Krista Martel; Marielle Gross, MD; Claire Gasamagera; and Ciarra Covin. Photo credit: Jenna Conley.
By Olivia G. Ford, Consulting Editor, The Well Project
Table of Contents
- Not breastfeeding can be extremely painful, emotionally and physically, for women living with HIV
- Part of shifting the conversation on HIV and breastfeeding will mean shifting our language and framing around the issue
- HIV stigma blocks shared decision-making, and affects how we perceive risk, in the case of breastfeeding
- People living with HIV need partners in health, not investigators in health
- More data on HIV and breastfeeding is critical. We can also use the data we currently have to guide decision-making while we work to expand the evidence base.
- Relevant Articles from The Well Project
- Additional Resources
When it comes to infant feeding, we often hear that “breast is best” for mothers who are able to breastfeed. In the setting of HIV, this recommendation holds true for women taking HIV drugs and their infants in resource-limited areas of the globe. This is because, in these areas, infants are more likely to develop, and even die from, diarrhea and other illnesses from which breastmilk can provide protection. Formula feeding also may not be an option in such areas due to lack of funds to purchase it, clean water to mix it with, or refrigeration to keep it fresh. Health authorities have determined that the benefits of breastfeeding outweigh the risks of HIV in areas where resources are constrained in this way.
However, in the U.S. and other high-resource countries, women living with HIV are told not to breastfeed their infants. Infant formula, clean water, and refrigeration tend to be readily available (although not always the case) in these countries, and the chance of a baby dying from illnesses like diarrhea is much lower. The guidelines are based on the belief that any risk of a baby getting HIV from breastmilk is not justified when parents can access alternatives. In part because of this recommendation, there is virtually no research on HIV and breastfeeding in high-resource settings. Further, guidelines around breastfeeding and HIV tend to exclude health and other considerations for breastfeeding parents, instead focusing largely on infant health and wellbeing.
In the era of Undetectable Equals Untransmittable (U=U) (the fact that a person cannot transmit HIV through sex when their viral load is too low to measure in their blood), more than ever, people are questioning whether these guidelines are still relevant. This is especially true considering that research from lower-resource settings shows extremely low risk of HIV transmission to babies when the breastfeeding parent is on effective HIV drugs.
How do current guidelines impact women's lives and their decisions? What are some important considerations when thinking about this topic - and how might our thinking shift? And what do people living with HIV and their providers need in order for the field of infant-feeding options to expand?
At the 2019 U.S. Conference on AIDS meeting in Washington, DC, The Well Project conducted a session where people living with HIV, clinicians, social workers, case managers, and others gathered to discuss these very questions as part of Prevention Access Campaign's U=U session track at the conference. Krista Martel, The Well Project's executive director, moderated and contributed to a dynamic panel featuring Ciarra Covin, A Girl Like Me blogger and mom to a 9-year-old boy; Claire Gasamagera of the International Community of Women Living with HIV and a new parent to two young sons; and Marielle Gross, MD, an obstetrician/gynecologist and bioethicist at Johns Hopkins University.
In the safe, confidential space created in the session, audience members living with HIV and working in the field were able to share their own frustrating, painful, illuminating experiences with this topic. The group discussed everything from how best to engage providers to expand their thinking about breastfeeding in the setting of HIV, to potential beneficial uses for pumped breastmilk besides feeding (for instance, in a baby's bathwater). Those in attendance also answered a brief, confidential survey to add to the base of evidence of community members' perspectives and needs regarding infant feeding information. The majority of respondents to the survey identified research on transmission and education for providers to be their top priorities in this area. Further, most indicated that, when they were preparing to have a baby, if they had the information presented in the workshop and their care team supported them, they would have chosen to breastfeed.
It is important to note that nothing in this document is intended to cast judgement on anyone, living with HIV or not, who has decided not to breastfeed, or who cannot breastfeed. But it is critical that decision-making regarding infant feeding be shared between a pregnant or lactating person, their care team, and any loved one they choose - and informed by awareness of the risks and benefits of all options. It is The Well Project's goal (and most survey participants agreed) to promote further research and discussion, as well as education for providers, on the topic of breastfeeding and HIV, so that women feel more supported when making those informed decisions.
Five key points driving the afternoon's discussion:
1. Not breastfeeding can be extremely painful, emotionally and physically, for women living with HIV
Covin and Gasamagera have both experienced the joyful aspects of giving birth to healthy, beautiful children who remain HIV-free. However, they also both shared the anguish and physical pain they felt at not being able to give their tiny new babies the milk their bodies had created. "When I would be taking a shower, my breasts would be filled with milk, and I would cry," Gasamagera remembered. "I would feel like the baby was going to die at any moment because, for me, what I know, babies are breastfed." Covin also experienced painful, engorged breasts that she was unable to relieve through breastfeeding. "I wanted to give him my breast," said Covin. "I should be enjoying being a mom for the first time, but I [was] beating myself up again for decisions that I made earlier in my life that are now impacting my newborn child that I cannot feed."
Gasamagera's frustration was compounded by the fact that, in East Africa, where she is from and where she was an activist for years, she has known numerous women living with HIV who were encouraged to breastfeed, in keeping with HIV guidelines for this area of the world. Now that she lives in the U.S., the opposite is true. Gasamagera loves her obstetrician - "he treats me like a daughter," she said - but she would have preferred being involved in the decision around how she would feed her babies. "I didn't feel room for asking questions," she said.
Eventually, she experienced postpartum depression; Covin did as well. Both women expressed that part of their distress arose from being told what to do with their bodies, without any discussion, during their pregnancies and after their children were born. "I always thought that I would be the one to dictate everything that happened in this kid's life," Covin recalled, "but immediately it was like, 'No, you can't breastfeed' - it wasn't even up for debate." The two women's experiences illustrate recent research showing that not breastfeeding can increase postpartum depression - especially in women who wanted to breastfeed, but did not.
Now in her early 30s, Covin is holding off on having another child, in part to see if guidelines or attitudes change so that she can breastfeed her next baby in a supportive environment. "I thought I was supposed to get that time in to cradle him in my arms," she said of her son; "but all that was snatched from me, from the very beginning."
2. Part of shifting the conversation on HIV and breastfeeding will mean shifting our language and framing around the issue
"Why are we treating people differently when people are the same, women are the same, infants are the same, breastfeeding is the same, HIV is the same? Why does it matter where you live whether or not you should breastfeed?" This was the question that first inspired Gross' research, as an OB/GYN resident, into the ethical dimensions of this issue. The numerous, documented health benefits to breastfeeding, both for people who breastfeed and for their babies, go beyond nutrition for the baby or quicker weight loss for the birthing parent. They are about deterring potentially life-threatening conditions in both, in the short as well as the long term. This is also true in resource-rich areas of the world, where the recommendation is for people living with HIV to not breastfeed.
In those same areas of the world, as noted above, HIV guidelines regarding breastfeeding tend to focus exclusively on infant health - specifically concerns about infant HIV acquisition. But breastfeeding significantly impacts women's health, Gross reminded the audience time and again. "It is not benign to tell a woman not to breastfeed - for her own health," said Gross. Women in the U.S. who did not breastfeed have been shown to have higher rates of breast and ovarian cancer (both in the top five deadliest cancers for U.S. women), metabolic syndromes like hypertension and diabetes, and complications in pregnancy or childbirth for future children. These are all major causes of illness and/or death in U.S. women. "I didn't even know that there were any benefits for a mom to breastfeed, or that we could negatively be affected if we do not breastfeed - that wasn't even posed to me," Covin remarked.
Further, it may not be accurate to talk about the recommendation for women living with HIV to avoid breastfeeding as a form of "harm reduction," because it frames breastfeeding as a harmful activity when it is a natural, though often complicated, part of parenting.
All that said, Gross commented during her presentation, when we talk about breastfeeding for women living with HIV, doesn't it make more sense to approach the issue from the perspective of risks of deviating from the norm (which is breastfeeding) than to always talk about the risks of engaging in a normal behavior?
3. HIV stigma blocks shared decision-making, and affects how we perceive risk, in the case of breastfeeding
"Everything we do [in the US] is custom: precision medicine," Gross pointed out - meaning treatment plans are tailored to individual people based on factors like their environment, behavior, and genetics - or at least this is the ideal. In prenatal care, this is made even more possible by the fact that providers see their clients often and tend to know them well. But in the case of breastfeeding and HIV, this is not the model: Women are recommended not to breastfeed across the board.
"Why, in this case, is it shotgun medicine?" Gross asked. As she elaborated in her presentation, this is not because we know for a fact that not breastfeeding will be better for infants exposed to HIV. We actually do not know that, because we have almost no evidence from high-resource areas to prove this is the case. "This is inextricable from the fact that we recommend against breastfeeding in these settings," said Gross. "It makes it kind of hard to do research, even observational research, on something we are telling people not to do." That uncertainty in the medical community about whether one approach or another will have better outcomes is common enough that there is a name for it in medical ethics: clinical equipoise.
In the context of clinical equipoise, explained Gross, the ethically responsible thing to do would be to gather all the information that can help a provider and their client decide on an approach, and make the decision together weighing the options, also known as shared decision-making. But again, instead women living with HIV in the U.S. are discouraged from breastfeeding. In effect, women are cut off from the opportunity to pursue different paths - including one that could potentially protect her and her baby from serious health conditions. "It's short-sighted that we're looking only at HIV as though it's the only risk that we're trying to reduce."
As Gross reminded listeners, there are a host of health conditions in mothers and infants in the U.S. against which breastfeeding may provide protection. This includes sudden infant death syndrome: a literal death sentence for more than a thousand U.S. babies per year (while the cause is unclear, breastfeeding has been documented to reduce risk). Still more troubling: Black women and other women of color, who are disproportionately impacted by HIV, also see higher rates and worse outcomes of numerous causes of maternal and infant illness or death that breastfeeding can mitigate. "Routinely recommending against breastfeeding for women with undetectable viral load on their HIV medicines may inadvertently increase health inequities rather than decrease harms," she noted.
So why is shared decision-making not promoted, when the strong evidence that we do have from low-resource settings for women breastfeeding on HIV treatment shows transmission risk to be less than 1 percent, and breastfeeding could stave off a number of other health challenges for women and children across their life span? As it often is, the answer is rooted in stigma surrounding HIV. Said Gross: "We have to think really carefully about how stigma about one kind of disease is making us weigh it differently."
A big concern with this issue is finding ways to gather observational data: in brief, finding women with HIV who would be willing to "come out," in a scientific and not just an informal, conversational setting, about their experiences breastfeeding - likely against their providers' recommendation - to learn and build awareness of actual benefits and risks.
During the question-and-answer period in the session, in her response to a question regarding how women might communicate their breastfeeding experience while remaining anonymous, Gasamagera offered an important reframing of the issue - from what women could do to feel safer sharing, to what providers could do to make a safer space. "As healthcare providers, the first thing you have to do is restore trust, so I can come to you thinking you are not looking at me as someone who is going to hurt a baby," she said. "Having HIV doesn't make me a criminal." Gasamagera related a painful story of having to consider holding back from calling her clinic when her baby had a health concern, for fear of being accused of hurting her child. "I need partners in health. I don't need investigators in health." Covin shared a similar fear earlier in the session when she once attempted to breastfeed her infant about a month after he was born. "It was too late; he didn't want it," she remembered, "but I was like, I can't tell anybody this, because I'm going to jail."
Martel also stressed that even with the support of some providers, others in the care system who are ignorant to this topic could put a woman living with HIV in danger with her area's child protective services, just for breastfeeding her baby. "It is a very real fear, and it has happened," Martel said. "It could be a visiting nurse; it could be a pediatrician; it could be just some random provider - even if everyone else is supporting this woman - that could just make the anonymous call saying 'child endangerment.'" Black mothers and other parents of color are already vulnerable to a range of forms of policing and criminalization due to race, gender, and class biases; HIV status adds another layer to that existing threat. This fear of criminalization for making choices to benefit the health of oneself and their baby, as Gasamagera, Gross, and others noted during the session, completely undermines a parent's autonomy. "It is not shared decision-making if you are afraid that you could lose your child as a result of breastfeeding," stated Gross. "It's not freedom of choice - and that's a problem, because we don't know what is better or worse for that child."
5. More data on HIV and breastfeeding is critical. We can also use the data we currently have to guide decision-making while we work to expand the evidence base.
Another frequent theme during the discussion portion of the session was what kinds of studies could be undertaken in high-resource areas to learn more about viral load in breastmilk, or mechanisms of transmission, to contribute to proving that breastfeeding ought to be an acceptable option for women living with HIV in those settings. While Gross acknowledged the vital importance of a wider evidence base around this topic, she stressed repeatedly that we also have study results available now that can be used by providers to inform and support their clients' choices.
"There are babies being born every day in this circumstance; they are not waiting for randomized controlled trials to happen," she asserted. "We have to use all of the things that we have now, and make them work to inform our decisions the best we can, understanding that they are not perfect."
She also offered an opinion regarding the effect that a different approach to breastfeeding and HIV might have on retention in care in the postpartum period, when rates tend to plummet after high levels of adherence to care during pregnancy. "I think that, if we were more unbiased and evidence-based and even-handed in our counseling and treatment of this issue, and let women guide the decisions, that we would capitalize on some of that enhanced motivation to remain adherent that we see in pregnancy."
When asked what she tells her own pregnant patients who are living with HIV, she responded with a potential model for other providers: "I tell them: These are the current recommendations in the U.S., these are the benefits of breastfeeding for you and for the baby, and these are the risks from breastfeeding of HIV - and what are your thoughts?"
- Conversations at Adherence 2019: Advancing Discussions of Infant Feeding Choices in the U=U Era
- Can I Breastfeed While Living With HIV? An Overview of Infant Feeding Options (fact sheet)
- Breastfeeding and HIV: What We Know and Considerations for Informed Choices (webinar)
- Spotlight on Heather O'Connor: My Journey with Breastfeeding and HIV (personal story)
- Breastfeeding with HIV: An Evidence-Based Case for New Policy (Journal of Law, Medicine & Ethics)
- Provider Perspectives Towards Infant Feeding Among Women Living with HIV in the United States (Journal of the International AIDS Society)
- HIV and Infant Feeding (World Health Organization)
- Breastfeeding and Postpartum Depression: An Overview and Methodological Recommendations for Future Research (Depression Research and Treatment)