Because of advances in HIV treatment and community models of wholistic care, people living with HIV can have healthy HIV-negative babies, and for those who want to breast or chestfeed, effective HIV treatment greatly reduces the risk of transmission (but does not eliminate it). For others, Ontario has an incredible option for free formula through the Teresa Group’s Infant Formula Program. These incredible advances rely not only on HIV medication and medication access, but also on thoughtful, welcoming communities of care and support.
Best practices and guidelines to support HIV+ people in having babies and making thoughtful decisions about infant feeding
There are key resources and guidelines about HIV treatment best practices to ensure HIV is not transmitted to a fetus or infant. In particular, the 2018 updated Canadian HIV Pregnancy Planning Guidelines say that if the person is on treatment before conceiving, and has an undetectable viral load (i.e., an undetectable viral load is determined by a measurement of how much HIV viral load people living with HIV have using a WHO approved test and when undetectable) throughout pregnancy, there is no chance the baby will contract HIV. Preferably, the person is successfully on treatment for at least three months before pregnancy, but six months is ideal, and has had their viral load measured in the two months before contraception to ensure it’s suppressed.
PrEP (pre-expose prophylaxis), a medication taken before HIV exposure to prevent HIV transmission for HIV-negative people, is only needed if the viral load isn’t suppressed. This aligns with U=U (undetectable = untransmittable) research and the Prevention Access Campaign and its associated Consensus Statement. However, if there are any barriers to access to treatment and care that could impact viral suppression, a healthcare provider may suggest taking PrEP.
In addition, updates to breast/chestfeeding practices were updated in late 2022. You can read all about them in this article: Canadian Pediatric & Perinatal HIV / AIDS Research Group consensus recommendations for infant feeding in the HIV context.
This resource provides recommendations that help support breast/chestfeeding for those considering it. This guidance includes frequent parental viral load monitoring to stay undetectable, regular follow-up of both parent and baby, and monitoring and treatment for baby with medications that treat HIV. It also encourages care providers to have thoughtful discussions with people exploring the possibility of breast/chestfeeding that include opportunities to ask questions, explore various options, understand the risks and benefits of each individual’s circumstances, and make autonomous informed and supported decisions. Beyond the decision to breast/chestfeed, Ontario also provides free infant formula through Teresa Group’s Infant Formula Program for those who chose to not breast/chestfeed.
What communities are saying about thoughtful and wholistic HIV care
Through community consultations conducted across Ontario in 2021-2022, the Women and HIV / AIDS Initiative team heard from many cis and Trans women, 2-Spirit and Non-Binary people living with HIV or who face systemic and structural risks related to HIV, that wholistic care is critical to their wellness. This includes pregnancy and parenting.
Participants defined wholistic care as physical, mental, emotional, spiritual and community-based elements of well-being. They also acknowledged the structural and systemic realities that impact people’s access to health, including HIV care.
These structural and systemic realities include institutional violence, the criminalization of HIV non-disclosure, gender-based and intimate partner violence, poverty and structural inequities, gender identity–based discrimination against Trans, 2-Spirit and Non-Binary people, housing insecurities, including homelessness, precarious housing and unsafe housing, anti-Black, Brown, Asian and Indigenous racism, and overall: stigma and discrimination.
Of course, these realities are often different for people who face a range of inequities including people who may use drugs or who have experienced incarceration, newcomers, or those who do sex work. These populations face a range of barriers to both wholistic models of care and connection as well as medication access. In particular, people spoke of facing barriers to medication due to cost and healthcare access, geographical location, racism, classism, a range of judgments and stereotypes about behaviours or social locations, or life dynamics that mean they de-prioritize their own care while caring for others around them.
Because of this, access to HIV care is important to think about through a wholistic lens that addresses stigma, discrimination, poverty, criminalization, class, racism, sexism and other social and structural determinants of health., With these factors in mind and a strong system of wholistic care, those living with HIV can have healthy, HIV-negative babies surrounded by communities of care and support.
It is all of our responsibility to collectively ensure strong communities of support, and a critical approach to addressing these systems that impact the lives of those living with HIV deeply. In particular, it’s important for healthcare providers and community support workers to have active conversations with people of childbearing years to make sure they are aware of the current science of pregnancy and HIV treatment, and to foster relationships of care and support so they can talk about their access to care, their reproductive wishes, and to ensure they have the autonomy to make thoughtful and informed decisions about having babies. For friends and community members, it’s important for us to actively foster communities of care and support for those who have faced years of judgment, stigma and discrimination.
How to learn more:
To find out more about this subject join WHAI and CATIE at an online panel discussion on March 28 from 1:00 – 3:00 p.m. called Supporting Women Living with HIV Through Health Pregnancies and Infant-Feeding with Dr. Sarah Khan, Brittany Cameron and Silvana Fuentes (from the Ontario Infant Formula Program at Teresa Group).
Want to learn even more? Check out these additional resources:
Women-Centred HIV Care: Information for Women
Supporting Mothers in Ways That Work
The risk of HIV transmission through breastfeeding: What we know (and don’t know)
Views from the front lines: Breastfeeding and HIV transmission
Infant Feeding in the Context of HIV (Podcast)
1. The term “chestfeed” is used to be inclusive of anyone who does not identify as having “breasts” but has the capacity to chestfeed their infant.
2. The term “wholistic” is spelt with a “w” to reflect the term “whole”, including mental, physical, emotional spiritual and community-based care, contributing to the “wholeness” of a person’s well-being.
3. World Health Organization. Social determinants of health [Internet]. Geneva: World Health Organization; n.d. Available from: https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1
4. Solar O, Irwin A. A conceptual framework for action on the social determinants of health. Social Determinants of Health Discussion Paper 2 (Policy and Practice). Geneva: World Health Organization; 2010. Available from: https://nccdh.ca/resources/en- try/a-conceptual-framework.