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

***

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.

About the Author:

Suzanne Barston is a blogger and author of BOTTLED UP. Fearless Formula Feeder is a blog – and community – dedicated to infant feeding choice, and committed to providing non-judgmental support for all new parents. It exists to protect women from misleading or misrepresented “facts”; essentialist ideals about what mothers should think, feel, or do; government and health authorities who form policy statements based on ambivalent research; and the insidious beast known as Internetus Trolliamus, Mommy Blog Varietal.

Suzanne Barston – who has written posts on Fearless Formula Feeder.


Email

Related Posts Plugin for WordPress, Blogger...

16 thoughts on “Guest Post: On HIV, stigma, and the pressure to breastfeed

  1. Dear Suzanne, thanks for this excellent post. I am PhD student in infant feeding in Australia, and your post has helped me to develop my own direction in this whole breast/formula debate.

  2. This post is not wholly accurate. Even in the developed world, based on a mother’s viral load and her adherence to ARV drugs, she MAY be able to BF. I would explore this option myself. It is not as cut & dry as ‘in the US and Canada you can’t BF with HIV but in Nairobi you can’ . . .

  3. Hi Ellen Mary,
    Indeed you’re right that it’s more complicated than I’ve stated here. I tried to simplify it for the sake of shortening all the information for a small blog post. But you’re right in that ARVs may reduce the viral load to such a low level that the woman may be able to safely breastfeed. In fact I agree that this is probably where we are headed in the future. There is research being done in this area, so hopefully we will have more concrete answers soon! However in Canada the best-practice is still not to breastfeed at all to avoid the risk completely. Breastfeeding still presents a small risk of transmission even with ARVs – especially during weaning. The majority of HIV transmissions occur during mixed feeding, because of the amount of inflammation that any other fluid besides breastmilk naturally creates in the body. Inflammation brings the CD4 cells, the immune cells which can become infected by HIV, to the surface of the mucus membranes (in this case the GI tract), making it easier to become infected with HIV.

    It is important that mothers who are HIV-positive understand the law in the country they live in. I really don’t know much about the US laws but I would consult a local AIDS Service Organization to find out. Unfortunately, in Canada, mothers who breastfeed could potentially be charged by putting their babies at risk of HIV infection, even while on ARVs and even if the risk is small. There are no specific laws around this precisely but in our current legal climate, people are, unfortunately, going to jail by “exposing” partners to levels of risk that are truly negligible. Even if HIV transmission does not take place, a mother who breastfeeds in Canada could potentially be charged by exposing her child to a risk of transmission. If you’re in Canada, HALCO and the Canadian HIV/AIDS Legal Network has more information.

    There are different guidelines and laws for different countries. Here in Ontario, where I live, women can be supplied with free formula from the Teresa Group. There are still lots of challenges presented by having to formula feed, as I’ve mentioned here, but right now that’s considered the safest option when it comes to the risk of HIV transmission. For women who do not have access to formula, such as in developing countries, exclusive breastfeeding is actually safer than mixed feeding, as I’ve mentioned, which is why the guidelines encourage exclusive breastfeeding there but not in Canada. The WHO guidelines can be found here, although I’ve been told that with recent research they are going to change very soon http://whqlibdoc.who.int/publications/2008/9789241596596_eng.pdf

    I hope that helps to explain what I meant a little bit more!

    • HIV positive mothers in countries such as Canada are caught in a dreadful trap. On the one hand they are prevented from breastfeeding with threats that their baby could be removed from their care, and they themselves face prosecution, if they do. On the other hand, they fear or face scrutiny from others – who are unaware of the mothers’ HIV status because of their reticence and fear about being open about it – regarding their ‘decision’ to formula feed rather than breastfeed.
      What’s missing is the right and ability of these mothers to make informed decisions about how they feed their babies based on their own circumstances and their own assessment of risks. Current knowledge about HIV is such that in some circumstances, and depending on how breastfeeding is managed, the risk of transmission via breastfeeding is very very low. In such circumstances, surely it is the family’s right to be supported to understand and weigh up the relative risks and advantages of breastfeeding compared with formula feeding; and make their own informed decisions. Some families may conclude that they are able to manage their HIV condition and their breastfeeding in such a way that the risk of transmitting HIV to their baby via breastfeeding is so small that it is outweighed by the various risks associated with formula feeding. It’s time the decisions were returned to families to make. The legal situation in Canada and similar countries needs to be relaxed in the interests of these families.
      Let’s hope the WHO guidelines do in fact change very soon. An update of the 2007 position is well overdue. WABA has fairly recently (Dec 2012) published “Understanding International Policy on HIV and Breastfeeding: a comprehensive resource”: http://www.waba.org.my/whatwedo/hcp/ihiv.htm#kit

  4. In the UK, the official stance has been changed to “If you do decide (against medical advice) to breastfeed with HIV, this will not be considered in itself grounds for referal to child protection services”; however, the risk of transmitting HIV is still something like 1 in 145 even in the most optimal circumstances (medication compliance, exclusive breastfeeding, alll possible steps taken to minimize risk), which is hard to justify in a developed countries where safe FFing is possible.

    The medical advice in the UK therefore continues to strongly promote FFing for HIV+ women, although if they do decide to breastfeed anyway they will be supported to help them reduce risk as much as possible, rather than criminalized. I think this is a wise stance.

    The only group of women with HIV who are actually encouraged to breastfeed are asylum seekers whose status in the UK is uncertain–they need to continue to breastfeed in case they get deported back to Zimbabwe or Somalia or whatever their country of origin is.

  5. Thanks so much for these informed and insightful comments!

    @Barabara I agree you. Families need to be empowered to make informed choices without the threat of criminalization. The law has become a barrier to public health and human rights in many contexts around HIV.

    @Breastfeeding without BS – it’s great to hear that the UK has changed their stance. This position makes so much more sense than criminalization. I wish it were the same in Canada. At least there is a good model to point to.

    • I agree–much wiser to support HIV positive BFing mothers. These mothers tend to live in communities where the pressure to BF is strong–if they do not get the support they need and fear that their kids wil be taken away from them if anyone finds out they are BFing, they will not know about ways to minimize HIV transmission risk (like avoiding early solids) and may also respond by pulling away from medical services in general–vaccination, well-baby visits and so on–which increases other risks too.

  6. Hi Megan, Interesting blog. I would be interested to know the numbers of HIV+ve mothers in Canada. In Australia rates are extremely low- less than 30 babies are exposed to HIV perinatally each year and nearly all are born to migrant women (less than one baby born to an Australian-born woman is exposed to HIV perinatally each year). The other part of the picture with infant feeding and migrant women is that the longer women are in Australia the shorter their durations of breastfeeding and the more likely they are to formula feed.

    • Hi Karleen,
      I’m not sure about how many mothers are living with HIV, but about 230 HIV+ women give birth each year in Canada. About one quarter of these women live in the Greater Toronto Area (not far from where I am situated). The rate of transmission from mother-to-child (among HIV positive mothers in Canada who are aware of their status) in recent years is about 1.7%.
      Thanks again for your question and sharing the situation in Australia!
      Megan

  7. Karleen – Thanks for your question! I don’t have the national stats off the top of my head. Let me find out and get back to you!
    Very interesting to hear about the Australia stats! Question – When you say “exposed” do you mean exposed to the virus via pregnancy/delivery (HIV positive mothers having HIV negative babies) or do you mean actually infected?

  8. Hi Megan,
    Yes, exposed to HIV in that their mothers were diagnosed as having HIV during before or during pregnancy or while breastfeeding after birth. I should have said that those stats are a bit old, early 2000s so it could be a bit different now. Although I don’t know for certain I think that most HIIV +ve mothers have come to Australia as refugees. The numbers of babies contracting HIV via their mothers is very small (just 5 between 2003 and 2006). I’ve not heard of any HIV+ve mother breastfeeding in Australia. I did hear of one who wanted to express and heat treat her milk but she was too frightened of child protection authorities. Have you seen the posters about infant feeding and HIV in the UK? There was one “Two HIV positive breastfeeding mothers in the UK- their story” Do you see the community pressure to breastfeed for HIV+ve women in the UK as coming mainly from cultural practices and beliefs around breastfeeding rather than from mainstream society? I ask because as I said, the trend is for greater enculturation in the new country to result in shorter durations of breastfeeding/more formula feeding rather than the other way around.

      • Sounds like the numbers of HIV positive mothers in Australia are much lower than in Canada. You’re right, it would be interesting to see those numbers today. Thanks for directing me to the poster – it’s really interesting.

        In terms of whether the pressure to breastfeed is localized within the cultural norms of certain communities, I think to a degree it is. I would say that cultural norms can exacerbate the pressure to breastfeed, although it is not exclusive to ethnic communities as I see the pressure to breastfeed can also be present in health care and social service institutions. In Ontario there tend to be higher rates of HIV among Black, African & Caribbean communities – not just immigrants but people who were born in Canada – and Aboriginal women. These communities may have cultural norms around breastfeeding that increases the pressure to breastfeed. Also, because these communities tend to be at greater risk there can also be associated stigma with formula feeding in that people may question whether someone is not breastfeeding because she might be HIV positive. However it’s difficult to divorce community norms from “mainstream” society since in Toronto there is no real mainstream – Toronto is the most multicultural society in the world, with half the population being born outside Canada, more than 200 self-identified ethnicities, almost half the population having a first language that is not English or French, etc. My interpretation though is that women who are HIV + face pressure to breastfeed within their communities, as well as within the organizations in which they access care & support.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>