Many LGBTQ and HIV activists have long fought the Food and Drug Administration (FDA)’s ban on men who have sex with men (MSM) donating blood. The policy was reformed in 2015 to allow men who had been sexually abstinent for 12 consecutive months to be able to donate blood. But some activists think this isn’t enough.
At the New York State Annual Ending the Epidemic Summit in Albany, New York, on Dec. 3, Terri Wilder spoke with Anthony Santella, Dr.P.H., M.P.H., a professor of public health with Hofstra University, about his poster presentation: “Let’s End the Stigma: A Debate on the MSM Blood Donation Deferral Policy.”
Terri Wilder: Let’s start out by talking about the background. I’m hoping that a number of our readers are familiar about the blood donation deferral policy. But for some of our readers who aren’t aware of it, can you take us through what this is, what the implications are?
Anthony Santella: Sure. In the early days of the HIV epidemic, when we really didn’t know a lot about transmission of the virus, a lot of people—including scientists, blood-banking professionals, the FDA—were very skeptical about who should be donating blood. So, in 1983, the FDA developed a policy that asked MSM not to donate blood.
It was updated in 1992 that said, you know what? Regardless of who you’ve had sex with, whenever you had sex, there’s a lifetime ban on MSM donating blood. And you just can imagine that’s very stigmatizing for a group of people, gay and bisexual men and other men who have sex with men, who want to do a good service for their community and donate blood.
TW: And so, the rationale behind having this in 1983—which, we were about two years into what we know as the HIV epidemic—was because they were trying to use this as another mechanism to screen out blood that had HIV.
AS: And it was also used at that time to help people figure out that people actually had HIV. Some people found out they were living with HIV after they’d donated blood. Because this was, you know, before we had good tests and technologies and diagnostics. And so, yes; we were at a time where there was a lot of questions and uncertainty. And it made a lot of people nervous.
TW: And hysteria.
AS: Hysteria. And you know, people contracted not only HIV, but other blood-borne infections, through getting tainted blood products. So, I understand. We were in a different time scientifically.
But the stigma that this decision has had and its long-term effect on MSM is really something that motivated me as a gay man to do my part to try to change this.
TW: Can we just kind of unpack the stigma around this? In the eyes of these public health officials, they looked at it as, we have this crisis right now happening. We’ve figured out that it is a blood-borne pathogen. And so, it seems to be impacting men who have sex with men. So, this is one way to keep the blood safe in the United States.
But this really also is something to look at, not only from AIDS phobia/homophobia; like you said earlier, it was at a different time in 1983, but the fact that we still have these policies now really kind of lends it to that this is really now about homophobia.
AS: Yeah. This old law—many of the FDA and other kind of blood-banking public health specialists who work in this area have agreed for a very long time that the policy was outdated. But we went from 1992 to about 2014, which is over a 20-year period, where there was this lifetime ban.
And 2014 was the first time advocates were successful in really demanding change. And so, the FDA agreed to revisit the issue. They had their committee meetings and open-comment period. And in 2015, the U.S. joined the same policy that Canada and Australia have, which is a one-year deferral period.
If I, as MSM, go to donate blood and say, “OK, yes, I’m a gay man, but it’s been over a year since I have had sex,” I can donate blood.
Still, one would say, well, that still seems pretty stigmatizing. Because now I have to go and talk about my sex life to these people who had no idea who I am and see that look on their face, the stigma, discrimination. That’s not good enough.
And so, what we’re trying to do now is build momentum towards even better change. And, in fact, just last week, the national office of the American Red Cross put out a statement really addressing the FDA, saying, you know what? The twelve months was a good start, but even us, as the Red Cross, acknowledge that we have to go closer to what other countries, particularly those in Europe, are doing—which is even lower it to three months or make it completely based on sexual activity, regardless of your identity.
TW: I want to ask a question about the one-year deferral. Is this regardless of if you go to a blood drive and you say, “I’m a gay man; I had sex three months ago, but we used a condom”? They still won’t take your blood?
AS: Yeah. It’s regardless.
TW: Or, “I am using PrEP [pre-exposure prophylaxis].”
AS: It’s regardless of anything. The newer model—the CDC [Centers for Disease Control and Prevention] and FDA are recruiting people to test a new model—looks at sexual behavior. How many different sex partners have you had? What kind of sex have you had? Do you know if you’ve had sex with someone living with HIV? Condom use and PrEP. It’s looking at more holistically your sexual health and behavior, regardless of who you are, and to see: Is that a better alternative than the current, really dated questions that really don’t make sense in 2019?
TW: Right. Let’s talk about what the hope is for change. You said that some activists got together in 2014 and really started pushing, like, “This has been going on for two decades. It’s time to stop. We clearly have a better understanding of the virus. We have better testing, etc.”
What are folks hoping that will be next steps?
AS: We don’t anticipate it going from a one-year deferral completely to the sexual health activity and history overnight. What most likely will happen is we’ll go from the 12-month deferral to what many countries in Europe are doing, like, say, in Italy, which is three months—which is, you know, “In the last three months, have you had sex with another man?”
That’s still not the best, but it’s getting closer to where we want to be, which is most likely where the CDC and FDA are working now, which is testing this HIV risk questionnaire. And so, hopefully, in the next few years we’ll go from focusing on your behavior (like being MSM) to, it doesn’t matter who you are—gay, straight, trans, gender nonconforming, MSM or not—that your risk should determine whether you’re a good candidate or not.
Because we know that there’s data that shows when you look at HIV and hepatitis in the general population, people who donate blood and repeat donations, that we see much higher rates of blood-borne infections in the general population than potentially in this community. So, let’s just tear apart the stigma and let’s say, you know what? Regardless of who you are, your identity, we treat everyone the same. At least be consistent about it.
TW: Let’s talk a little bit more about this evidence for change, in terms of whenever people in power kind of hold the cards in making a policy change. It’s important for activists to, kind of, like: What could we anticipate that they say? And what will be our rebuttal? Or what can we tell them as our messaging?
Let’s talk about some of the evidence for change that you have here on your poster.
AS: Sure. There are very few studies on this topic. You know, the dearth of literature and published information really is holding us back, which is how we hope to contribute toward that literature.
One study did show that there really was no difference, when you compare MSM to non-MSM, in their understanding and, I think more importantly, their adherence to the pre-donation questionnaire. So, it really didn’t matter who you were. There really wasn’t any statistically significant differences.
TW: You mean that they didn’t even realize that they were being screened in or out?
AS: Exactly, yes. You know, being MSM does have a much higher—62-fold—increased risk, in terms of being the most important risk factor for HIV infection blood donors, more so than having multiple sex partners. I understand that. We understand that. That’s not new science to us. We know that MSM who are sexually active are the leading population when it comes to incident cases of HIV.
TW: In the United States.
AS: In the United States. That’s not telling us anything new. So, we see that still with people who are donating blood. OK? Now, we see very little—we don’t really know the true percentage of MSM who are donating blood because some people, for good, bad, and indifferent reasons, don’t tell the whole truth, the full truth, when they’re answering these questions. Because they want to just do a good thing, as opposed to all these questions that you’re being bogged down.
And so, what the study shows us is that 2.6% of male blood donors report MSM. But that’s of those who actually took the time and effort to actually go and try and donate blood. So, it is a small percentage, which—some people may say, “Well, why bother doing this if they’re such a small percentage of the blood donors?” But, listen. I’m a gay man. I wouldn’t even think about stepping foot in a Red Cross, because I know they don’t want my blood. So, the fact that it’s just a small number of donors doesn’t mean this isn’t the people who would go donate if this policy didn’t exist. So, I don’t want that kind of number to be used against us, when it doesn’t really represent who we are.
TW: And the other thing that I think is interesting about looking at this is we have a blood shortage. So, we don’t have enough donors who come and go to blood drives or go on their own to different things. And my sense has always been, in particular, that the LGBTQ community has been very generous in volunteerism and being there to help out with different communities. And so, this is a time where we really would love for everyone to come and donate blood.
AS: That’s a great segue to what I wanted to talk about, which is two future directions. One is using what we call apheresis platelet donations, which is a very similar model to the blood donation. But the apheresis process pulls out the platelets. And so, you could do this regardless of who you are. And so maybe as an alternative model right now, until we figure this out, to have more of these events so that, just like you mentioned, the good service that gay and bisexual men want to do, that we’re not excluded and our platelets can be used, regardless of our sexual activity.
And the second thing is the HIV risk questionnaire, which is a project by the CDC and the FDA, which is looking at number of sex partners, type of sex, having sex with people who are living with HIV, condom use, and PrEP, as a new model to determine risk outside of the old, traditional questions, which are: Are you a male? And have you had sex with another male?
So, the bottom line is, blood is blood. Regardless of if you’re gay, straight, bi, trans, cisgender, gender nonconforming, there should be policy in place that’s free from stigma and discrimination so that anyone who wants to donate blood can.
TW: Great. This has been a really informative conversation. If people were interesting in getting more involved and advocating for this change in policy, are there particular groups that people can join? Or should they just kind of start talking about it on social media, just so that awareness can just keep being raised?
AS: Social media is a great way to get this message out. We recently had World Blood Donor Day and other kinds of social media platforms to just raise awareness of this issue. Because many people, including mostly people who aren’t MSM, really have no idea. They just think, “Oh! If you want to donate blood, why don’t you?”
Well, when I get that announcement from my office to go donate blood I write back saying, “Sorry, that doesn’t apply to me.” So, if everyone just kind of picks it up a little bit and just promotes the message that MSM are being stigmatized and discriminated against donating blood, the more I think this will build, and the momentum will be on our side.