Guest Post: On HIV, stigma, and the pressure to breastfeed

If people read one post on this blog, I hope to god it’s this one. I didn’t write it – it was submitted by Megan DePutter, who works as a Community Development Coordinator at a Canadian AIDS Service Organization – and therefore it tackles so much more than the usual mommy-war crap I tend to drone on about. 

Please read this, and talk about it, and share it as much as you can. As Megan says, as we advocate and empower women to breastfeed, we cannot simultaneously allow women who are already marginalized feel more shamed and judged. This doesn’t hold true only for women living with HIV, but those dealing with a whole slew of medical and emotional conditions that might make breastfeeding difficult or contraindicated. Sort of puts a new spin on the saying “the perfect is the enemy of the good”, doesn’t it?

– The FFF

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On HIV, Stigma, and the Pressure to Breastfeed

By Megan DePutter

I work in a small-ish community (about 130,000 people) in a town about an hour outside of Toronto, in Ontario, Canada.  Locally, provincially and nation-wide, “baby-friendly initiatives” in health care and social service institutions aim to encourage and exclusive breastfeeding for 6 months. Bypassing for now the unfortunate name of the initiative (which seems to insinuate that any other approaches to feeding are “baby un-friendly”), I understand that these initiatives are evidence-based and well-intended. The problem is that, for the women I aim to support, these initiatives can create further isolation and shame to people who are already marginalized. The women I am referring to are women living with HIV.

See, while the complexity of the HIV virus is still stumping scientists who are working towards the distant prospect of a vaccine or cure, HIV has become primarily a social and a political problem, rather than a biological one.  Canada is one of the best places in the world to be living with HIV – although it’s far from perfect. But here in Canada we have readily available treatment – treatment that is more effective and easier to manage than ever before.  HIV can still pose health risks even with treatment, and the side effects can be unpleasant to say the least, but someone who is diagnosed today with HIV, takes their medication regularly, doesn’t smoke and takes care of their health can expect  a near normal lifespan.   This means if someone living with HIV today has access to treatment, health care and other necessities of good health, such as good food and stable housing (and these are big ifs for a lot of people), they can enjoy a full and productive life. They can work, they can love, they can even have children.  That’s right – they can have children! HIV positive women can – and do – give birth to HIV negative babies. In Canada, with proper treatment, the risk of giving birth to an HIV positive baby is reduced to less than 1%! This is great news for women who are HIV positive and want to have a family. However, because HIV can be transmitted through breastmilk, it is important that they do not breastfeed.

Let me back up for a minute. HIV – which stands for Human Immunodeficiency Virus – is the virus that attacks the immune system and, left untreated, causes AIDS (Acquired Immune Deficiency Syndrome). The distinction between HIV and AIDS is important because today, with proper treatment, the virus can be successfully suppressed.  Without treatment, the immune system breaks down, leaving the individual vulnerable to life-threatening opportunistic infections, at which point an individual is said to have acquired AIDS, and without medical intervention, will likely die.  With treatment though, someone can live with HIV for decades and never develop AIDS. So, if AIDS isn’t the biggest threat to people living with HIV, what is?

The answer is unequivocally stigma.  Contrary to a lot of myths, HIV is not spread through casual contact such as sharing sheets, linens, clothing, food, dishes or cutlery, bathwater, swimming pools, or toilet seats. HIV is not spread through touching, hugging, or kissing. HIV is not spread through coughing, sneezing, urine or feces, sweat, tears or saliva.   Moreover, the effective use of condoms are a successful way of preventing HIV transmission during sex, and viral load suppression through medication further reduces the risk of transmission to a near impossibility.  Methods of getting pregnant for couples who are sero-discordant (mixed HIV status) are plentiful. In other words, there is no reason to be afraid of living with, loving, or building a future with someone who has HIV.  Yet HIV positive people continue to face rejection upon disclosure of their HIV status – from potential partners, from family members, from friends, from their church and from entire communities.  People face discrimination in accessing housing and in the workplace and even from health care workers.  Whether out of fear, lack of knowledge, or judgments around how someone may have acquired HIV (which often stems from racism, homophobia, sexism and/or stigma around sex or drug use,) social exclusion can be an everyday part of the life of someone living with HIV. It is impossible for me to overstate the impact that stigma has on the health and wellbeing of people who are positive, even at a time when people with HIV are at their healthiest.

Let’s get back to breastfeeding.  For women living with HIV, motherhood can raise a gaggle of other complex social and emotional challenges. I’ve already mentioned that stigma impacts people living with HIV, but what about women specifically? People might assume that she’s a drug user, that she’s been a prostitute, that she’s been promiscuous. Given the judgments and attitudes that are often formulated around women’s sexuality, you can imagine what a woman living with HIV might face. For mothers, this stigma is intensified. And, since women with HIV must not breastfeed (although the best-practice around this differs depending on what country you live in; the guidelines are different for women living in countries without access to clean drinking water or formula) women living with HIV often face added judgment around their inability to breastfeed.

Since most women will not want to disclose their HIV status to others, they cannot divulge the very good reason they have for not breastfeeding when facing scrutiny.  The questions they are inevitably asked by friends, family, and health practitioners cause anxieties for women who are attempting to keep their HIV status a secret. In some cases, people can be very pushy about it; I have even heard stories where family members or friends may get so involved as to physically attempt to place the baby on the breast and have the baby feed without consent.  If a woman does disclose her status, she would, unfortunately, very likely face further stigma and judgments about her HIV status.  And if word got around (which it often does), she could be virtually expelled from her community. For women who are newcomers, do not speak English fluently, or are living in poverty, community engagement is often an imperative component of physical, mental and emotional wellbeing. When it comes to keeping HIV a secret, there is a lot at stake.

Furthermore, pregnancy and motherhood can bring up feelings of guilt and shame about the illness; in addition to facing external stigma, many women experience internalized stigma, and may feel guilty for not being able breastfeed. Feeling guilty about not being able to breastfeed is problematic enough for any mother, but for women who are already marginalized, further feelings of guilt and shame add to an already pretty big burden.  Some women may be tempted to breastfeed despite the risks. Others may withdraw from social circles. Others may be reluctant to access social services or health care where they are made to feel guilty about formula-feeding or pressured to discuss their personal reasons for formula-feeding.  For women living with a disease that needs to be managed through access to treatment, good health care, food, housing and community supports, social isolation can be dangerous.

HIV is not something a lot of people think about today, but it still exists – it’s just hidden.  Unfortunately a lot of health care workers in our community are unaware of HIV, the scientific developments in prevention and treatment, and the social implications of the disease.  HIV workers aim to help support women through these challenges, but we need our communities to be aware of these issues and help create supportive environments. Just because women living with HIV do speak openly about their illness does not mean the problem has gone away.

Mothers who are living with HIV need proper information and support around formula-feeding, and they need this information offered in a non-judgmental space. When programs are designed they need to take in to consideration the multitude of needs that may be spoken or unspoken.  I believe it is important that health-promotion programs, including those that support breastfeeding, be designed in an inclusive way. Women already face extensive social and political control – particularly around our bodies, sexuality, and children. It is important that social and health care programs foster independence, support diversity, and create a safe atmosphere that is free of judgment and respects the privacy and confidentiality of all women.  This is about respecting the critical health priorities of women who may already have extensive trauma issues and already experience marginalization.  I know there has been a lot of important and empowering work done towards providing better support and education on breastfeeding that is free from the outside influences of companies who sell formula, but we need to prevent the pendulum from swinging towards exclusivity.  I hope to educate health care and social service providers in my community to share information and create spaces that are built on models of inclusivity and support, rather than stigma and shame.

Please feel free to contact me at communitydevelopment (at) aidsguelph.org for more information or if you have tips or suggestions to share on how service providers can create a supportive environment for all women!  For more information about HIV and AIDS, you can also contact your local AIDS Service Organization. Other great resources are thebody.com and CATIE.ca.

A couples therapy session for Science and fed-up parents

You know how I’m always harping on and on about how we could be doing studies that actually help us protect infant health, rather than guilt-tripping mothers? My fairy godmother must’ve been listening, because today I stumbled upon an interesting article, courtesy of Mammals Suck (maybe she is a fairy godmother? Scientists can be fairy godmothers, can’t they?)

Featured on Nature.com, the article described two findings about the sugars in breastmilk. The first discovery was that one of the human milk oligosaccharides (HMOs) – the sugar molecules present in breastmilk –  can actually increase the chance of mother-to-child HIV transmission.

The molecule, called 3′-sialyllactose (3′-SL), is found in varying concentrations in the milk of different women. In a study in Zambia, HIV-negative newborns breastfed by HIV-positive mothers are twice as likely to catch the virus during their first month of life if the mother’s milk has an above-average level of 3′-SL1.

Doesn’t sound like the most positive news, but wait: only certain women’s milk contains significant enough levels of the sugar to place their babies in danger. Plus, other sugars have a positive effect:

The same study in Zambia found that five more of the 150-odd complex sugars in breast milk seem to have a protective effect. HIV-negative infants who consumed these sugars had a better chance of reaching their second birthday than did HIV-negative babies who drank breast milk lacking those sugars irrespective of their mothers’ HIV status. (Once a baby had caught HIV, however, breast-milk sugars had no influence on survival.)

 

The second part of the article described research into why some babies are not able to fight off necrotizing enterocolitis (NEC), despite being fed human milk. Breastmilk contains oligosaccharides that fight off this deadly infection – but as it turns out, not all women produce these sugars:

 (A team) reported an association between a dangerous gut disease in babies called necrotizing enterocolitis (NEC) and the inability of affected infants to secrete a suite of oligosaccharides in their mucus. These babies are considered particularly likely to benefit from drinking the sugars via breast milk, but about 10% of European women cannot make them in their milk…

 

Okay, so this is where it gets really interesting. Both of these examples suggest that depending on the composition of a particular woman’s milk, the health benefits of breastfeeding may not be identical across populations. A researcher quoted in the article hypothesized that “(t)he often confusing literature on breast feeding’s impact on disease will be largely explained by this underestimation (of the variation in human milk).” The article also explains how “(s)everal labs are trying to identify how variation in the prevalence of the large sugar molecules in breast milk… influences infant health. Once clear links are established, clinical trials to test HMOs as health-boosting additives in infant formula milk can be drawn up.”

Say WHAAAAAAAAT??

Yep, you read it correctly, FFFs. And I think we can all take a moment for a collective sigh of relief. Not all researchers are so entrenched in their  public policy advocacy efforts that they forget to see the forest for the trees! Not all lactation scientists are lactation consultants! Some are – dare I say it – scientists.

I fear that this is the type of research that gets pushed under the rug, because it requires critical thinking. There isn’t an easy soundbite that can appeal to the masses – in the first example, the answer is not to tell HIV+ women in developing countries to use formula until they are tested for the specific HMO, because formula feeding in resource-poor countries with contaminated water is a high-risk activity. But perhaps more research could lead to some sort of treatment which would help these women lower their levels of 3′-SL and increase the beneficial HMOs.

Similarly, what if a preemie’s mom wanted to get her breastmilk tested to see if it contained the necessary HMOs to protect her baby? And if she found that she was part of the 10% who didn’t produce these beneficial sugars, perhaps that could allow her to make an informed decision about using donor milk, while either pumping to keep up her own supply, or deciding to switch to formula once the baby was older.

Research like this allows for progress. It allows us to understand exactly what it is about breastmilk that makes it so beneficial, which might lead to better, more biologically “equivalent” options for women who can’t or choose not to breastfeed. But even taking it away from the infant feeding choice powderkeg for a minute, I think it’s an interesting thing to ponder why certain people are so uncomfortable with the suggestion that not all breastmilk is perfect milk. I mean, I understand it – who the hell is science to tell a woman that her milk isn’t “good enough”?

But people – this is exactly why we can’t be wishy-washy about whether breastfeeding is a personal act or a monitored, medicalized event. If we are going to pitch it to women based on statistics, telling parents that science has proven the medical necessity of nursing our young, then we must accept the risk that science could turn around and say “erm, you know what? I messed up. That’s only true for some women. Some gals just produce inferior milk.” While we might want to say screw you, science, and the horse you rode in on, we can’t. Because we used science in some very dirty ways when it suited our needs, and now it is hanging around like a rebound boyfriend who just doesn’t take a hint.

On the other hand, if we don’t allow medical authorities to lay down moral indictments based on the way we feed our babies, then we can easily kick science to the curb when it tries to tell us that our milk may not be all it’s cracked up to be.

Personally, I don’t think either scenario is great. As that Facebook group with the funny memes says, I f**king love science. Because I don’t think it’s true science that is messing things up for women. I think it is zealotry dressed up as science – people who are so committed to a cause that they are unable to come into research with the open, curious mind so integral to the scientific process.

So, I think as women, as mothers, it is safe for us to applaud research like this. We have to trust that knowledge can be power, as long as it is handed to us free of extrapolation. It’s not scary to hear that formula fed babies aren’t protected from NEC if donor milk is made available to preemie parents, or if we know that good old science is doing its best to create a supplement that could offer our tiniest babies protection regardless of the quality or quantity of a new (and often highly stressed, given the circumstances) mother’s pumping efforts. It’s not guilt-inducing to hear that breastfed babies have a higher IQ if we know exactly why this is – if it is an association, or something about the physical closeness during the act of nursing (which could easily be recreated by a bottle-feeding parent using a bit of imagination and less clothing) or something specific in the milk (in certain milk? Do some women increase their baby’s intelligence, and some women decrease it? Who the heck knows until we look into it?).

We can’t be scared of science, and we can’t abuse it. And scientists can’t be scared of staying neutral, and can’t abuse their power. If we can give each other this mutual respect, maybe we can turn this into a beautiful relationship. Even if it did start out as a rebound…

 

 

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