19. S2 Episode 9: Infant Feeding in the Context of HIV

Dr. Rupeena Purewal invites Dr. Sarah Khan, Infectious Disease Specialist and Assistant Professor in the Department of Pediatrics at McMaster University, to discuss infant feeding in the context of HIV.

Episode Transcript

(00:00):
Thanks for joining us again at the Canadian Breakpoint, a Canadian infectious diseases

(00:12):
podcast by Canadian infectious diseases physicians.
I'm Summer Stewart, back again with Dr. Rupeena Purewal, pediatric infectious diseases physician
from Saskatoon.
In this episode, the Canadian Breakpoint invites Dr. Sarah Khan, pediatric infectious disease
specialist at McMaster University in Hamilton, Ontario, to discuss infant feeding in the

(00:34):
context of HIV.
Dr. Purewal.
Hi, welcome to another episode of our podcast, the Canadian Breakpoint.
Today, we have a very special guest with us, Dr. Sarah Khan, who is a pediatric infectious
disease specialist and associate professor in the Department of Pediatrics at McMaster
University.
She's the associate medical director for infection prevention and control with Hamilton

(00:58):
Health Sciences.
She completed her pediatrics residency and master's in health research methodology at
McMaster, an ID fellowship and CTN postdoctoral fellowship in HIV at the Hospital for Sick
Children.
Her scholarly focus is in antimicrobial stewardship, infection control, and infant feeding in the
HIV context.

(01:19):
So thank you so much, Dr. Khan, for joining us today.
And today we're going to be talking about a very important topic, which is regarding
infant feeding in the HIV context, which as we just heard, Dr. Khan is one of our experts
in this field.
And so before starting the podcast, we do want to give a disclosure that everything

(01:40):
we'll be discussing today will be solely for informational purposes only and not to coerce
or promote an idea or product.
Also, this topic is evolving.
And when the consensus recommendations for infant feeding were established, CPARG and
other members of the medical community involved in these guidelines agreed that as new evidence
emerges, there will be ongoing evaluation of these recommendations.

(02:05):
So at this time, these recommendations are based on expert opinion and not specifically
on evidence-based medicine.
Also, depending on the jurisdiction that you're practicing in, these guidelines may vary.
These guidelines are solely developed as a guidance for families who may have the option
of infant feeding with breast milk as opposed to exclusive formula feeding.

(02:26):
This assessment is based on a case-by-case assessment and requires the involvement of
a physician who's familiar with risk assessment in HIV care.
Exclusive formula feeding remains the preferred method of infant feeding in the context of
HIV.
However, today we're going to discuss the approach to counseling a family or mother

(02:46):
or mother of childbearing age for infants who are living or mothers who are living with
HIV and would like to know the options of infant feeding.
So thank you, Dr. Khan, for being here today and discussing such an important topic with
us because for many years prior to this, we didn't have much guidance.

(03:11):
And a lot of our centers have been providing care for mothers with HIV, but do not have
really the other expertise or really an approach to this situation.
I think it's coming up more and more.
So without further ado, I do want to start by just kind of discussing why these consensus
recommendations or why do the committee members decide to come up with these consensus recommendations

(03:36):
if you can just speak a little bit about that.
Yeah, thanks so much for having me and discussing this topic.
It's very near and dear to my heart.
And I think it's because this conversation has really evolved out of the realization
that the community really had a lot of questions around this issue, but there was a lot of
stigma about even talking about it in our clinical conversations.

(03:59):
And so I think the committee had decided to come up with these recommendations really
from a call from the community that we need more information, we need clarity on what
is and isn't appropriate, because many women may have delivered in different contexts and
be counseled very differently in different settings.
And then they arrive in our clinical settings here in Canada and are told potentially very

(04:22):
different guidance.
And I think until there's clarity and there's really fulsome discussions with the community
and their respective providers, are we really sort of missing a big part of what's so important
to women living with HIV in their mothering experience?
So I think it sparked from a call from the community, but I think it was recognition

(04:42):
on the provider side that we need to understand this issue better and fully unpack it.
And then I think the last sort of element to this was aid service organizations also
lack the language, the resource and how to have a fulsome conversation, because there's
such an integral part of women in their pregnancy planning and their postpartum experience.
And if all of these spaces aren't really places for this kind of dialogue to happen, you know,

(05:07):
that begs the need for, you know, an in-depth and evidence review.
And I appreciate your intro to this podcast around its expert opinion, looking and leaning
on the evidence we have to date.
So I think that's sort of how I would summarize where and why this came to be.
I'm probably one of those health care providers and community members that appreciate such

(05:29):
guidelines coming out, because we are facing questions in regards to this.
And you make a very valid point about, you know, where we have a lot of immigration to
Canada and so there's different practices.
And I think so a lot of these questions will come up.
And so it's nice to have an approach.
So I think before we start with the actual approach and kind of how and what context,

(05:53):
how do we go about this for our listeners, because they may not be familiar with this.
Can we just touch on some of the risk of transmission that we are known to us in regards to formula
feeding versus breast milk?
Yeah, that's I think integral to this conversation, right?
Because I think at the end of the day, that's what everybody wants to know.

(06:14):
What is the risk?
And I think if we kind of take that step backwards and we talk about vertical transmission in
general, if you offer no interventions, you know, we talk about a 10% risk of in utero
transmission, and then around 10 to 15% from delivery alone, given the, you know, sharing
of secretions and blood crossing different borders.

(06:34):
And then again, with no intervention, breastfeeding has an additional 10 to 15% risk.
Now obviously, we do so much to prevent that risk and bring that sort of number from 25%
down to sort of, and I'll land at sort of between 0.5 and 3%.
And I'll get I'll break down those numbers a little bit more for you.
So there have been a few systematic reviews, some commissioned by the WHO to look at, okay,

(07:00):
forget in utero, forget delivery, what is the breast milk risk of transmission in a
well controlled mom with an undetectable viral load in pregnancy?
And again, recognizing most of this data comes from low middle income context where breastfeeding
is sort of part of what is part of the care for women living with HIV.
The risk is quantified at depending on sort of what duration you cut off breastfeeding

(07:23):
at terms of six months or 12 or 18 months, anywhere between sort of 0.4 to 3%.
Now where and why is that sort of window so wide?
Because we know that virologic monitoring that might be happening may be different from
study to study.
We know that, you know, this is mostly done in a trial setting, which may differ in real
world context.

(07:44):
We know there are different ART regimens used in these different trials, there's different
prophylaxis offered to infant or not at all, depending on the trial.
And so there's a range of what we describe as the risk.
It's very much dependent on the duration of breastfeeding.
And then there are a variety of factors that could sort of cause a blip, if you will, in
terms of the risk of transmission.

(08:05):
And those are sort of higher risk scenarios we allude to in the guideline.
But if you're sort of going to ask for a higher number, it's somewhere in that range, 0.5
to sort of 3%.
And if you want a little more specifics, if we talk about the first four to six weeks,
there's some data to suggest it's more like 0.7 to 1% per week, and then that risk drops
off significantly to sort of 0.7% per month.

(08:27):
And that's also partially related to breast milk composition in early postpartum phase,
colostrum versus sort of later phases of breast milk, including the form milk and hind milk.
So there's so many variables to consider.
That's why this data is limited by many of those factors.
But that's the best we can get to in terms of quantifying, recognizing it's not quite

(08:48):
the same risks we might see in our context with differences in monitoring.
Okay.
And like we mentioned before, kind of depending on the jurisdiction you're practicing, there
might be different medication, there's different approaches.
And so those risks can vary.
So in terms of when a family or a parent asks a prenatal physician or an obsgyne, questions

(09:13):
in regards to infant feeding options, can they use their own breast milk in the context
of feeding?
How would you approach the situation?
And so what factors do you think that those physicians and those caregivers need to take
into account?
Yeah, thanks for this question.

(09:33):
I think this is probably the most important thing, that message that needs to kind of
go out.
And I think you highlighted a really good point.
This is all about setting us up for success, setting everybody up for success.
And so making sure these conversations happen as early as is reasonable in pregnancy, and
really with both the maternal and the pediatric providers that will be involved in this conversation.

(09:56):
Because there are multiple players that are part of setting this up for success.
So I think that's kind of a key message I'd want to get out.
Okay, so we've got all the people at the table, and we're starting to have this conversation
and we really want to have it in the depth that every woman should be counseled on to
sort of help navigate this complicated decision.

(10:17):
I think there's probably about sort of six key things that we agreed as the group that
we would really hope are part of these conversations.
And one is that one we touched on already, you know, why is there a difference in guidelines
in high versus low resource or low middle income contexts?
Because I think a lot of women come to this table with sort of this, do you guys in this

(10:38):
context just not get that it's possible?
And that we've heard that from women.
And I think that's a really important question that we sort of need to bring to light that
there's a reason why there are differences.
And it's because we're all sort of looking to the best outcome for mom and baby in the
end, right?
And most of the trials are based on HIV free infant survival and the recognition that there

(11:00):
are a variety of causes of infant mortality in low middle income contexts and why breast
feeding is actually preferred because of malnutrition, the dysentery, the challenges of getting potable
water, right?
And so explaining, I don't know if you have to go into AFAS criteria, accessible, feasible,
affordable, safe and sustainable, but really the point being, yes, you may have been counseled

(11:20):
one way and one pregnancy.
And this is the reason why it's different in low middle income contexts.
And the reason why we suggest or recommend formula feeding for women living with HIV in
high resource context is because it eliminates that risk of postpartum transmission.
Not to say that's the only sort of way to go, but this is why there are differences.
That needs to be sort of laid plain a priori.

(11:43):
Once you've sort of been able to get through that part of the conversation, I think it's
important to talk about, you know, okay, so what is the risk and why is there a risk of
breastfeeding transmission if a woman is undetectable, right?
Because I think that emerging conversation of U equals U for sexual transmission is so
important and is such an important element of HIV education, but it doesn't necessarily

(12:07):
apply in the breastfeeding context.
And explaining why that is, because we know from some of the breast milk science that
has been done that even a woman with an undetectable plasma viral load may have cell associated
virus.
And cell associated virus means those T cells, those white blood cells in breast milk that
are such an important part of why breast milk is good for sort of the immune system of the

(12:31):
infant is also why HIV transmission could be occurring because yes, antigen virus are
effective and reduce cell free virus, but they do not eliminate cell associated virus.
And because there's such an important immune component of breast milk, those T cells are
there and those T cells can actually be activated through the process of lactation.

(12:52):
And so again, those T cells can sort of be turned on and be producing more active HIV
upon lactation and upon ingestion by the infant.
So explaining why virus can be in breast milk when it's not detectable in plasma.
And then all the other elements that can further increase the immune response either in the
breast component like mastitis, blocked ducts, cracked nipples or inflamed nipples and similarly

(13:17):
immune activation or mucosal inflammation in the baby.
So oral thrush, HSV stomatitis, gastroenteritis, all of those infections that could happen
to any baby that could further increase the risk of cell associated virus transmission
or even cell free virus transmission into the infant's plasma component.
And so I think just to sort of in as lay terms as are possible, and I know I'm talking provider

(13:41):
to provider here, so obviously different language is necessary.
There's a lot of really helpful resources I'm sure we'll chat about at the end that
kind of explain this in a really sort of easy way for patients to understand as well.
But I think guidelines and the science of transmission are sort of point one we really
think are important to cover.
The other key piece would be, you know, what are the types of infant feeding?

(14:02):
So there's exclusive breastfeeding, exclusive formula feeding, and then there's mixed feeding.
And sort of the general consensus that mixed feeding may actually be a further increased
risk of transmission because of multiple antigenic exposures to baby and that increased sort
of potential immune response you might see and why mixed feeding should be avoided as
much as possible in terms of if we are talking about breastfeeding potentially.

(14:27):
I think the other sort of important element of that is really sort of walking through
a woman walking through your patient around what it might look like if you formula feed
and how you can, you know, safely access formula.
Most provinces not all have free formula for women living with HIV for a full year.
And so making sure they know how to mix formula, how to safely clean bottles like some of the

(14:50):
stuff we take it for granted.
But you know, women have voice that like, I didn't know what to do.
I was just told this is your formula, figure it out.
And whereas there's a lot more supports for breastfeeding for the general population.
So we should be offering similar degree of support for women that may choose to formula
feed.
And the other element I'd add around what it might look like is can we do lactation

(15:12):
suppression?
Will that help?
Because you can take cabergolene, a medicine shortly after delivery, so you can kind of
shut down breast milk production.
So there's not that added element of some women have described it as trauma that they're
you know, lactating, but they can't feed their infant.
And that's, you know, a real issue that we can address, like we can manage that for women.
And then also sort of reduction of engorgement and all the other sort of physiologic processes

(15:36):
that happen in a woman that is not going on to breastfeed.
So I think walking through what it can look like if you formula feed, and then similarly
walking through what is essential that we have to have in place if you choose to breastfeed.
And that would be the importance of talking about, we really need to ensure that you're
going to be able to take your ART after delivery, because life gets busy after you have a baby,

(15:58):
right?
We're not just talking about the you know, the mental health component of this, but also
like your sleep, your sleep deprived, like you're stressed out, you have a whole other
human to be managing and your health, you know, is also critically important for baby's
health, right?
And so making sure women can continue on their their ART, because that's kind of criteria
one.
And then also two being, you know, what is it going to look like around getting prophylaxis

(16:20):
into infant because we are recommending medications for baby, triple therapy for the first four
to six weeks, and then ideally monotherapy if everything is continuing thereafter.
So making sure you're going to be able to kind of continue to get meds and give baby
meds.
And then similarly, the frequency of follow up, this is sort of every one to two months
for mom to have a viral load done.

(16:41):
That's not common for most adults that are otherwise detectable.
And same for baby testing and blood work on baby because we have to make sure there's
no toxicity from the ART, but also that there's no transmission that's occurred because again,
treatment would definitely differ in that context.
And then the other element of, you know, setting a woman up for success.
So a lactation consultant is probably critical to make sure that mom knows how to how to

(17:04):
ensure that she's making good and adequate milk, baby has a good suck and swallow a good
lunch nipple health reduction of mastitis risk.
All of those elements are so important to again set this pathway up for success.
So I think those are really critical counseling elements that need to be clear for both pathways
that might evolve.
And then what triggers might merit a reassessment of the plan.

(17:28):
So you know, if you are running into issues of a blip in mom's viral load or running into
you know, serious mastitis, serious infection in baby that is now putting that risk number
we may have talked about earlier into sort of a risk level that maybe is not in keeping
with the goals of care from both the mom and the provider's perspective, but really laying
clear what this is going to look like and what might be pivots in our pathway around

(17:53):
when we may have to sort of consider stopping breastfeeding or you know, pumping and dumping
for a period until we can get things back in control.
There are strategies we can talk about, but I think everybody kind of needs to be going
into this eyes wide open with clarity.
And then can we feel that we really empowered a woman to make a fully informed decision
and make the choice that's best for her, her family and safest for sort of long term outcomes

(18:18):
for baby as well.
Yeah, and I think you make a really good point because even in my own practice, we see, you
know, sometimes we'll get a consult or we'll get involved very late in the course.
And at that point, it's, you know, the baby's delivered, the first feeding has to occur
very quickly.
And so I, we are trying at least in our province to, you know, educate our prenatal care providers

(18:42):
to say it's okay to actually do a prenatal counseling session with an infectious disease
physician there.
And we're more than happy to help with kind of talking about this risk of transmission
and really making the moms aware because I think there's sometimes lack of knowledge
on that side because, you know, it'll be my friend also did this, but not knowing the

(19:04):
extent of, you know, what the involvement is.
And I think that is always risk-first benefit for every case.
And that's kind of why it's really important to really have this already in place and set
up and really understand what are the reasons that mom is motivated to do this.
And I think that always helps with compliance, right?

(19:25):
And so, and then making sure that we're there along the way for the support.
So having lactation there, having all of, you know, mom knowing when she can or cannot,
like when is the pump and dump protocol have to kick in?
Because I think these are the challenges that we're facing in our communities.

(19:46):
And so I think really involving them early on, and like you said, when it's the right
time is probably difficult to tell, but once they start engaging, I think once you're entering
your third trimester, I think it's important to start having these discussions with the
moms.
Yeah.
You brought up a really good point around understanding the rationale or the motivations
for it, because sometimes those motivations, you can actually potentially provide other

(20:10):
strategies or solutions to get around it and fear of involuntary disclosure and sort of
extended family or cultural pressures that if I don't breastfeed, then everyone's going
to know and sort of ways or language you can provide that empowers a mom to sort of respond
to family members as to, yep, this is why I'm formula feeding and it has nothing overly

(20:31):
related to HIV.
And I think, you know, women may not be aware of sort of other strategies that we've used
in the past.
Something like, well, I required a lot of pain control after my delivery and that amount
of pain control was too high and too risky to breastfeed through.
And so unfortunately, I was unable to breastfeed.
There are ways sometimes that you can provide if you understand the reasoning why.

(20:51):
And I think that's so critical to this conversation.
And you also raised a really good point about making sure the right support people are there.
You know, if a partner is heavily influential on a decision around this, they should be
in the room, right?
Of course, based on what the woman is telling you she's feeling comfortable and safe with,
I think that's so important because it is a family-centered approach, this decision,

(21:12):
and we really should be sort of adopting that.
And I think really understanding the risks with mixed feeding is important too, because
I think a lot of us in the initial days, your milk isn't in, so they may get a little bit
nervous in terms of, is my baby getting enough feeding at this point?

(21:33):
And so in a normal situation, adding formula if they're not gaining weight is more realistic
of an approach.
But in this context, that's not really the approach.
And so kind of guiding and counseling around and really remembering that it's mom and baby
that we're worried about, right?
And so we need to make sure that mom feels comfortable.
If we do have to start weaning, we have medications, we can support her through the pain, et cetera,

(21:58):
of breast engorgement, that type of thing.
And then really understanding that there are risks for the baby if there is mixed feeding.
And so kind of emphasizing that.
That's what I've noticed in my practice too.
So in terms of most of our providers, they're probably familiar, listeners are more familiar
with understanding the criteria.
So we're really talking about low risk, undetectable viral load, the motivation to continue to

(22:24):
stay on antiretrovirals for the mom is really important because you really have to stay
undetectable throughout.
And then ensuring that they understand that there's blood work and antiretrovirals involved.
Are there any other criteria that should be met for women or for clinicians to kind of
say that, yes, breastfeeding, I can go ahead and have these discussions?

(22:45):
I think you kind of hit the nail on the head there around the adherence, the ability to
kind of have both the monitoring for both mom and baby throughout.
And then, you know, in some situations, add this as sort of a supplement to the guidelines
is for some women, you might want to have them sort of sign this agreement.
And it's not necessarily because, you know, medical legal from a provider side, it's for

(23:09):
the woman to really kind of be clear on what this is going to look like.
And also because there may be situations where if a mom ends up in a walk-in clinic or in
another situation, and then somehow breastfeeding gets disclosed, having a document like that
can actually empower mom to say, no, my HIV care providers are well aware of this.

(23:29):
And we've agreed on X, Y, and Z principles, and therefore there's no need for like CAS
referral or legal implications, which I think is another huge concern that the community
has around what is the potential risk of going down this pathway.
And so I think that's another, it's not a prerequisite, but it's something that may
empower sort of both parties to really feel like the depth and the understanding of the

(23:51):
things that have been chatted about are very clear to everyone involved kind of thing.
So that's something that may be an added consideration that can be helpful for both sides.
Yeah.
And I think it also prevents confusion because I've had sometimes providers call and say,
you know, I thought it was not recommended.
And so in this case, why is it?
And so I think obviously as we become more and more educated in this area and really

(24:15):
understanding this and having these consensus recommendations, I think it's one of the first
steps to really raising this question and bringing it up because I know when I did my
training in infectious disease, we didn't have a lot of recommendations or official
expert opinion on this.
So I think this document has definitely changed and helped my practice.

(24:37):
So I think it is probably the same for many of our listeners out there.
So going back to the consensus recommendations, we talked a little bit about after the counseling
expert, so with families and what the recommendations are in terms of like what this really means
for their infant.
We talked about blood work.
I think an important change for me in the recommendations was the preferred ARTs that

(25:01):
were recommended for the infant versus kind of the alternative recommendations.
And so for our listeners, because we're really used to having triple therapy, the entire
duration of breastfeeding, whether that's three months plus.
And so some of the recommendations, you did mention that the risk of transmission in that

(25:23):
first four to six weeks weekly is a little bit greater.
So coming from that standpoint, I can see why the recommendations were made, but maybe
we can touch on what is the preferred recommendation for the ARTs for the infant.
So what we had kind of landed on, honestly, this was not easy decisions to sort of land.
There was a lot of discussion that went back and forth on this.

(25:45):
In the end, it's interesting to sort of hear your perspective around like, I thought it
would be triple all the way.
And there were definitely folks on that side of the table.
We actually are considered the most conservative among the UK, US, and Canadian guidelines
with where we landed.
But where we did land, which was your question, is combination therapies, adipine, limivir,
and nevarapine for the first sort of four to six weeks.

(26:08):
And then as you alluded to, that being sort of the highest risk.
And then followed by monotherapy with nevarapine until four weeks after cessation of breastfeeding.
There are definitely alternatives.
And obviously you want to consider baseline resistance known in mom to factor into some
of your decision making.
We did land that way simply because we did want to have some degree of prophylaxis for

(26:31):
the infant, which is different than the US and the UK for sure.
But did the risk merit triple the entire duration and the potential risk of toxicity?
And also the reality that there may be situations where risk could kind of go up transiently
like we talked about.
And having that sort of safety valve of going back to triple in those scenarios was sort

(26:52):
of that medium ground we felt that was reasonable based on what we understand today.
That said, I think this needs to be reevaluated as we get more data.
And this is sort of what we landed and it's not perfect.
And one can definitely consider the alternate regimens that we propose, which as you alluded
to is triple the entire duration.
But I think that we did want to leave some leeway for a provider to consider individual

(27:15):
patient risk factors and factor that in of course.
And for somebody who practices this, I feel like one of the rate limiting steps of having
to stop breastfeeding is actually side effects from some of these medications.
And so really seeing that the consensus recommendations were kind of aiming towards reducing the number

(27:36):
of medications after kind of that highest risk portion of weeks.
I think it's nice to see that we have an option now.
Not seeing that any of the other medications, like Nevarapine, also has some risks, but
we see less bone marrow suppression, which is one of probably in my practice, probably

(27:56):
the number one reason I've had to stop and have mom wean breastfeeding.
And it's disheartening because they put in all this work and this effort and they agreed
to having the infant have such frequent blood work.
But then you get to this physiological nadir, which gets exaggerated.
And then the problem becomes you just have to come off because you can't sustain the

(28:20):
bone marrow at that point.
So is that something, was that weighed in when the recommendations were put together?
That was definitely a huge factor because what really benefit are we achieving with
the triple at that phase compared to sort of the risk of toxicity?
And so I think that played in significantly in terms of a rationale for are we attaining

(28:45):
that much more risk reduction by the addition of triple for the entire duration?
And so that was a huge factor as to sort of why we felt that the risk reduction was adequate
enough with Nevarapine alone.
And then I think we've answered some questions around when to obviously pump and dump and
when should we discontinue breastfeeding?
So I think where can we find these consensus recommendations?

(29:07):
Because I think having this document available is super important.
And then what other resources can we provide either families or providers to give to families?
So we definitely welcome readers to check out our published guidelines, which are in
Jami.
You can, I think, do a quick Google search.
That's how I typically stumble on them.

(29:30):
Yeah.
So just like Canadian CPARG infant feeding HIV guidelines, Jami, you can search that
up.
And then similarly, just to sort of see how other models exist, there's definitely the
WHO, the VIVA, and the DHHS guidelines for the provider sort of space.
And then in terms of patient populations, the OHDN and KD are actually currently working

(29:52):
on a more specific resources.
But in terms of what currently exists, VIVA has a nice little leaflet.
It's called Healthy Mums Healthy Tums that you can search up.
And then similarly, Katie has a prevention page on pregnancy and infant feeding.
There is a consensus statement out of the well project that speaks to some of this risk.

(30:13):
And that's another way to sort of look at this conversation as well.
But I also would urge providers to take a look at the mothering study as well, which
is now, I think, over a decade old.
But I think it's still relevant to these conversations.
And I think only when you start to understand the complexity of this issue, do you start
to see why this investment in time and energy around this is so important.

(30:37):
And I think the mothering study is sort of a seminal study that really hit the nail on
the head of how important of an issue this is for women and therefore as providers, how
much we need to start really speaking to this issue in more clear terms.
That's fair.
And I know that our listeners are probably asking, so how do we kind of what's the future
of feeding in this context, in the HIV context?

(31:00):
And is there something that providers can help with in terms of surveillance, right?
Because if there's ongoing, could we submit cases somewhere?
Is this in the works?
Great question.
So there was a case series that the Canadian data that was sort of pulled together and
published, we also contributed to a US paper that combined both the Canadian and US experience

(31:22):
around breastfeeding.
But you're right.
I think what we really need, and actually that's the last recommendation of our guideline,
is a true sort of fulsome data registry.
I'm really cognizant of the word surveillance in this context, but we're really sort of
trying to get to that point where we'll have a fulsome registry where we can really collect
these essential data points that can help us inform what is or isn't the best practice

(31:46):
here because what we have is expert opinion.
What we need is real world experience because a lot, as we mentioned, those RCTs, not in
our context, not necessarily generalizable to us, but we're all getting more experience
with this and from that we should all be learning.
And so we're working towards that.
We're asking PI for that funding.
But as HIV care providers, if you're asked to submit this data into a registry, we know

(32:08):
it's extra work, but we really think these data points are so integral to collect.
So we ask that you support any initiative if you're asked to collect some of that data
for this important evidence that's in evolution.
There are other elements that I think still are needed in terms of the breast milk science.
We need to know what is those risks in the first few weeks?

(32:28):
Is there a difference between warm milk, hind milk, colostrum?
What ARTs are truly getting through breast milk and what aren't?
What is the risk of resistance because of ART exposures to the babies?
So I think real Canadian or at least high resource setting data on this breast milk
science needs to be done.
And I think a lot of different groups are looking into that.
I think that's such important work that hopefully will get funded and supported by clinicians

(32:53):
like yourselves and in enrolling patients to these studies.
And I think that there's more to come.
I think that knowledge translation, how are we communicating this to our patients?
How are ASOs able to leverage and use this data in terms of really packaging this in
a way that's meaningful to the community and helpful to the community?
We need to have anti-racist and anti-oppressive approaches to this conversation.

(33:16):
There's very different cultural nuances that need to be considered and much, much important
social science work that needs to happen in that realm.
And I think, you know, we're all looking to the broadly neutralizing antibody question
and whether that will really make breastfeeding sort of simpler and easier.
So I think there's lots of exciting data to come.
And I think as HIV care providers staying up to date on this and bringing forward ideas

(33:38):
and contributing to this work is going to be so important.
Noah, fantastic point.
Yeah.
And I think, you know, and this is just the start of we've seen a lot of changes in HIV
care, especially in the pediatric world over the last few years, especially since I've
been practicing.
And so I think you make a really good point in staying up to date.
And one of our reasons for this podcast is to help our listeners do that.

(34:04):
And so we are so thankful that we had someone come from an expert opinion side of things
and really helped us understand some of the consensus recommendations.
And I think a lot of us, you know, don't have a lot of information in this field.
And so it makes that fear and we kind of stay within our boundaries to say, you know, this

(34:26):
is the information that's been provided to us.
This is how, you know, we've done it in the past, but remembering that there are newer
advances and that we should be keeping up to date with what the rest of the world and
then the rest of our country is doing as well.
So one of the reasons why we wanted to bring you onto the podcast and so I guess for kind
of last minute things for our listeners, is there anything that a key message that you

(34:51):
wanted to provide to our listeners who consist of HIV providers, pharmacists, those that
probably residents, medical students, really part of the learning community?
I think what I've learned so much in doing this work has been we need to be listening
to the community because they're the ones, their voices are asking these questions before

(35:14):
we even think about them, right?
And I think even in our clinical encounters, there needs to be a lot more listening and
a lot less talking.
And I feel like I talked through like a lot of things here, but you brought up that really
important point of like, what are the motivations that are driving these decisions?
Because until we understand what the community is facing and what their concerns are, are

(35:36):
we going to be able to sort of address or meet those needs in terms of the clinical
care component?
So I guess that's sort of a learning that I've continued to sort of do throughout this.
And I think it's that real engagement and partnership that's going to move this issue
forward and provide the best outcomes for both mom and baby.
And I think that's what everyone's goal is at the end of this.

(35:57):
Well, thank you so much, Dr. Khan.
We really appreciate you coming on the podcast today.
And hopefully we can have some future episodes if there's any other updates to the recommendations.
Thank you for the initial introduction to the current consensus recommendations.
And I'm sure our listeners are very pleased to hear that there is some guidance out there

(36:20):
and how to access it and some resources.
Thank you so much for taking the time today.
Great.
Thanks so much for the conversation.
Thank you, Dr. Pirwal and Dr. Khan, for this interesting discussion.
Have a topic suggestion?
Email us at thecanadianbreakpoint at gmail.com and follow us on ex, formerly Twitter, at

(36:41):
CA Breakpoint.
See you again soon at the Canadian Breakpoint.