People living with HIV can experience long and healthy lives thanks to early detection and improvements in treatment therapies and community support. Global efforts to reduce the transmission of HIV, as well as destigmatizing the virus, have been imperative to improve global health and wellbeing. Founded in 1988, World AIDS Day is an international public health day of growing awareness to support people living with HIV and to highlight the important work being done to stop the transmission of this virus.
Semantics Matter
It's important to highlight the difference between HIV and AIDS as well as the potentially stigmatising language used in infectious disease research. Human Immunodeficiency Virus (HIV) is a virus that weakens the immune system. Acquired Immune Deficiency Syndrome (AIDS) is a life-threatening syndrome that people living with HIV can develop when their immune system is weakened. During pregnancy, birth and breastfeeding, HIV can be vertically transmitted from the parent to the child through bodily fluids. “Mother To Child transmission” was commonly used to describe this process, however, this can perpetuate a negative association of mothers as the blame for virus transmission. Vertical transmission is the preferred terminology to show how disease transference can occur without accusing mothers (1). Moreover, using language such as “someone living with HIV” instead of “an HIV-positive person” puts the individual first and does not define them solely by their HIV status. Differentiating between HIV and AIDS as well as using destigmatised language can improve inclusive HIV research and representation in the world.
Management of HIV
AIDS remains the number one cause of death for women of reproductive age (2). HIV testing is now part of routine prenatal testing in the UK to improve early detection and provide parents with prompt lifesaving care (3). Early discovery and rapid access to lifesaving antiretroviral therapy (ART) and community support are imperative in reducing the impacts of HIV on individual health. HIV can be transmitted through bodily fluids such as blood, semen and vaginal fluids, as well as through breast milk (4). Since the development of effective ART, it is possible for the virus to become Undetectable, and therefore Untransmittable (U=U). This means there is no risk of vertical transmission for those living with HIV as they have extremely low viral loads. Unfortunately, however, U=U is not completely the case for breast milk, where there is still a small risk.
Figure 1. Infographic from the British HIV Association on the Risk of vertical transmission (BHIVA, 2020)
Variation in transmission risk calls for situation-specific guidelines
The British HIV Association (BHIVA) changed their infant feeding guidelines in 2018 for parents living with HIV. The BHIVA said for the first time that mothers living with HIV who have a low or undetectable viral load can breastfeed their infants. Having a low viral load is correlated with a decreased risk of vertical transmission of HIV. This was a monumental change to the previous guidance, as mothers living with HIV had formerly been instructed to solely formula feed and had little support in their infant feeding decision-making. These strict no-breastfeeding guidelines put mothers living with HIV in difficult positions as formula feeding is not always feasible. These updated guidelines were therefore a step in the right direction for providing better context-dependent options for mothers with a low viral load who want to breastfeed their infants.
Whilst the advice has changed to recommend breastfeeding if mothers have an undetectable load, the revised guidelines also warn that there is still a small risk of HIV exposure (see Figure 1 above). This can be alarming to mothers who have been told they have the option to breastfeed as it means that there is still some risk of vertical transmission. The best strategy for breastfeeding mothers living with HIV on antiviral therapy is to keep track of potential exposure by attending additional maternal and infant health checkups (5). Deploying these risk management approaches still requires further understanding and research on risk factors affecting the vertical transmission of HIV as well as the best support strategies for parents. The new BHIVA guidelines have championed the sexual and reproductive rights of those living with HIV by integrating socio-economic and biological risks involved in managing vertical transmission of HIV to support health decision-making.
The UK is considered a resource-rich setting, where there is access to formula milk, a sustainable water supply, and free ART (Provided by the NHS). This provides more choices for parents to prevent vertical transmission of HIV through either formula feeding or breastfeeding while their viral load is undetectable. This is thanks to a collective effort of passionate HIV campaigners, healthcare workers and legislators to support and improve the lives of parents living with HIV in the UK. Nevertheless, there are still barriers to formula feeding in the UK. Not all parents living with HIV can afford formula milk, which despite being key in preventing the vertical transmission of HIV, is not readily available on the NHS (6). Some mothers can feel as if they missed out on bonding with their baby by not being able to breastfeed, and their experience can be challenged by pro-breastfeeding communities. Moreover, there are still hurdles to accessing HIV treatment and assistance in the UK based on the local services available as well as the perceived shame associated with attending sexual health clinics (7). In the UK, there are resources to support parents living with HIV and their infant feeding decision, however, local and global disparities still persist which can impact the ability to access and use these resources. This creates context-dependent solutions to the risks of vertical transmission of HIV.
Geography, health care facilities and treatments on offer influence the assessment of the optimal infant feeding option. In areas such as Sub Saharan Africa, where ARTs are not as accessible, there is a risk that parents living with HIV cannot maintain a low viral load and would then be recommended to formula feed. WHO recommends following the AFASS guidelines: “Acceptable, Feasible, Affordable, Sustainable and Safe” in determining if formula feeding is appropriate. In cases where viral load is detectable and formula feeding doesn't meet the AFASS guidelines, parents are then recommended to breastfeed. In this case, the risk of infant mortality from contaminated or insufficient formula milk is higher than the potential risk of vertical transmission of HIV. Therefore, in settings with reduced options to take ARTs and without access to safe formula milk, the best option is considered to breastfeed.
What’s the best practice?
Discussing options with the midwife, GP and interdisciplinary team is important to find the best option for parents and infants. This is a complicated issue with a range of factors that can impact infant feeding choices for parents living with HIV. If you are concerned, speak to your doctor or midwife for advice (8).
Figure 2. Infographic outlining The Safer Triangle from the British HIV Association (BHIVA, 2020)
NEW UK Policy Updates as of 2020
More recently, as of 2020, guidelines have been updated to outline three crucial factors which facilitate safe breastfeeding for mothers living with HIV with a low viral load. “The Safer Triangle” means the safest way to breastfeed is when the virus is undetectable, the infant's stomach is not irritated, and the parent's breasts are healthy (as can be seen in Figure 2 above). The importance of the infant's tummy being healthy is to prevent the virus from entering the susceptible stomach lining. Moreover, healthy breasts mean having no cracked nipples, which could increase the risk of vertical transmission. Taking these critical factors into account can help parents sustain breastfeeding safely and prevent vertical transmission.
Improved HIV Education and Research are critical for future infants.
Risk assessment and communication for infant feeding while living with HIV is a complicated issue that involves contextualising the biological risk with the geography and socio-economic context of the parent. Interestingly, current microbiome research on people living with HIV highlights a potential opportunity to assess the vulnerability of vertical transmission. This could lead to huge improvements in HIV prevention and care.
Preventing HIV transmission will require a global effort. There is still a lot to understand about the exact risks associated with HIV transmission through breast milk and why there is still a risk even with a low viral load. There also is more to be done to support parents living with HIV to receive the best care and make informed decisions. BoobyBiome strives for a greater understanding of the infant's gut and breast milk contents to promote parent and infant health. Championing the health of all parents and infants is at the core of our mission.
Want to find out more? Follow this LINK for a leaflet put together by the British HIV Association on breastfeeding while living with HIV.
HIV and Breastfeeding: Challenges and New Directions
By Eileen Hahn