In many parts of the world where access to clean water, refrigeration, and medical care are limited, breastfeeding of infants is the standard of care for parents living with HIV. It has been consistently shown to promote the overall survival and well-being of HIV-exposed infants, with an extremely low risk of HIV transmission. Yet, in the United States and Canada, public health guidelines oppose breastfeeding for new parents living with HIV, out of concern for potential parent-to-child transmission.
In an effort to ensure that birthing parents living with HIV are able to make the best infant-feeding decisions for themselves and their babies, The Well Project and the International Community of Women Living with HIV - North America (ICW-NA) introduced an “Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada.” Authored by over 20 multi-disciplinary, multi-sectoral experts, the statement calls for parents living with HIV to have access to the information, support, and tools they need to make informed infant-feeding decisions.
Statement co-authors Martha Cameron, M.P.H., Marielle Gross, M.D., and Krista Martel spoke with Terri Wilder about the details and discussed why stakeholders across the HIV community are questioning whether U.S. and Canadian infant-feeding guidelines accurately reflect the current science on the risks, benefits, and unique challenges that parents with HIV face.
This transcript has been edited for clarity.
There’s a Long History of Telling Parents With HIV Not to Breastfeed
Terri Wilder: Thanks to everyone for joining me today. In thinking about the new consensus statement, I’m remembering in the late ’90s when I was a case manager at an HIV clinic and went to one of my clients’ home a day or so after she delivered a baby. She had been diagnosed with HIV several years before.
When I walked in, I saw her breastfeeding and had this sense of panic because I had always been told that women living with HIV should not breastfeed their children. I explained the chance of transmission via breastfeeding and ran to the store to get her some formula. Even though I calmly shared that information with her, she immediately said, “You know, I would never put my baby at risk for HIV. Nobody told me I couldn’t breastfeed.”
This was in the late 1990s. Has the message given to parents with HIV changed? What kind of messages should health care providers be giving to their patients who are living with HIV about breastfeeding?
Marielle Gross: I trained as a bioethicist prior to training as a gynecologist. It was in the beginning of my training as an OB/GYN that you learn all of the clinical protocols, but as a bioethicist, I’m constantly scrutinizing them. It was brought to my attention that without questioning it, we’re just taught that women living with HIV should be told not to breastfeed—and that everybody else, basically, should be told to breastfeed.
Something about how categorically different that was caught my attention. People were becoming aware that even if your client had been told that we recommend you don’t breastfeed or you’re more commonly, quote, not allowed to breastfeed, people still do it. I’m remembering this position being challenged based on the evidence by an individual living with HIV, also a Ph.D. and a research scientist. They were asking, “What are the ethics of this?” That’s how I got drawn into the story. What has always bothered me is when we have two people that are being treated differently, and not for good reasons. So I went on this deep exploration—and, by the way, this is all around the time that U=U [undetectable equals untransmittable] is ramping up and happening. We’ve known since the ’90s that these treatments work, but U=U meant a whole new level of awareness in the medical community of how well these combined regimens work.
In the face of that, I went on this deep dive, looking at, what about the babies? What is their risk? This was all in the context of the baby-friendly hospital designation, and what it means to be baby-friendly. I’m somebody who thinks about the words that we use, and how they frame the way that we think about ourselves and what we do. I’m thinking about my patients that have HIV, sitting in the waiting room for their prenatal visits. We do preconception counseling and assisted reproduction, and yet, they’re staring at this poster that says, basically, “If you’re a good mom, you’ll breastfeed your baby.” That’s the message that we give to everybody. But then we tell this one group of people that they don’t fit that. I began to be really concerned that essentially what we were saying was that they’re not a good mom, sort of by default, because they have HIV.
Stepping back to think about, as a clinician—and by the way, you asked me what I would say to my patients. I would say all these things to my patients, because the social and cultural context of our medical policies and practices is so relevant to how we should interpret them in our own lives. And understanding the perspective is really key.
You know, pregnancy is not U=U. The benefit of having a child so exceeds the alternative of potentially avoiding having a child because of fear of creating a child who will be at risk of being born with HIV [that this] makes it such that we support people living with HIV to have children. At this point, it’s well understood. And yet, I think the same exact thing applies, based on what we know now, for breastfeeding. If I have a patient who’s living with HIV, the first thing is, as a person who’s practicing in this medical system, I have to say, “The current recommendation is this, and this is why.” The key is that it’s possible to transmit HIV through breast milk. That’s piece-of-information No. 1 that the person needs. I would also tell them what they may already know about what’s done worldwide, and why it’s recommended worldwide for breastfeeding.
In fact, I would talk about why it’s recommended for breastfeeding in the U.S. And, by the way, all along the way it’s not just me telling them these things. It’s me asking them what they think about these topics that are relevant. Things like, what are their plans? If I ask them what their plans are and they say, “Bottle feeding, because I was told that that’s what I have to do,” I’d speak to that person about this the same way, because they, too, need the information. Just because they’re already making the decision that our institutions would agree with doesn’t mean you should not give them the information they need to make that decision truly informed.
At the end of the day, there are risks. I would explore them in more detail, share what I think the relevant pieces of information are, share where the real breakpoints are, in terms of how hard it is to maintain viral suppression when you have a newborn, and how that really puts people at risk of a flare and transmission, and how, even if you are perfectly suppressed, mastitis can increase the risk. And that’s a very common experience. Then there are all these other things about how hard lactation is, not to mention, feeding exclusively versus mixing.
The long story short is if I have a patient who’s pregnant, we need to talk about how they’re going to plan to feed their infant. They deserve to know what’s recommended, why it’s recommended, and other pieces of information that are relevant to their decision-making.
Wilder: When I looked at the consensus statement, it looked like it’s time to question the relevance of telling people that they shouldn’t breastfeed. While we may not have study after study after study, looking at people living with HIV breastfeeding and the rate of transmission as they’re undetectable, it is something that we need to consider as people with HIV have children and have families. It brings up historical precedents of policing bodies, particularly policing bodies of women.
Gross: Right. This, to me, is the modern equivalent of telling a woman living with HIV who gets pregnant that they should terminate the pregnancy and perhaps consider a hysterectomy at the same time.
Martha Cameron: It is multidimensional. You are talking about the historical context, but typically, a woman living with HIV would come with those dimensions. There’s the dimension of women having been left out of clinical trials in the beginning because of their ability to have children. There is the fact that it wasn’t just policing that happened, it was also that there has been forced sterilization on women living with HIV so that they would not have children.
And then there is the advent of the prevention of mother-to-child transmission. Proven research has established that there is a way in which you can prevent the mother transmitting HIV to the child. And maybe I can mention, by the way, that I’m an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation that does this research. Even after that advent, we still find this language, or the policing, or the general stigma that is associated with women living with HIV—and a lot of it coming from providers.
This is personal to me. I’m a woman living with HIV, and I have had two children. My doctor of my child who was born in the U.S. (my first child was born in Africa) actually very blatantly told me that I had no business having children as an HIV-positive woman.
Wilder: I’m glad you brought this up. I’m wondering, does this stem from structural racism? Anti-Blackness? Is it gender bias? And is it all intersectional?
Cameron: Absolutely, it is. When you look at HIV in this country, the race that is affected most is people of color. Women of color are affected most by HIV. The data will also show that a lot of these women are women of low socioeconomic status. And so, you find that those layers are in there.
Another dimension—and Dr. Gross alluded to this—is the cultural aspect. Some of these women may be of African descent, like myself. I really believe that it would have killed me more not to have children than just having the virus itself.
But I really think when it comes to the provider and the delivery of their services, it should not be about color and race. It should be about women’s autonomy and the idea that they should be able to choose, and the idea that they should be provided the support and information that they need. The way I was provided the information about breastfeeding, it scared the daylights out of me. Still, I made the choice not to breastfeed.
But the whole bringing everybody together is to say, “How much really of this data shows the transmission?” It was the same with U=U. There was a little percentage that people used to justify that U=U did not really exist. And in the same vein, what we said in our consensus statement is that in low-income countries, breastfeeding is the standard of care for women living with HIV.
How many of those have transmitted the virus to their children, and how significant is that, in terms of what we can say?
The idea of what we’re trying to do is push the data enough to where we can get a consistent analysis, a consistent conclusion, as to what this really is. Then, in addition to that, give women the support that they need to be able to make the decision.
When Dr. Gross spoke about, “This will happen when you’re breastfeeding,” or “This will happen when you’re pregnant,” the best thing happened to me. I was very overwhelmed after I’d had the baby and there were so many things going on. I had the support from my family and my husband, but I didn’t really get that support from medical providers saying, “This is what you should be doing,” or, “This is how you can make this easy,” and so on and so forth. That’s what we’re shooting for. That’s what we’re trying to achieve.
It’s a Provider’s Role to Ensure Parents Understand Both the Risks and Benefits of Breastfeeding While Living With HIV
Krista Martel: One of the things that struck me, and honestly, that made me so passionate about this—and it came early on in this whole process—is their work, done by people like Judy Levison and various people in our group, both from the U.S. and then also separately in Canada, to update the guidelines to say, “If a woman chooses to breastfeed, these are all the things that you can do as a provider to support her decision.” However, none of that translates to real life. Very few—including Heather O’Connor, who now works with ICW and is a blogger for The Well Project—push the envelope. There are others, but very few come forward. Most women living with HIV, the thought of breastfeeding in the U.S. and Canada brings up the concern that their babies are going to get taken away by someone. It could be their doctor, or OB/GYN, or their pediatrician. There could be a visiting nurse or a case manager who doesn’t understand and can call Child Protective Services. That fear of having your baby taken away precludes these types of things.
In terms of what the guidelines say, even though it says very clearly, “This is the recommendation, but if a woman does [breastfeed] or there is a decision to do this, here’s what you do,” none of that necessarily translates unless there’s a really comprehensive plan, which has happened in different places. There are supportive doctors and opinions out there, but none of that really translates.
So, one of the things that I think we’re trying to do, in addition to a million parts of this, is to work on that. I don’t see in the near future that we’re going to update the guidelines and say, “OK, breastfeeding is 100% risk-free, and you can do this.” But we would like to at least start doing the education with providers to better understand this, better understand the risks in women living with HIV, and push for more research—and make it so that this is not the overwhelming fear. If a woman decides to make the decision and she’s got all the information, and she’s got the support of her health care providers, she is not going to worry about her child being taken away for child endangerment. That is an overarching part of this in higher-resource countries.
Gross: As a bioethicist, I think about autonomy. It simply is not a freedom of choice if you make that decision at the peril of losing custody of your child. That’s not autonomy. And furthermore, in a wider context, I believe fully in empowerment of people to make their own health-regarding decisions.
But the way that we use “choice” and “autonomy” in terms of what women do, particularly when they go against the health care establishment, particularly when we think of the other context in which “choice” is used, it actually ends up becoming an undermining argument, or subtly or overtly undermining the extent to which the decision regarding how they feed their child could be reasons from the most information possible in the circumstances that they’re in.
To me, saying this is about autonomy—yes, of course we want people to be able to decide what they think is best for themselves, their child, their family—but to make it about choice, especially the language around choice, I think significantly discounts the extent to which this is a decision that people make because it’s healthier. We’re also, by the way, shoving breastfeeding down everyone else’s throats, even if they have absolutely no interest in it, because of how many health benefits come from breastfeeding, not just for babies, but for moms as well. It kind of trivializes it even to call it “choice” when it’s something that your body was designed to do.
And to me, in terms of the control and policing language, what really struck me as a clinician was to step back and reflect on the fact that I could follow my society’s guidelines in telling someone not to do something that their body was made to do, that is so natural and so biologically driven. And that if I’m going to tell them not to do that thing, I need to have a damn good reason. And we simply don’t have that.
Given what we know about how low the risk of transmission is with viral suppression, and given what we know about all of the benefits of breastfeeding—even for infants alone, forgetting the women for a second—I just don’t think we can say that any individual child will be more benefited or harmed by one or the other. It seems like, given the consistent suppression, it’s at least a potential that that individual child will be benefited, on balance, because they’re very unlikely to get HIV. They’re very likely to suffer both common things, like ear infections, and more uncommon but deadly things, like necrotizing enterocolitis for premature infants, or sudden infant death syndrome, if they don’t breastfeed.
I think that it’s so controlling of health care as an institution to categorically tell people not to do this thing. One of the things that I want my colleagues to think about is what it really means to not just blithely say, “We recommend that you don’t breastfeed,” or even, “You’re not allowed to breastfeed,” and worse. You immediately put everything that their body might be trying to do at odds with their health care providers. It creates an essential form of conflict, which is why we have to discuss the recommendations with the patient: “What are you thinking about this? What is your understanding of risks and benefits regarding HIV with breastfeeding? But also regarding just breastfeeding?”
When It Comes to Supporting New Parents, Language Matters
Cameron: I think this is what leads a lot of women to secretly breastfeed, like I alluded to earlier—because we understand even when we’re being prepared for motherhood that breastfeeding is the best, right? Both in terms of benefits for the child, and even for the mother, too, there are some benefits there. But mostly for the child in terms of the immune system, allergies—all the kinds of things that we hear that they get from breastfeeding—that, to me, it was very difficult to believe that I would deny my child those natural benefits that far surpass bottle feeding. This is the way I have been raised and the way I have been trained, to understand breastfeeding as a mother.
Then there’s also that connection between the mother and child that, for the longest time, I felt like I had completely destroyed part of my relationship with my child because I never got that through breastfeeding. Of course, that’s not true. My children are very well-connected with me, even though they were bottle fed.
But I think what it eventually boils down to is this idea that we need to get to the bottom of the data, and we need to allow women to understand the choice that they’re making with a very informed background.
One of the questions that you asked prior to this discussion, Terri, was why we insist on saying women and not the birthing parent. It’s an important question because there are gender nonconforming people that are having children. We do not want to repeat the same mistake of stigmatizing and discriminating against anybody that would want to give love to a child, whether they gave birth to them or not. We want to ensure that not only do people have the information, but also the support. I can tell you that one of the things that we hope to do at the International Community of Women Living with HIV is to hopefully create a system that helps mentor peer-to-peer and educate women about the whole process of motherhood, breast or chest feeding, and working through being able to raise a baby as a mother, working with providers. If they’re not, as Dr. Gross was saying, language-friendly, we will be able to put resources in their hands that will help them support women living with HIV through this process. As Krista said, it might be a while before we’re able to change guidelines, but we can do something in my language by next Tuesday.
Gross: I so agree. We know enough to do better than we’re doing. And we will never do the studies, those hypothetical studies, in the United States and Canada, when breastfeeding is not recommended.
I actually think, just as a brief comment about the language, we specifically didn’t remove women from the specific mention because of the gendered nature of a lot of the violence and the other things that we’re working against. As an OB/GYN and women’s health care provider, when I first started being conscious of gendered language, I was, “How can I, as an OB/GYN, possibly avoid gendered language? I do women’s health!” I actually think that that statement, under Krista and your whole team, is such a beautiful example of how it can be done, of how you can not exclude women and remember the importance of thinking about women, specifically, but also be inclusive. And the more I’ve done these tiny, little changes to my language in my clinical documentation, for example, or my writing, the more I realize that there are so many instances of gendered language that are unnecessary.
Martel: That was a really interesting part of our process, because it’s two organizations that represent women. And for The Well Project, when we say women, it’s inclusive of cis and transgender women. Women have been so underrepresented in this epidemic. This is part of why there’s no research here. You have 20-something brilliant networks reviewing this and giving feedback, and trusting whether we say “women” here or “birthing parents.” We’ve spent hours going through this because of course we want to be inclusive. But at the same time, as we get more inclusive, and for maybe the people that are looking at this, if they don’t see women as part of this conversation in that terminology, it could lose some of the forward motion that we’re trying to promote for women living with HIV.
So, we basically went through different places in the statement where we felt like birthing parents is appropriate because it’s encompassing all. Then there were certain places where it was very, very specific to women, and we needed to say that, and then include “and other birthing parents.”
The only other thing that I would add to what both of you have said is that in this presentation we did at USCA [U.S. Conference on HIV/AIDS], we discussed the health benefits to woman and child of breastfeeding, minus HIV, and the potential long-term risks of not breastfeeding to woman and child. Layering the long-term health risks and potential benefits to combat those risks in the population that’s most affected in the United States, which are Black women living with HIV—are we doing serious harm by preventing breastfeeding amongst [women living with HIV] in the U.S. and, potentially, Canada, too? What are the long-term harms or benefits that we’re kind of avoiding or not actually embracing with what we’re doing here?
Next Steps: Reducing Harm and Pushing for More Research
Wilder: The consensus statement has already had many organizations sign on and endorsing it, as well as many individuals. What is it that you want people to do after they read the consensus statement? And what are you hoping will be the outcome of organizing around this consensus statement?
Martel: In the consensus statement itself, we are asking people if they’re interested in joining a list, for when we start moving actions forward. We’ve also asked if people are interested in being included in a working group and being more active in this work. But we’re in our really early stages right now, to be honest. But, as we gain momentum, the sign-ons will be a vehicle for us to get additional funding for our collective organizations to work on taking it to the next steps of recommendations laid out in the statement and to move some of those forward.
Our ultimate goal is to use this as a launching pad to see some of these other parts forward. We started with a very small group. It was intentional because we didn’t have a lot of funding and time to figure all of it out. But we are looking at
growing the collective interest in this. And hopefully some people that may be part of the group will also be able to use this to push their work forward.
Gross: Telling women what to do with their bodies, specifically telling them not to breastfeed, is harmful. It has harmful health effects. We know, for example, that women’s health is affected if they don’t breastfeed. Every year in the U.S., more deaths among women are attributed to suboptimal breastfeeding than deaths among infants. That’s pretty powerful. It’s because of a combination of the cardiovascular disease, diabetes, stroke, heart attack, reproductive cancers (ovarian, breast, and uterine cancer), not to mention the obstetric-related risks of pregnancies [spaced too close together]. And that’s just the health risks. That’s not talking about the harms when you alienate people from the health care system, all the other things that current guidelines do. So, that’s a big takeaway; there’s a reason why we recommend breastfeeding for everyone else. My hope would be that people will question the basic structure of how we approach this issue.
Cameron: As women living with HIV, we’re looking forward to a time when, especially for the generation coming after me—and this is why I’m talking about mentorship of younger women or people coming behind me—we would like to remove the stigma that is associated with generally HIV but specifically HIV and birthing and breastfeeding. That has led to a lot of mental health issues. A lot of women just don’t believe they can have a normal sexual and reproductive health life, even with all the trends we are able to show. I think that will be so important for this generation coming forward.
Even if it takes a minute for the guidelines to come up, it’s important for people to know that they don’t have to self-stigmatize when they have HIV. They can look forward to relationships that are free of stigma, and they can, in some form or fashion, have a family of their own. Those are things that have plagued women living with HIV historically because of language and what the science basically points to that may not be true.