James Watson: 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?
Mark Yudin: 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: 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.
James Watson: On that note, so
how has the science changed?
Logan Kennedy: 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.
Mark Yudin: 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.
Logan Kennedy: 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.
James Watson: So what would you
say to a man who is HIV positive
looking to start a family,
Logan?
Logan Kennedy: 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.
James Watson: How would they
know that?
Logan Kennedy: 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?
Mark Yudin: 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.
James Watson: 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?
Charlie: 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.
James Watson: So how has your
outlook on becoming a father
changed since when you were
first diagnosed until now?
Charlie: 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...
James Watson: The undetectable
equals untransmittable.
Charlie: 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.
James Watson: Right. And you
have a girlfriend, right?
Charlie: Yes.
James Watson: So what kinds of
conversations have you had about
having kids and fertility with
your girlfriend?
Charlie: 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.
James Watson: Right, and how did
that go?
Charlie: 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.
James Watson: That's saying
something.
Charlie: Yeah, I should probably
tell him that.
James Watson: Wow. He really
stepped up.
Charlie: Yeah.
James Watson: So as a patient,
what's the one piece of advice
you would give to doctors when
they're discussing men's
fertility?
Charlie: Can I give two?
James Watson: Sure. Bring it on.
Charlie: 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.
James Watson: 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.