HIV and infant feeding: A complex debate
There is a quiet tension that exists surrounding HIV and infant feeding. Although practices and recommendations vary around the world, breastfeeding is not recommended for infants born to an HIV-positive woman or trans man in Canada. Instead, HIV-positive parents are counselled to feed their infants with formula.
But I don’t think it is by any means a closed case, even in Canada. The truth is, the debate about HIV and infant feeding (particularly in Canada) has never been more complex. Like so many discussions related to HIV today, scientific advances are changing the way we talk about and consider possibilities. New questions about treatment as prevention, pre-exposure prophylaxis (PrEP), and even levels of ‘risk’ seem to emerge every day.
But even ‘risk’ is all too often narrowly defined as the risk of HIV transmission. What about the risk of a parent having their HIV status disclosed by formula feeding? What about the risk of legal or child protection involvement if breastfeeding is suspected? Our discussions of risk with clients must take into account the real and perceived risks of both breastfeeding and not breastfeeding.
In the context of infant feeding, questions about ‘risk’ emerge for often overwhelmed new parents who need some advice and even answers. That is the goal of Is Formula Good for My Baby?, a print and online resource to help parents better understand the realities surrounding HIV and infant feeding in Canada, with a combination of scientific evidence and advice from HIV-positive mothers.
The possibilities… the complexities
I will be honest, I never thought I would see the day when real discussions would be taking place about the possibility of counselling families on the infant feeding options available to them, and then supporting them in their choice. I recently heard this described as “shared decision-making,” in which the scientific evidence we have gathered and a person’s preferences are combined equally to facilitate an informed decision. That is a possibility worth considering; a point worth pausing on for a moment.
And that leads me to the next layer in this complex discussion, a layer most of us shy away from even talking about because it is just too complicated, and that is when we talk about rights. This discussion involves the rights of parents, rights of families, and rights of their children. I am not an expert on rights, but I would welcome the chance to evolve this discussion even farther by delving into the notion of rights with someone who is.
Better support starting today
But wait…. For now we are just talking about possibilities. In the meantime, our messaging—in order to be supportive—needs to be consistent, and our practices must reflect needs. It’s not enough to make recommendations to formula feed for families; we need to make these recommendations feasible for all families. Several provinces provide infant formula for the first year given its excessive cost. But subsidized formula is not available across the country. This is one of those quiet issues that needs the volume turned way up. I ask you, if we make a recommendation, how can we not ensure that recommendation is ‘do-able’ for all families who are bound by it?
Let’s keep asking questions
Are we talking about infant feeding enough with families affected by HIV? Do we talk about it enough with fellow women’s health providers? The simplest answer is probably not, but that may not paint an accurate picture. If you’d asked me four years ago, I would have shouted out a resounding “NO.” However, after focusing more and more on this topic with community members and committed colleagues, I know we have made some progress. Some people are talking about it all the time, but I guess the volume on the issue is just still too quiet.
So let’s keep asking questions that we haven’t asked before, like when I was asked recently if a baby that was diagnosed with HIV at birth could be breastfed in Canada—I was so happy that critical questions are still emerging every day. Let’s all keep talking, shouting and making a real racket about this topic. And while we do it, lets make sure everyone’s voice and perspective is heard equally, respectfully and acceptingly. Any other conversation risks secrecy and silenced voices, and that—in my opinion—is the biggest risk of all.
Logan Kennedy is a clinical nurse specialist in sexual and reproductive health and HIV and works as the research associate at the Women and HIV Research Program in Toronto.
Interesting that the question of “rights” is raised here without further comment or discussion. It seems to be implied that a woman has a “right to breastfeed,” despite the potential of passing the virus on to the baby or causing longer-term health implications for the child from exposure to medications through the breastmilk. (The science remains so unclear as to the risks to the child at this point.) I’m not sure the “right to breastfeed despite risk to child” is necessarily a good rights analysis.
Under human rights law there is however a well-established right for a patient to have full information in order to make informed decisions. No one is ever required to blindly follow medical guidelines, but they should be given full information in order to decide whether it really is a better decision for them to disregard the guidelines and do something differently. Perhaps the rights focus at this point could be on providing mothers living with HIV with full information to make the best decisions for themselves and their children, and the support they need to do everything possible to support the health of their babies.
A couple of responses to Alison, who seems to assume that breast feeding is a high risk activity both in terms of transmission and medication exposure.
There’s a real lack of evidence based guidelines around mothers who are on cART and potential risk of vertical transmission.
I’d find it highly unlikely that no HIV positive mothers breastfeed, but it’s likely that it is pushed underground. This makes it harder to get evidence based guidelines.
We’ve had 20 years of cART and people living with perinatal HIV, I’m certain that the risk of a year (more or less) of exposure to antiretrovirals via breast milk is nothing to compare with a lifetime that young adults have successfully managed.