In HIV, we pay a lot of attention to parenthood -- but mostly from the perspective of ending mother-to-child transmission. Even then, the public health message is often mostly about the baby, not the health and well-being of the mother.
But almost nowhere do we have deep discussions about reproductive options for HIV-positive men, particularly cisgender straight men. In honor of Father's Day, we sat down with Shannon Weber, M.S.W., executive director of HIVE and Guy Vandenberg, M.S.W., RN, with the Positive Reproduction Options for Men (PRO Men) project of HIVE and Ward 86 in San Francisco.
I also held a Facebook Live conversation with Weber and Vandenberg, which you can watch, as well as read the longer interview below.
Kenyon Farrow: Thank you guys so much, one, for reaching out to us to have this conversation and, two, for participating today.
So, my first question is, how was HIVE started?
Shannon Weber: OK, great. So, I'm the director of HIVE. HIVE, for a long time -- in fact, since 1989 -- cared for women living with HIV around pregnancy. And probably in the mid-2000s, that expanded briefly to start caring for HIV-negative women. And in 2010, we began offering PrEP [pre-exposure prophylaxis] to women in and around pregnancy.
And so, as we began to see more sero-discordant couples, or HIV-negative women, we had these questions. You know, where are the men? Women get pregnant and they get HIV generally from the same activity. And, really, we weren't sure where the men were and what kind of services they were receiving.
In 2012, we got a small grant, and that's when I partnered with Guy and we started this project at Ward 86.
KF: So, Guy, if you could tell us a little about your work and, as Shannon said, how you two connected, and the process, the developing, of a program for men within HIVE.
Guy Vandenberg: So, I'm a nurse here at Ward 86, which is one of the -- or maybe the -- first HIV clinic. I got into HIV back in the '80s, mostly working with intravenous drug users on the East Coast and through needle exchange programs as an activist. I was a social worker at the time, and an activist. Then, I worked for hospice here in San Francisco and went to nursing school, and then I worked in a community, in a clinic. I always had a lot of interaction with men who had sex with women. And here in the city, among people living with HIV, that is a minority. It's mostly a men-who-have-sex-with-men epidemic. And so, the group has been underserved and neglected.
And so, I had conversations with guys about their reproductive desires, about what it is like to live as a man who is not gay-identified and be in this clinic.
We started with just focus groups: What do men need? What do they want? And so, support groups came. We produced videos, a series of videos, that are on the HIVE website, with individuals and couples.
And then it grew. Over time, it grew into this reproductive health clinic that we do -- which is broader than just reproductive health, actually; it's family planning for people living with HIV, issues around disclosure. So, Shannon and I have been doing a clinic where individuals or couples can come and get questions answered and process through what their options are -- which are, as we know, basically no different from people living without HIV. But that is not widely known, even among providers. There's a lot of -- you know, I was interested in hearing what you have to say about the folks you've talked to. And we've had those experiences, as well, with men.
And, I have to say, a lot of our work has also been with providers, to get them on the same page and updated about what's going on, and that people living with HIV have all the same family options that people without HIV have.
KF: For a person who might be interested and say, "Hey, I'm thinking about, or my partner and I are thinking about, having children, or we have these questions," what are the different programs within the clinic that are available?
GV: So, some of the things we discovered in our clinic -- which, as I said, only serves people with HIV and their partners, or people at high risk of HIV on PrEP -- it was remarkable for me to find how few times there was documentation of a discussion about reproductive desires or family planning anywhere. And even people being treated for sexually transmitted diseases sometimes weren't asked who their sexual partners were. So, we have work to do; that was clear. We've integrated a lot of that.
We're still working on normalizing the discussion around family planning and reproductive health desires. And often patients are referred to Shannon and me at our monthly clinic, which is fine. It gets people talking. And then we talk to the provider, and then it becomes more normal for providers to ask their other patients about what they may want.
So, what are the options? As I said before, people living with HIV have the same options, basically, as people living without HIV. In the era of treatment-as-prevention and PrEP, there really is very little need for the high-level technology we used to use in the past, like sperm washing. So, we work with couples that are both HIV positive; we work with gay men who want to -- either through surrogacy or adoption -- have kids. You name it, we just explore it; we explore the options with folks.
As I said, there's very little barrier having to do with HIV to fulfilling these goals that people may have. That doesn't need to be a barrier. We have the technology to make that barrier disappear.
Related: HIV-Positive Dads Discuss Fatherhood: A Spotlight Series
KF: Shannon, I think you -- you said specifically that you have some research that you've done with patients and with providers, as well. Correct?
SW: Correct. So, when we started in 2012, you know, really, it was coming from a place of humility -- and increasing humility, I would say (at least, for my own self) -- realizing how much we didn't know. And so, we began with focus groups, with men that we recruited through Ward 86. We very thoughtfully created the recruitment posters, and they said: "Are you a man living with HIV who has sex with women? Have you thought about having a baby? Come to this focus group."
We did five focus groups. And that was a transformational experience that helped shape the fundamental messaging that we ended up developing for the brochures and the videos.
And of course, out of the focus group came a lot of stories about stigma from potential partners, from family and friends -- as you had touched on, Kenyon, from the HIV, kind of, prime experience -- and then tons of providers at all levels. That really helped inform the work that we did with providers.
At the same time, we also had done a survey of all the HIV providers in San Francisco. We asked them what their knowledge, attitudes, and beliefs were around reproductive health for men affected by HIV, and then what they felt their skills were.
And so, while in San Francisco, many providers at least have the belief that men living with HIV should have reproductive options, they didn't necessarily feel like they have the knowledge or the desire; they felt like they'd need to refer to a specialist. With that, we developed a sexual health algorithm that we put up on our website and then started making quite a lot of videos, trying to answer these frequently asked questions.
Locally, we've done two provider trainings. We also participated as a clinic in a six-city nationwide provider interview series that has ended up developing a number of publications. And those interviews were about all reproductive health desires for all people affected by HIV. So, it did include men, but a huge component was inclusive of women. And so, we did learn that, while there are varying degrees across the U.S. of provider knowledge, one thing that's consistent is they could use more training and more tools to help support them on that journey.
KF: Guy, how much do you see in some of your patients; how much has what we would call treatment-as-prevention -- you know, the advent of U=U and the campaign -- how much has that permeated populations of men that you work with?
GV: I think it's starting to change. And, as with everything that we've seen, or almost everything that we've seen before, that discussion gets taken up in certain communities earlier than in others. The initial ads and information were very much targeted towards the gay community. And only now do I see more of an effort, and more of a discussion, happening in communities of color in our city.
We know in our city that there are tremendous health disparities. And we know that information is not provided in the same way -- and needs to be provided sometimes in a different way, in a more community-based way, rather than coming from academia or the medical community. And there is justified distrust sometimes. So, that requires a careful approach.
I've collected a number of discussions I had with people who had just been recently diagnosed. A young man in his 20s still thought that his HIV diagnosis meant that he was going to die, that he was never going to have a relationship again, and that he was going to be shunned by his community. And when we talked about stuff later -- because, at that point, he couldn't take in that much information, but later when we talked -- he said: "I've absorbed the information. I've read about it. I know that I'm not going to die. I know that I can have a healthy live. I can live a long time. I just wish -- I had always wanted to be a father. And I guess that's out of the question now. I'm still sad about that."
That is still some of the stuff that lingers. I try to explore where that came from. Had somebody told him that? But that is a very common; it's a very common assumption.
SW: If you don't mind, I want to add a little something about the U=U piece, because I think it's important for your audience -- which is, I think U=U is out for the people who have the privilege of being connected online to HIV information sources and safe spaces. I mean, Ward 86 certainly rolled out treatment for all earlier than anyone else. But treatment for all is very different than U=U. You know, treatment-as-prevention is about health; U=U restores people's dignity.
I guess what I'm wanting to question is if we've gotten to a place where we restore people's dignity. I think there are many people and organizations who have signed on to U=U, and put a meme up on their Facebook page, but have not changed their clinic practice. And they haven't rearranged the furniture in their head and the words that come out of their mouth so that they do speak to people from a place of dignity.
I think, further, there's a stuck-ness for folks around reproductive health. So, even some folks who've freed themselves around -- "OK; I would give you permission to have sex with someone without a condom if the purpose of that sex was to have a baby" -- there's still a lot of hang-up around that.
KF: I think within transgender communities there's also a question about the extent to which folks who are trans -- and certainly trans and HIV positive -- either are parents or want to parent, want to have children. You know, in a lot of cases, even in some of the more trans-accepting spaces and society, there is an assumption that people want to have full genital surgery -- which is, for most trans folks that I know, not often. People can't afford that or don't necessarily want to do that for a number of reasons, one of which may be that they actually want to have children.
So, I'm curious about your work with either trans men or trans women, and just HIV positive, in the context of the clinic and the program, as well.
GV: You know, in San Francisco, gender reassignment surgery is covered for our patients now. A trans woman client who was contemplating this reached out to say, "Before my surgery, I want to store semen in case later I want to have children."
It turned out to be -- I mean, of course, that's possible, right? But we ran into a number of unexpected barriers that we will overcome. For example, with somebody living with HIV, what does the sperm bank do? In many places there has to be a separate freezer for that. And to my shock and surprise, there has to be custody of the sample in case the person whose semen it is dies. And it needs to be somebody from the opposite gender. Who knew, and why?
So, on these journeys, you find unexpected things, and lots more work to do. But we do encounter -- we do work with -- trans folk and their reproductive desires. Generally, I would say, we learn a lot, a lot of new stuff. And we are lucky that we live in a place where we can talk to policymakers that listen. But a lot of work remains to be done.
SW: Yeah. I can add that we just had a beautiful experience, learning on both sides, you know -- or all sides, I should say -- where we had a pregnant trans man on PrEP who delivered, at HIVE. And this is really a beautiful story, because the patient came already pregnant to us from a community clinic that we have worked with for a long time. So, for me in many ways, this was a coming full circle of this work, and this journey, that Guy and I have been on for years, and partnering with community organizations and getting the information out there. And here, a provider being so empowered and providing trans-inclusive reproductive health care -- how amazing is that? So, that's beautiful.
You know, the HIV adds sometimes a layer of complication. But the queer community has been rising up for decades and has a lot of do-it-yourself approaches and a lot of connections and resources online for how you can go about family building. And there's lots of ways to think about family building, which is that you're having a biological child, or you're fostering, or adopting. You're creating a three-parent family. You're creating a chosen family. You're reimagining what it looks like to be an aunt or an uncle. All of that with a huge amount of, sometimes, regret for some folks, depending on what their age is. Because, your biology changes as you age, and you're less likely to have a child.
So, I would say that these are very nuanced and beautiful conversations that are not that different than what's been happening in the queer community for a long time. Guy and I have had the beautiful experience of being able to build on that work that's been happening for family-building pioneers now for a long time. So, I would encourage folks to look beyond just the HIV world.
KF: Guy, we're coming up on Father's Day. What's your advice or message for folks in the community who are considering becoming fathers, becoming parents at this point?
GV: I think things that I find important to remember are, first of all, the basics. People living with HIV have fathers. People living with HIV are fathers, or may want to be fathers. Fathers may acquire HIV. These things sometimes get forgotten, and it's important to remember.
And then the challenges: I would say we have a lot of old damage and pain to overcome, a lot of stigma -- a lot of stigma with HIV, but also a lot of stigma with fatherhood. You know, fathers have been taken out of their community and incarcerated and then get blamed for not being, you know, good fathers. And the way we look at fathers deserves a lot of healing, on individual and family levels, but also on a societal level. You cannot criminalize entire communities and groups of men and then blame them for not being present. So, that has to happen -- many levels of that.
And we need to start celebrating fatherhood as parenthood. According to anthropologists, there are two kinds of societies: where fathers are involved and where fathers are not. That's the simplest way of saying it.
I think every parent should have the opportunity to make choices. Reproductive rights are basic human rights. And so, people need to be given the right not to be denied parenthood, not to be forced into parenthood, to make informed choices, and to be supported and sustained. We're one of the few countries that doesn't guarantee maternity leave, much less paternity leave. What's up with that? You know? Why is that?
And lastly, I think there is reason to be very hopeful. There is reason to be very hopeful. We have the tools to make HIV not be a barrier to what people want to do in regards to their family planning. And as Shannon said, that can look like a traditional heterosexual male-female family, but it can look like many other things. And we have a way forward. We have many barriers to overcome. But, again, HIV does not need to stand in the way. And we need to celebrate that.
KF: Shannon, what's your advice on this upcoming Father's Day for the provider community about folks who are HIV positive, in sero-discordant relationships, and certainly for queer and trans folks, who are thinking about becoming fathers at this point?
SW: I would like to give one practical tip to providers, which is to just try and experiment and see what it's like to ask all your patients -- "Are you thinking about having a child in the next year?" -- and just see what happens.
You may get lots of "No"s, or strange looks, or something. And then, at some moment, you're going to ask someone that question, and they're going to crack open, because that is the question they've been waiting for so long for someone to ask them. And you don't have to know all the answers to ask the question, because there are online resources. You know, Guy and I would be happy to help. It's just being willing to go on the journey with the person, and being able to open the door to possibility.
I've seen so many providers do this and not regret it. So many providers who have gone on that journey ultimately have a story in which they feel reconnected with the reason that they went into medical care to begin with, about really doing this deep, life-changing work.
This interview has been edited for length and clarity.