Today, you will hear the views and ideas of our pozcast guests. We are eager to showcase their expertise and provide a platform for their views, but they may not always reflect or align with the views of The Positive Effect or the MAP Center for Urban Health Solutions.
Welcome to the pozcast. We are created by and for people living with HIV. On each episode, we explore what it means to be poz. We challenge the status quo and we share stories that matter to us. I'm James Watson and I'm HIV-positive. If you're living with HIV, listen up.
On this episode, we're going to take a look back and shine the spotlight on one of my favourite episodes from season one: HIV, Fatherhood and Fertility. It was the second episode we ever released and originally aired in June 2017 on Father's Day. It deserves another listen.
You know there was a time when becoming a father, for many men living with HIV, was out of the question. Times have change and condomless sex and parenthood are now realities for people living with HIV, thanks to the advances in treatment and the evidence-based, stigma-busting messaging around U=U, or undetectable equals untransmittable. Family planning and parenting research has mostly focused on women, but researchers have now turned their attention to men. And this is why I wanted to revisit this episode, because these messages and conversations are just as relevant and important as they were four years ago. In 2017, I chatted with Logan Kennedy, a registered nurse and senior research associate at the Women and HIV Research Program at Women's College Hospital, and Dr. Mark Yudin, a professor at the University of Toronto, and staff physician in the department of Obstetrics and Gynecology at St. Michael's Hospital. Both our investigators on a research study titled, Understanding the Fertility Desires and Intentions among HIV-Positive Men Living in Ontario. I also had the privilege of speaking with Charlie, an HIV-positive Peer Researcher who interviewed the men participating in that study, and it was it was a conversation that really moved me and stuck with me. It's definitely worth a take-two, I hope you enjoy.
So Mark, why are you researching men's fertility?
A lot of the work that you look at globally and also locally is focused on women when it comes to this area. And there's an awful lot of men out there that also want to have kids. And we really feel in our study team and our clinical team that we want to be advocates for those men and we want to help them. And so it's not just about getting women pregnant anymore, it's about looking at how to achieve having a family, whether you're a man or a woman, so we need to focus on men. And you know, we've also heard that message a lot from the community.
Yeah, no, for sure. I think that's what I was going to add was just that, overall, we've had these opportunities over the last 5-10 years to talk to women in forums, and there's been this focus on women. And the women in these forums and men and partners and agencies have stood up and said, what about the men? What about the men? And an opportunity finally presented itself to focus on men and we realized it was for sure the right time. Yeah, yeah. And it's really just in the last 18 months to two years, that I do regularly have referrals from around the GTA to come and talk to us, primarily heterosexual men or men who are having a child with a female partner, but where it's a sero-discordant couple, and they want to have a discussion about pregnancy planning and their desires. And, you know, what are the recommendations and safety and transmission and these sorts of things. So that is exciting to me that we're starting to see that uptake, and in a broader, you know, in a broader sense. And again, I think it brings it back to the importance of the timing because it's really the science has changed so much in five years that we can counsel different things and different options that maybe make pregnancy planning and parenting feel more attainable.
On that note, so how has the science changed?
In a really kind of in a nutshell, to sum it up, I think the two pieces of science that are the most influential in terms of the guidelines right now are what we're talking about a lot which is U=U, right? So undetectable equals untransmittable—you're not going to transmit—is a proper way of saying it. And so we can look at how we recommend options for conception, really what the guidelines are about is some background information, some general info and then a couple scenarios. So if you are counselling a couple that's sero-discordant where the female partner's negative male partner's positive, what options do we recommend in terms of how they might conceive. And so with that, U=U kind of campaign and the science we have HPTN [HPTN 052 study] and other studies, we can start to talk about the option of condomless sex with timed ovulation or without timed ovulation as a preferred, and, you know, safe option. Five years ago, the recommendation was clearly—that our top recommendation was to go to a fertility clinic which costs money and to use assisted reproductive technologies to further minimize that transmission. So I think that's the first piece of science that's really exciting. And the feedback we've been getting generally is that people are really excited to see that we're making this statement—that we can be counselling people and saying, have some sex and make a baby, if that works in your, you know, scenario or your relationship.
And that's a huge clinical change because, you know, as Logan said, only a very few short years ago, we could not say that. And we had to counsel those couples to go down this very long path of, you know, access to fertility clinics for advanced technologies in order to get pregnant. And to be able to say now to people, we can actually officially recommend that you have sex without a condom to get pregnant, just like every other couple who wants to get pregnant, is in my mind, a huge advance, you know, both medically but also socially. And I think, you know, like you said, there's a lot of excitement, I think around that and I think that couples, you know, really respond to that. It normalizes the whole process for everyone, which is what we want.
Yeah, and then the other piece of science that I think will have a big impact on the new guidelines, is this discussion that's happening globally around the use of PrEP in the context of conception, as well. Again, we talk aboutPrEP more broadly, but there are certain pieces of literature and guidelines that talk about when is there an added value of PrEP? Or when do we need to counsel about it, and it should be an informed choice on the couple's part, whether PrEP is something they want to use or not, whether it's formally recommended.
So what would you say to a man who is HIV positive looking to start a family, Logan?
I would say, you know, I think the first thing I would say is, who are you going to go to for help? Who is going to be the right team to support you? Mark and I can sit here and talk to you for hours about this topic, because it's what we do.
How would they know that?
So I think the best way to know that is to start with somebody they really trust. So maybe it's their HIV doc, maybe it's a friend, a peer within the community, maybe it's an agency, maybe they Google Mark and my name on the internet and say, This is where I live in Ontario, who should I go to talk to? Because there's great support out there with the right team. And, you know, Mark's practice has expanded over the years to include supporting couples where the female partner is not living with HIV, it's the male partner, but we know that Mark knows about HIV, and the labour and delivery staff know about HIV, so it's doing some investigating within the team that exists for them, but also being bold enough to send us an email and say, I want to have a baby, who should I go and talk to you about this?
And my first response, you know, to everyone who comes to see me with HIV, or with some connection to an HIV-positive person, and they're looking to have start a family have a baby, regardless of scenario, my first my first sort of message always is, "This is amazing." And we have seen over the past five to 10 years, increasing numbers of pregnancies in HIV positive women, and also in couples where one or both are HIV positive, and we've seen that across Canada. And I always say that's good news. Many, many, many of these individuals and couples are planning these pregnancies, they're not accidents. And so, you know, that's wonderful news for us in this business, we want people to be able to have children if that's what they want. And in my own practice, in the past 10 to 15 years, I've had what I call a lot of repeat customers, so many women and couples affected by HIV that have come back two or three times with pregnancies. So that's always my first thing: this is this is fantastic. And we want that message to be out there that if you want to have a baby, you can have a baby.
You're listening to pozcast. Now that we've heard from the experts, let's hear from Charlie, who's been conducting interviews and collecting data as a peer researcher for the study, Understanding the Fertility, Desires and Intentions among HIV-Positive Men Living in Ontario. He has a vivid firsthand take on what this issue can mean for HIV-positive men. So how has working on the men's fertility study as a peer researcher affected you?
I had the opportunity to interview dozens of brave men and hear their stories about their existing families, their desire for families, their stepkids, adoption, surrogacy—so many different stories and it was really inspiring and it reminded me, reignited my desire to become a father, to start a family because I believe that becoming a father, a good father, is one of the greatest endeavours in life. And I think that I forgot about that somewhere along the way on my diagnosis.
So how has your outlook on becoming a father changed since when you were first diagnosed until now?
My diagnosis took everything from me. It took my identity, it took my self-esteem and my future, and certainly any thoughts about becoming a father. It was a difficult and dark time for me. What's changed since then, in a word would be hope. Like I said, HIV ripped everything away from me, at least perceivably, and it's been a long road. And now I have circles of support and I've educated myself about the medication, the illness, and it's given me a lot of hope. And learning about studies like U=U...
The undetectable equals untransmittable.
Yeah, so to know that you're undetectable, you're untransmittable, you can have—you can start a family, you can have healthy children, that's it's immensely empowering. Like, I can't express how empowering that is. It gives you, gives me, an understand...Opportunities that I thought were long lost and a chance at a life that I've always wanted.
Right. And you have a girlfriend, right?
Yes.
So what kinds of conversations have you had about having kids and fertility with your girlfriend?
Well, we've talked, we've talked about how many kids and when we want to have kids. I've even set up—we had an appointment with my specialist to discuss our possibilities.
Right, and how did that go?
It was an interesting one, because I asked my specialist if he'd be willing to sit down, the three of us, and go over the possibilities. And he said, Yeah, he agreed to it. And so the day of my girlfriend is sitting in the waiting room, and I went in to talk to him because doctors can be like, black and white and aloof. Just not very warm. Not all doctors, but you know, some, and him, he was—is. And so I just asked, I went in there asked him I'm like, Okay, can you be a little bit more upbeat and warm? Because she's nervous and she doesn't know anything, and it is a pretty—it's a big moment. So he agreed, and to his credit, he was he was great. He talked about different possibilities, namely, sperm washing. He also mentioned the—it wasn't the—U=U wasn't out at that point, but he kind of referenced it, and that a lot of people who are on medication and undetectable are trying to have babies without any further medical intervention and with success. So he didn't he didn't totally stand behind it, but we all left that meeting filled with hope. And she never, she never said it at the time, but I suspect that that appointment, the weight of that appointment, was was immense in that I feel it was a make or break moment for our relationship. And my specialist probably saved my relationship single handedly.
That's saying something.
Yeah, I should probably tell him that.
Wow. He really stepped up.
Yeah.
So as a patient, what's the one piece of advice you would give to doctors when they're discussing men's fertility?
Can I give two?
Sure. Bring it on.
One would be talk about it. I understand doctors are always pressed for time, but when I was conducting those interviews for the fertility studies, there's so many men who still have a desire to start a family and it was clear to me that they're oblivious, not all of them, but most of them are oblivious to their options. So I think, you know, as their specialist or their doctor, they could start with them. And two would be, don't underestimate the impact you have on your patient's life. Because when a man or a woman with a medical degree and a white coat and a clipboard, or whatever they're wearing, looks you dead in the eye and smiles and says, you have plenty of options, and you can start a family and have healthy children, that is so powerful. They have the opportunity and the ability to change their patient's life. And I know because my doctor helped change mine.
That's it for us this month. Thanks for tuning in. We hope you'll join us next time on pozcast. And if you have any comments or questions or ideas for new episodes, send me an email at pozcasts4u@gmail.com. That's the number four and the letter U. Pozcast is produced by The Positive Effect, which is brought to you by REACH Nexus at the MAP Center for Urban Health Solutions. The Positive Effect is a facts-based lived experience movement powered by people living with HIV and can be visited online at positiveeffect.org. Technical production is provided by David Grein of the Acme podcasting company in Toronto.
