like our number one goal. We can't introduce any additional risk. The FDA considers any additional risk to be a no go, no matter what. It's a nonstarter for them.
Gaby: We got Waseem talking a little bit about the process of vetting blood for donation and he described how when folks donate there's actually a few tubes drawn off for testing for a handful of different infectious diseases, not just HIV.
Waseem: The most common ones that people know about are Hepatitis, HIV, West Nile, Zika. So there's a lot that kind of goes into it on the back end once a donor gives blood in order to make sure that it's safe. So it's not just a risk-based assessment with the questions. We actually do testing on top of it.
Sam: So why even ask people about risk behaviors? Iif everything is getting tested anyway does it really change anything if all the tests get tested the same way?
Gaby: Yes – testing falls short in settings, like false negatives, which is probably something that a lot of people are familiar with from the Coronavirus. And the idea there is that even if the test is 99.99% accurate that 0.001 becomes somebody's reality. And so the survey is designed or is intended as a way to remove people from the donor pool who are more likely to be exposed. to hiv
Richard: If someone has a new HIV infection the virus is there and can be transmitted. But there isn't enough virus yet to flag the tests done on the blood. Waseem also spoke about how the types of tests done to check for HIV have advanced over the years and how that, in part, has played into the changes in the window period.
Gaby: And when we say window period we mean the amount of time it takes for the test to be able to detect the virus once it's inside someone's body so if you're in the window period it means that your blood test will be negative but you'll still have the virus.
Waseem: So in the initial phases, it was, you know, weeks before we would find out. So, you know, if we were doing antibody testing it was an 18 to 45 day window period before an antibody would form, because obviously you have to have the virus circulating, your immune system has to respond and form the antibody. And then when the molecular testing came about more recently, it allowed us to detect it much earlier because we could detect the actual virus, not the immune response to it. So the window period dramatically dropped once we had nucleic acid testing on board. But today, you know, people still consider that five to 11 day window period to be too risky for gay men.
Gaby: So Waseem mentioned two kinds of testing here, and I want to clarify what they are. So when he says nucleic acid testing, he means doing a test that assesses for the genetic material of the virus itself. And this test makes it a lot easier to detect infection earlier on. In turn, antibody testing refers to looking for the body's own immune response to the virus. Now that immune response takes a longer time to form. And it's why antibody tests aren't as good at detecting infection early on.
Sam: HIV is a really stigmatizing topic, and so we want to be clear that we're referring to HIV risk from blood donations here. For people who are living with HIV and have an undetectable viral load, the virus is untransmitable during sex. This has been popularized by the slogan U=U, or undetectable equals untransmittable.
Richard: The same can't be said for the blood supply. So while sex might not be able to pass it on, if you're taking someone's blood, there's still a possibility even someone with a controlled viral load can pass on the virus through blood transfusion.
Gaby: So TL;DR, U equals U applies to sexual practices, but it doesn't apply to blood donations.
Sam: So let me crunch the numbers. If the current HIV test takes about five to 11 days before it works as best as it can because of the window period, why is the HIV blood ban three months?
Richard: So HIV isn't the only thing we test for and having testing exactly at the threshold of our best test is cutting it a little too close for the FDA and likely for many blood banks.
Gaby: Right, but this isn't just an issue of testing and blood tests. It has to do with the surveys themselves. They're not perfect tools. Sometimes people don't understand the surveys or misinterpret the questions. And that can be a problem. Even if we got the questionnaires to be crystal clear, no misunderstanding there are still some people who will lie on them.
Waseem: They actually surveyed people, and some of that came out of the US from New Orleans and the San Francisco area where they said the deferral is one year now, have you donated blood? And this was all anonymous. A number of people said yes. And they said, okay, well, were you abstinent for a year? And they said, “no, we lied”.
We’re in a monogamous relationship. I felt comfortable. And we were fine. So we know that people are lying and they're donating, right. And nothing has been caught. Now, granted, that's not really a good argument, but we know that it's happening.
Sam: I want to take a quick diversion of something Waseem said because it is - dramatic.
Waseem: We also know, especially in high school and this is more anecdotal, we have young men who are not out yet and are afraid to come out. You know, all their friends they're going to donate so they can get out of class. They are identified as being gay, but they're not out yet, they go to donate, and they lie on the question here and they say they have not ever had sex with a man. I would say it happens a few times a year that we get a phone call from a friend or someone that knows them and knows that they're gay. And they call us and say, “Hey, I know so-and-so donated. I saw them there and I know they're gay and they shouldn't be donating.”
Sam: But like someone on the football team or the band, if you went to my high school, maybe tried anal sex at some point, but because they're straight for now, at least they don't have their friends blood narcing on them.
Gaby: Number one, blood narcing is a ridiculous term that I cannot believe that you just invented on the spot. But number two this whole situation to me reinforces how the survey ends up being an imperfect way of assessing risk for something like HIV exposure and as it turns out, maybe unsurprisingly to a lot of people, is imperfect in more ways than one.
For example, here's something we haven't talked about yet. The now infamous question 35.
Waseem: It says, have you received money, drugs, or other payment for sex? Now, if I had paid for sex, right, and let's say I were a straight male, I paid for sex and, um, had a female prostitute. I would only be deferred for a year. But if I were a man that had sex with a man, I was deferred for a lifetime.
But when you look at the risk, the risk of having HIV and any kind of, really, disease is high in both categories. So why discriminate against the man who is having sex with a woman and paying for it versus a man who's having sex with a man and potentially monogamous.
Richard: Hector mentioned that the FDA has actually promised to look into questions that would be behaviorally specific and not rely on assumptions and biases about specific identity groups.
Hector: What the FDA wants to do is to, and which it says actually it's going to do, in the guidelines that it issued just a few months ago is to, to study implementing a questionnaire that includes individualized risk assessment. Nobody has done a study to show that when people are answering questions in an individualized risk assessment questionnaire that they're answering them in a way that's accurate and ensures the safety of the blood supply. And the FDA has said that's what it's going to try and do.
Sam: So the FDA doesn't just want data on how well a questionnaire works. They want to know specifically if we're asking people about specific behaviors instead of identities, are as many people going to slip through the cracks asking one way versus asking the other.
I asked Waeem about why the FDA is okay to offend gay and bisexual men and uses data to support that while they're also okay to say, “well, we don't want to offend folks by asking about butt sex.”
Waseem: So that's part of the prudish nature of the questionnaire. Can you imagine if you asked some older woman, do you have anal sex? It would be a horrible way. You'd scare away a lot of 80 year old women who were trying to donate. So they have, they kind of tiptoe around the question without actually asking it, which makes the questionnaire flawed in that way.
Richard: For the record, I take care of 70 year old straight women who have had anal sex in the past three months, by the way.
Sam: Hey everyone try this experiment at home. Ask your grandma about butt sex and see how weird it gets. (clears throat) Yeah, I digressed.
Gaby: So to cut to the chase, emotional palatability for straight donors is prioritized over the stigmatizing of facts of how screening is done which if you're full of rainbow feelings like me is really, really troubling .
Sam: But was Waseem said, the FDA doesn't care if feelings are hurt. It cares that it has a safe blood supply.
Waseem: It's not their job to consider the feelings of others. It's their job to protect the blood supply. So from their perspective, to hell with the feelings. They care that it's safe for someone to donate and they care it's safe for someone to receive blood. It's up to everyone else to kind of have to convince the FDA that it is safe if you ask certain questions a certain way, and if you, you know, approach it as a specific way, then yeah, you can make it safe, less biased and less discriminatory.
Gaby: Safe, less biased, less discriminatory. Hashtag goals.
Richard: There's some homophobia baked into all of this.Tthat asking someone about butts sex would deter them from donating. It's not like the questionnaire is not happening at the doctor's; it's confidential, but it's something of a public event, especially at a high school.
Sam: It’s very personal information that people may not have ever shared before and are now being confronted with.
Lukus: I don't think that we should easily disqualify what the type of stigma that a deferral like this puts in people. I don't think we should easily discount what weight and gravity that has not just for our broad culture and what it, what it means for what people think of first, when they, when they meet somebody who might be gay.
I turned 18 in 2002. I graduated high school in 2002. I came out in the year 2000. I felt alone a lot, and I knew very little about what being gay meant. The most broad sense of what gay meant to me was somebody who was at high risk for AIDS. And that's all I knew. And that stigma sat with me.
Sam: That's where we are and where we have been. But to get a sense of the future we asked Hector.
Hector: We can detect most of the, or all of the important bloodborne pathogens, including HIV, Hepatitis B, Hepatitis C within about six weeks. Some could argue that while six weeks is when we should be talking about in terms of a deferral period, but there is this thought or concern about being prepared and ready for the pathogen that we don't know about. And we don't know how it's going to be transmitted and we don't know how it's going to affect the blood supply. And I think there is some legitimate room for debate and discussion over that. And that's why in a lot of the materials that we've written and supported say that the deferral period in an individual risk assessment paradigm should be at most three months. And so then there's this question of between six weeks and three months. You know, how much lower can we get that ensures the safety of the blood supply
Richard: It all comes down to window periods and the fear of a new disease that hasn't been identified yet. Keep in mind, HIV was new in the eighties. COVID was new in December of 2019, and we're still learning about the sexual transmission of Hepatitis C.
Gaby: Okay. So in slightly less nerdy language, even if the FDA and blood ban screening questions become individual risk based and stopped labeling an entire identity as risky, the period would likely only go down to six weeks from three months.
Richard: Which means that many sexually active gay and bisexual men still won't have blood donation on the horizon.
Sam: All right. So the future is maybe less discriminatory, but no one's going to be sticking a big ass needle in my arm for blood anytime soon.
Gaby: Weird flex, but okay.
Sam: I didn't say big arm. I said big needle. (Richard, laughing ~with abandon~) To take my arms out of this, a brief and fascinating aside about preexposure prophylaxis for HIV. I asked Waseem about this because I was curious if PrEP would change the approach to gay and bisexual men donation deferrals, given that it's loweedr the HIV rates within these communities.
Richard: And surprisingly it's actually the exact opposite.
Waseem: So you're not going to like what I have to say next about Australia though. They've actually tested people who are on PrEP who have been exposed to HIV just through sexual contact and they found that they've been falsely negative.
Richard: So I want to be clear about this. PrEP is incredibly effective and should still be used for people who are at high risk for HIV. However, because PrEP works mostly in the areas where you might get infected, like the lining of your anus, it's not floating around in the blood and can lead to you having a little bit of HIV in the time that it takes for it to die off in your bloodstream. And if you give blood during that time, it could infect the blood bank
Waseem: They're actually recommending and their donor questionnaire to ask specifically, are you on PrEP? And if you answer, yes, you're not donating. You're done because they can't prove - it's gonna be hard for them to prove that you don't have HIV because the drug is doing such a good job.
Sam: They gave us Kylie Minogue. They gave us Sia, but now we have to deal with this shitty piece of news. Thanks Australia.
Gaby: Um, well don't tell me that this podcast isn't educational, because today I learned that SIA is Australian. Okay two real us back into actual educational content, the point of all of this is at the increasing availability of PrEP dramatically changes the landscape for blood donation screening. And it makes it harder for those taking PrEP to donate, not easier.
Richard: Let's pause and say here that we encourage everyone to prioritize their own health and do what they need to prevent HIV infection and have a healthy sex life. And so giving blood should not determine what you do for your own health, but decide whether PrEP is right for you before blood donation enters the conversation.
Gaby: Let's table that for later and get back to Lukus's journey trying to give plasma.
Lukus: The exact day that I was going to be going to be re swapped and tested for coronavirus. And to have samples of my blood taken. And again, I'd say this, not advocating for this behavior, but I had been considering whether or not I should pursue donating, even though I didn't qualify under the 12 month deferral because I keep excellent track of my health. I have not been sexually active. I have, I see my primary care physician regularly.I'm tested every three months like clockwork. Um, and there was a moment where I was like, you know what? This is a moral imperative. I do need to help if I can help. And as I was going into Mount Sinai, the FDA announced that they were lowering the deferral to three months.
Sam: It's spring 2020. He has COVID antibodies. He passes all screening questionnaires, truthfully. He is outside of the three month referral period, meaning he can donate per FDA guidelines and he shows up.
Lukus: They cleared me because I was able to answer all of the questions honestly, and that I had not had sexual contact with another man in the last three months. And so they told me that the New York Blood Center would be reaching out to me to schedule my donation appointment.
Gaby: Okay, so let's pause to recap how policy is playing out here.
Sam: Here's Sam with the homosexual policy update. The FDA updates it's deferral period in April 2020. New York Blood Bank updates its questionnaire very shortly after that. Lukus gets screened and then he's approved and then he goes to give blood.
Lukus: They asked if I had ever donated blood before and I told them I hadn't really been able to donate since I was 18 and I was excited about it and a little nervous about the process and the immediate response back was why haven't you donated back? And I just sort of casually offered, “I'm a gay man”. And the moment I said that the look in the eyes of the person I was speaking with changed, um, they went cold and I was immediately told, “well, you will not be donating today”. And so in that moment, I was shocked at that response. And so I asked for confirmation and it was returned back to me. “You won't be donating today”. And so I felt I had only one tool left in my belt in that moment. And so I kind of volunteered the information I knew, which I certainly understood the moment they must know as well, but I offered, you know, if this is because I'm a gay man, I know the FDA has recently relaxed its deferral from 12 months down to three months. And as I was in the process of saying that I was interrupted and the response back was, “I don't know what you think, you know, but you will not be donating here today”. I felt surprised. I felt upset. I felt confused and I felt a little deflated in that moment.
Sam: He should have been able to give blood, but the people who ideally should be the most informed of the updated policy have this ingrained notion of like, oh, he's gay. He's telling me that. And he's a danger to the blood supply because of this outdated and uninformed biological understanding of risk and HIV.
Gaby: And Lukus was ultimately told he was asked the updated three month deferral questions in error, but the staff needed to be trained and that when their computers are updated, he may be eligible to come back and donate.
Lukus: And then I was asked to go home and I had walked back through that initial waiting room and went home and just kind of sat with that experience.
[SWEEPER MUSIC]
Sam: Lukus was a willing and eligible donor but he left feeling labeled by science as something unsafe as a person who is risky as a person who's dirty and not labeling sticks, not just because of his behavior, but because of his identity.
Richard: So the reason organizations like GLMA and folks like Hector advocate is for moments like this, and really like the one he had 18 years ago, which despite policy changes, aren't really that different.
Gaby: So it sounds like the future is complicated. Waseem made it clear that the FDA doesn't make changes without the data behind it and studying this data, studying how well screening questions that ask about specific individual sexual behaviors work is going to take a really long time. And then there's this second thing, which is that blood centers don't want to scare away straight donors with invasive questions about butt sex. And that's a really big concern.
Richard: It's also evidence of how we stigmatize sex and sexuality with the idea we're more comfortable labeling identities as dirty than we are actually talking about the ways in which people might be having sex. Because what we haven't mentioned so far is that there are many gay and bisexual men who don't have anal sex and are at less risk than their heterosexual colleagues when giving blood. But we don't give them that opportunity.There's a lot of nuance, but the reality today is that the screening questions are discriminatory against gay and bisexual men.
Sam: Let's go to Lukus for the last word.
Lukus: To live with that sense of fear. That just because you are who you are, just because of some immutable characteristic that you have no control over that you are just dirty or an unworthy that has lasting effects. That's a ripple effect. I've had to wrestle with internalized homophobia throughout my life in ways that surprised me, but also ways that I guess didn't. Like that doesn't disappear just because the FDA changes a rule. It helps. It definitely moves it forward. It means that going forward, maybe we can start to end that stigma. So that future generations don't have that as their only identity, but it doesn't end just because the deferral ends.
[QHP THEME MUSIC]
Sam: QHP is a power sharing project that puts community stories and conversation with health expertise to expand autonomy for sexual and gender minorities.
Richard: Thank you to our guests Lukus Estok, Waseem Anani, and Hector Vargas at GLMA.
Gaby: So you can check out our website www.queerhealthpod.com and it's going to have show notes resources that we've talked about and a lot more.
Sam: And not to be my normal, desperate online presence, but a review goes a long way for us.
Gaby: Just give us a follow on Twitter or Instagram, where you can let us know what queer health questions you have and what experts you want us to bring on in future episodes.
Sam: And thank you to Lonnie Ginsburg for composing our theme music.
Richard: Opinions in this podcast are our own and do not represent the opinions of any of our affiliated institutions. And even though we're doctors, please don't use this podcast as medical advice, but instead consult with your own healthcare provider.