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S1E2_HIV-and-fatherhood_06-09-2017: Otter Voice Meeting Notes

S1E2_HIV-and-fatherhood_06-09-2017

Positive Effect18min

James Watson

00:04

Welcome to pozcast, the show that puts the positive in podcasting. Our program is created by and for people living with HIV. And we're here to explore HIV research in ways that matter. We're pozcast and we're bringing HIV research to life. Today you'll hear the views and ideas of our pozcast guests, and while we respect their expertise, they do not speak on behalf of the Ontario HIV Treatment Network or Universities Without Walls. I'm your host, James Watson, a person living with HIV and a community-based research coordinator. I'll be your guide for today's journey into HIV research. Let's talk about fatherhood and fertility, about HIV positive guys becoming dads. That ship has pretty much sailed for me, but it's remarkable that we've arrived at a place where science has caught up with desire. We can now choose whether to have families or not. And with this kind of choice comes a type of freedom we've not seen before. Newer HIV treatments have changed how we look at parenting. HIV positive men now have more fertility options than ever before. And with the introduction and current revision of the Canadian HIV Pregnancy Guidelines, more and more HIV positive people are getting encouraging responses from health care providers, as well as access to specialized clinicians and stigma-free parenting environments. Until recently, for many men living with HIV, becoming a father was out of the question. It either wasn't safe, the stigma was intolerable, or the cost of techniques like sperm washing were too high. But times they are a-changin'. Advances in treatment, extensive research on transmission, and movements like U=U are radically transforming HIV and the fertility landscape. With appropriate care, condomless sex and parenthood are realities for people living with HIV. And that's amazing. Until recently, the research around family planning and parenting has mostly focused on women. But researchers are starting to turn their attention to men. For this month's episode pozcast went on the road to interview two researchers, Dr. Mark Yudin and Logan Kennedy, who are investigators on the research study, Understanding the Fertility Desires and Intentions among HIV-Positive Men Living in Ontario. We also talked to Charlie, an HIV-positive Peer Research Associate who collected data by interviewing other HIV-positive men for that same study. He walks us through his personal story about HIV and fertility, and talks to us about how that work affected him. But let's hear first from our fertility experts. Mark Yudin is a Director of Clinical Research for the Department of Obstetrics and Gynecology at the University of Toronto and he co-founded the positive pregnancy program at St. Michael's Hospital in Toronto. Logan is Research Manager at the Women and HIV Research Program at Women's College Hospital in Toronto, and a Clinical Nurse Specialist.

James Watson

03:15

So Mark, why are you researching men's fertility?

Mark Yudin

03:18

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.

Logan Kennedy

03:49

Yeah, no, for sure. And I think that's what I was gonna add was just that, you know, overall, we've had these opportunities over the last 5-10 years to talk to women in forums. And there, there's been this focus on women, and the women in these forums and men and partners and, you know, 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. 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 were 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.

James Watson

05:05

So, on that note, how has the science changed?

Logan Kennedy

05:10

Yeah, so I would say it 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 - and so we can look at how we recommend options for conception, really what the guidelines are about and some background information, some general info and then couples scenarios. So if you are counseling a couple that's sero-discordant where the female partners negative male partners 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 time population 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 counseling people and saying, have some sex and make a baby, if that works in your, you know, scenario or your relationship.

Mark Yudin

06:43

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, you know, down this very long path of 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, both medically but also socially. And I think it's, 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.

James Watson

07:29

It's amazing.

Logan Kennedy

07:30

Yeah. And then the other piece of science that I think will have a big impact on the new guidelines, is just discussion that's happening globally around the use of PrEP in the context of conception as well. Again, we talk about PrEP more broadly, but there are certain pieces of literature and guidelines that talk about, you know, 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.

James Watson

07:59

So what would you say to a man who is HIV-positive looking to start a family, Logan?

Logan Kennedy

08:04

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? And you know, Mark and I can sit here and talk to you for hours about this topic, because it's what we do

James Watson

08:16

And they know that?

Logan Kennedy

08:17

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 about this?

Mark Yudin

09:01

And my first response, and, you know, to everyone who comes to see me with HIV or with some, you know, connection to an HIV-positive person, and they're looking to have- start a family, have a baby, regardless of scenario, my first sort of message always is, "This is amazing". And, you know, 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. You know, 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 and three times with pregnancies. So that's always my first thing, 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.

James Watson

10:07

You're listening to pozcast, a joint production of the Ontario HIV Treatment Network and Universities Without Walls. 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 first-hand take on what this issue could mean for HIV-positive men.

James Watson

10:33

So I was working on the men's fertility study as a peer researcher affected you?

Charlie

10:38

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 endeavors in life. And I think that I forgot about that somewhere along the way on my diagnosis.

James Watson

11:30

So how is your outlook on becoming a father changed since when you were first diagnosed, until now?

Charlie

11:41

My diagnosis took everything from me. It took my identity, it took my self esteem, 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 and the illness. And it's given me a lot of hope, and learning about studies like U=U.

James Watson

12:40

The undetectable equals on transmittable.

Charlie

12:42

Yeah. So to know that you're undetectable, you're untransmittable, 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 me opportunities that I thought were long lost, and a chance at a life that I've always wanted.

James Watson

13:14

And you have a girlfriend, right?

Charlie

13:16

Yes.

James Watson

13:16

So what kinds of conversations have you had about having kids and fertility with your girlfriend?

Charlie

13:29

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 my specialist to discuss our possibilities, right?

James Watson

13:42

And how'd that go?

Charlie

13:45

It was an interesting one because I asked my specialist if he'd be willing to sit down to three of us and go over the possibilities. And 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, can you be a little bit more upbeat and warm because she's nervous and she doesn't know anything, and is a pretty big moment. Yeah. So he agreed, and to his credit, he was great. He talked about different possibilities, namely, sperm washing. He also mentioned the- it wasn't the U=U, it wasn't out at that point. And but he kind of referenced it in that a lot of people who are on medication and undetectable are trying to have babies with without any further medical intervention and with success. So you didn't he didn't totally stand behind it, but we all left that meeting filled with hope. And, and she never, she never said it at the time, ut 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. Yeah, I should probably tell him that.

James Watson

15:39

Wow, he really stepped up. So as a patient, what's the one piece of advice you would give to doctors when they're discussing men's fertility?

Charlie

15:55

Can I give two?

James Watson

15:56

Sure. Bring it on.

Charlie

16:00

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 patients 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 like, 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.

James Watson

17:17

I want to thank my guest, Dr. Mark Yudin and Logan Kennedy for giving us some insights into the advances in HIV pregnancy planning, and the shifting focus to the fertility desires of men. You know, it's exciting to hear firsthand from medical professionals on the front lines, embracing and implementing scientific advances to make a real difference in the lives of people living with HIV. I also want to send out a big thank you to Charlie for opening up and sharing his story with us. His description of how HIV impacted his dreams of becoming a father and the steps he took to move forward gave us a glimpse into the darkness of diagnosis. But ultimately, his story is one of hope and inspiration. So thank you to all my guests and to all you poz guys out there, to quote Mark Yudin, if you want to have a baby, you can have a baby. How cool is that?

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