Views from the front lines: Breastfeeding and HIV transmission

While it is recommended that people with HIV formula feed their babies in Canada, there is a growing movement to support people with HIV who wish to breastfeed  (chestfeed*). For people with HIV who wish to breastfeed, there are ways to greatly lower the risk of transmission to a baby, but the risk cannot be completely eliminated. CATIE talked to three people with expertise in this area and asked them to share their perspectives and experience related to the supports that parents with HIV need to make decisions around infant feeding and the challenges they experience related to breastfeeding.

*A note on language: Chestfeeding is a gender-neutral term for breastfeeding, which is preferred by some people. The term breastfeeding is used throughout this article, as this is the most commonly used term. When working with a client, it is important for service providers to ask them what terms they prefer, and to use their preferred terms.

• Sarah Khan is an associate professor at McMaster University, the associate medical director of infection prevention and control at Hamilton Health Sciences and the secretary of the Canadian Pediatric & Perinatal HIV/AIDS Research Group (CPARG) Executive Committee. 
• Jessica Whitbread is a woman living with HIV who openly breastfed her twins in 2016. She also advocates on behalf of women living with HIV.
• Alison Symington has both a Bachelor of Laws (LLB) and Master of Laws (LLM) degree and is a senior policy analyst at the HIV Justice Network.

See more in the article: “The risk of HIV transmission through breastfeeding: What we know (and don’t know).”

Sarah Khan is an associate professor at McMaster University, the associate medical director of infection prevention and control at Hamilton Health Sciences and the secretary of the Canadian Pediatric & Perinatal HIV/AIDS Research Group (CPARG) Executive Committee. 

1. As a doctor working with people living with HIV, how do you support people with HIV to make decisions around infant feeding? 

 As a doctor it’s my role to ensure the people living with HIV whom I care for have a good understanding of their diagnosis, its implications for themselves and the people around them, and how to optimize their care and quality of life. Infant feeding is one of the slightly more complicated aspects of living with HIV. The critical piece is that knowledge is power, and my responsibility is to ensure that people living with HIV understand the choices they have and the risks and benefits associated with any of those decisions. 

 For people living with HIV who are considering how to feed their baby, I think it’s critical that they understand: 

• why they may be counselled differently in Canada versus a low- or middle-income country 
• their options for feeding and the implications for themselves and their baby based on the choice they make 
• the risks and benefits of breastfeeding versus formula feeding for themselves and their baby 
• how HIV transmission occurs through breast milk, even if the parent has an undetectable viral load (because U=U does not apply in the context of breastfeeding) 
• how to communicate with friends and family about their feeding choice and avoid involuntary disclosure of their HIV status 
• that they can bond with their baby in ways other than breastfeeding 
• that we as care providers want to support their autonomy to make safe choices and ensure the parent and baby are followed closely and have the best outcomes 

2. What are some clinical considerations for people living with HIV who want to breastfeed? 

If a parent living with HIV chooses to breastfeed in Canada, there are several clinical considerations for their treatment, care and monitoring, including the following: 

• The parent should be fully adherent to their HIV treatment and have sustained virologic suppression as measured by the viral load in their blood (ideally from before conception). 
• The parent should have regularly attended standard follow-up visits for their prenatal care. 
• If after counselling the decision is to proceed with breastfeeding, the baby and parent will require frequent follow-up visits and regular testing, and the infant will be prescribed HIV medication as prevention for the duration of breastfeeding. 
• The parent and, where appropriate, their chosen support people need to be fully aware of the potential risk of HIV transmission with breastfeeding. Even with an undetectable viral load in the parent’s blood, breast milk transmission remains possible, although the risk is low. 
• If a healthcare provider is unwilling to support a parent’s choice to breastfeed, they should refer the parent to a provider who can continue to provide safe care. 

3. What has been the biggest change in the last 5–10 years around infant feeding for parents with HIV? 

More data have emerged that demonstrate that with optimal virologic control, improved access and adherence to HIV treatment and more patient-centred approaches to care, the risk of breast milk transmission is sufficiently low that parents who choose to breastfeed should be supported to do so. While the vast majority of pediatricians still recommend the zero-risk approach of formula feeding, it is important to respect the parent’s autonomy in deciding how to care for their baby. Both parents and clinicians want the best outcome for the baby, and we need to work together to achieve that outcome. 

Jessica Whitbread is a woman living with HIV who openly breastfed her twins in 2016. She also advocates on behalf of women living with HIV.

1. As a co-author of the Expert Consensus Statement on Breastfeeding and HIV in the United States and Canada, what do you see as the most common challenges experienced by people living with HIV if they want to breastfeed their babies?

The most common challenge is that many service providers and healthcare workers unfortunately don’t trust people living with HIV to make the best decisions for themselves, their children and their families. This stems from deeply rooted moral judgments shaped by classism, racism, sexism, education level, substance use and other factors. Ultimately, women living with HIV continue to be subject to heightened surveillance during pregnancy.¹ Look, I get it, healthcare providers have been told for decades that people with HIV must formula feed or they risk being reported to public health and child protective services. It’s hard to then accept and adapt to new evidence showing that other ways are possible. This requires a lot of time and energy to relearn and it can be hard to acknowledge that some of the decisions made previously were actually very harmful for families. This is a tall order for many people to work through. In addition, it takes much more time to have a conversation about the benefits and risks of infant feeding options — especially because it can lead to many other potential questions. Healthcare and service providers might not have time to explain, or might not feel comfortable to answer these questions, but it is their responsibility to do their homework and give their patients the information and support they need, or to give referrals to a provider who can support the person with their decision. 

2. What would you like to see change in policy or practice related to infant feeding for people living with HIV in Canada?

I personally had a very supportive experience with infant feeding in 2016 but that was not without repercussions for myself and the healthcare team involved. I had a team of amazing and open doctors and a very supportive doula who not only listened to me and my desires but were able to give me advice and information that was current and up to date. I think that their willingness to support had a lot to do with their frustrations in watching so many other women living with HIV struggle. I was very clear with my needs and desires; even if they had reservations at first, they saw it as an opportunity to try to make change. My experience was among the first in Canada where a team of healthcare providers were able to be public about supporting a woman living with HIV to breastfeed and asserting that parents should be part of the complex decision-making process around infant feeding. 

Service providers and healthcare workers should have clear tools on how to support parents around their infant feeding choices: ways to help families understand the benefits and risks and make informed decisions on what is best for their families. In addition, hospitals and clinics need clear protocols on how to technically support parents living with HIV (for example, I was allowed to pump in the hospital but not allowed to keep my milk in the shared refrigerator). Breastfeeding is not going to be the choice for everyone and that is okay. For those who choose not to breastfeed, free formula programs should be available (as they should be to everyone who needs support to feed their babies). But to make their decision, families should have the most up-to-date information to make sure that their decision is an informed one. 

3. As a person living with HIV who has given birth, what factors impacted your decision around infant feeding for your family, and how were you supported to make a decision?

The decision to advocate to breastfeed my twins was one that was made jointly with my partner. He said something very caring to me before we started the journey and it carried us in the decision. Our conversation went something like this:

Me: “We should talk about the “what ifs,” if the babies do end up getting HIV, because while it is unlikely, it could happen...”

B: “Well, it would just mean that there were two other people living with HIV in the house and I would be outnumbered by cute HIV-positive people. It would be okay, we would figure it out. I would not blame you. It would not be your fault.”

Our decision was based on a conclusion that we made after talking to other women living with HIV, talking to healthcare experts and reading the most up-to-date science and global guidelines in 2016. Working with a supportive healthcare team was very helpful, although not all of our team was on the same page. Some of the team focused more on potential benefits and risks to the children, while others looked at the family. An example of a difficult decision was that I did not want to give the children HIV medications to protect them from the tiny chance that they could get HIV from breastfeeding despite my viral load being undetectable, but this was pushed by the kids’ healthcare team. In the end, as time was limited, a concession my partner and I made to be fully supported to openly breastfeed was to give the children treatment for the duration they were breastfed. Therefore, my partner and I made a plan to breastfeed for the first three months only. I cried often during that time, feeling the pressure and conflict between doing what I felt was right and what I was allowed. And being a public advocate for women living with HIV, I was concerned to get it right for the next women who wanted to breastfeed after me — and that felt very heavy. I’m not sure if breastfeeding the twins was a good decision or a bad decision for me — in particular for my mental health — but it’s something that I decided was important.

Alison Symington has both a Bachelor of Laws (LLB) and Master of Laws (LLM) degree and is a senior policy analyst at the HIV Justice Network.

1. Have people with HIV been criminalized or punished for breastfeeding in Canada?

In the mid-2000s, a woman living with HIV in Ontario faced criminal charges after giving birth in a hospital and breastfeeding without informing the healthcare team that she was living with HIV. HIV was unfortunately transmitted to the infant. She plead guilty to the charge of “failure to provide the necessaries of life” and lost custody of the child.

This is the only criminal case related to HIV and breastfeeding in Canada, although child protection services have intervened in families where a parent is suspected of breastfeeding. Children’s Aid has a high level of involvement with families living with HIV, and surveillance of HIV prevention protocols figures into that involvement.²

The HIV Justice Network (HJN) monitors the criminalization of HIV around the world. We are aware of 13 women who have been prosecuted for breastfeeding or comfort nursing globally. Most of the cases have taken place in sub-Saharan Africa. Two are still before the courts.

2. What impact does the fear of criminalization or child services involvement have on parents with HIV? 

While there has only been one criminal prosecution related to breastfeeding and HIV in Canada, many community members are aware of the case (and perhaps believe that there are others). The criminalization of HIV non-disclosure in relation to sex also receives a lot of attention. As a result, many women living with HIV continue to worry about facing criminal charges in relation to bearing children. Not knowing their precise legal rights and obligations may exacerbate the worry. As has been documented in several studies conducted with women living with HIV in Canada (e.g., The Mothering Study, CHIWOS, WATCH), women experience significant anxiety and fear in relation to parenting. Many feel as if they are under constant surveillance.³

This anxiety is not good for families and may have additional negative effects. For example, parents may not be completely honest with service providers and healthcare workers, fearing the questions they ask or the information they reveal could be used against them. Parents may try to conceal the fact that they are breastfeeding (or not breastfeeding) from friends and family. As a result, they may not have all of the information and support that they need during this critical period for parent and baby.

3. In your opinion, what needs to change in policy or practice related to this issue?

The first thing I would like to see is widespread awareness and uptake of new HIV and infant feeding guidelines, which recommend that service providers deliver comprehensive and unbiased counselling on HIV transmission risk through breastfeeding, transmission prevention possibilities and a parent’s right to choose whether or not to breastfeed and to be supported in their choice. The guidelines state that breastfeeding while living with HIV and on treatment is not a reason to alert child protection. Service providers need to be aware of this, and breastfeeding parents should be assured of this, so they do not feel the need to hide their actions and can openly ask for information and support. I hope that these newly updated guidelines will inform and empower social service providers, healthcare providers and people living with HIV.

Secondly, parents have a right to comprehensive and accurate information to make fully informed decisions. Service providers and healthcare providers have a reciprocal obligation to provide the information. Full information includes unbiased information on infant feeding options and their associated risks and benefits, information on available resources and supports and information on the circumstances that would require a service provider to breach confidentiality and/or call a child protection agency.

Third, child protection workers need training with respect to HIV and human rights. Lack of information plus stigma on the part of workers leads to many negative outcomes for families affected by HIV.

The sexual and reproductive health and rights of people living with HIV have been limited and denied in a variety of ways over the course of the HIV epidemic. This is unjust. I would like to see healthcare providers, social service providers and child protection workers supporting mothers living with HIV and celebrating their ability to have HIV-negative children. The fear and stigma with respect to parenting and HIV must come to an end.

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