Bakita Kasadha, Dr Shema Tariq, Dr Farai Nyatsanza, Dr Nell Freeman-Romilly, Angelina Namiba and Tanvi Rai PhD
Author names and affiliations: Bakita Kasadha (University of Oxford), Dr Shema Tariq (UCL), Dr Farai Nyatsanza (Cambridgeshire Community Services NHS Trust), Dr Nell Freeman-Romilly (Oxford University Hospitals NHS Foundation Trust), Angelina Namiba (4M Network), Tanvi Rai (University of Oxford)
Namazzi sat patiently in the familiar reception hallway, avoiding eye contact with those sitting opposite her, anticipating how the conversation would go and wondering if she had the words to convince her doctor. Even after her diagnosis, her HIV doctor back home had advised her to breastfeed her babies. The words ‘breast is always best’ rang through her head. She held the words tightly on her lips; she had nursed each of her babies, knowing that the risk of passing on the virus was low. She had seen this first-hand; taking her medication had prevented her children from acquiring her stigmatised health condition, as she nursed both her children into healthy toddlerhood.
Now in the UK, the rules were different. Namazzi knew the doctors would encourage her to formula feed. She quietly played out a scene in her mind: there she was, a few months from now (her baby in her arms), at one of her auntie’s jolly dinner parties, surrounded by family and friends. She dared herself to imagine feeding her baby, this baby, not from her breast but from a bottle. Almost instantly, she felt her stomach lurch. She knew that doing that would be admitting to everyone she cared for that she and her husband had HIV. They would know. Why else would she not be feeding her baby at her breast? She looked up and around urgently, worried that others in the waiting room might have heard her thoughts, then tried to calm herself down. What was going to happen? What would she do?
Although signs of life in her belly were not yet visible, Namazzi had practised many times over how she would begin the conversation with her HIV doctor. She knew she wanted to feed this child just as she’d fed the others. But she wasn’t sure that they’d listen. She wasn’t sure they’d understand.Namazzi’s story is a fictional compilation based on conversations with the Nourish-UK team and stakeholders. Nourish-UK is a study on HIV and infant-feeding
The UK has one of the world’s lowest breastfeeding rates. Organisations such as UNICEF have led campaigns to encourage breastfeeding in the UK and highlight the importance of mobilising political and cultural will in supporting new mothers who to choose to breastfeed. However, the ‘breast is best’ campaigns, widely promoted in maternity clinics, birthing centres and baby cafes, overlook people who face complex decisions around infant-feeding and are actively encouraged to formula feed. Such is the case for new mothers living with HIV in the UK and other high-income settings.
Medical advances have transformed HIV into a manageable chronic condition. With an early diagnosis, and regular treatment, a person living with HIV can have a normal life expectancy. The medication is also effective at preventing onward transmission. When a person with HIV takes treatment, their viral load can fall so low that it is considered ‘undetectable’ (also known as virologically suppressed). The latest UK data show that 94% of those living with HIV know they have it; and of those people, 98% are on HIV treatment and 97% of them having an undetectable viral load. A person with an undetectable viral load cannot pass on HIV through sex, even without a condom.
Over 100,000 people live with HIV in the UK, and around one-in-three are women. Although having an undetectable viral load significantly reduces overall perinatal transmission (a baby acquiring HIV in the womb, during birth or through breastfeeding), the risk from breastfeeding is not zero. Despite this clear gap in knowledge, HIV and breastfeeding is an area that has been relatively overlooked in research. All current data on HIV transmission through breastmilk is based on research conducted in low-income settings. PROMISE, a 2018 randomised control trial investigating risk of transmission through breastmilk showed a 0.3% chance of HIV transmission after six months, and 0.6% chance after one-year of exclusive breastfeeding by mothers on HIV treatment.
The lack of research conducted in high-income settings, where the social and clinical context is different, has resulted in sharply divergent guidelines specific to high- and low-income settings. In poorer nations, the threat to babies from non-HIV related illness like diarrhoea and malnutrition (in the absence of breastfeeding and risk of unsafe drinking water through formula feeding) are considered more serious, and women are encouraged to breastfeed regardless of HIV-status. However, in high-income settings, such as the UK, where there is access to safe water, mothers are encouraged to formula feed, with the aim of removing all risk of HIV transmission.
In a departure from previous versions, the most recent HIV and infant feeding guidelines state that mothers who are keen to breastfeed should supported to do so, as long as they have an undetectable viral load and are willing to have additional blood tests. That said, we hear time and time again that these choices are not always framed by HIV doctors as real choices. They may not discuss all the options for infant feeding and the risk of HIV transmission is sometimes overstated and prioritised above everything else. Power dynamics between clinical staff and patients (as outlined below), and a limited and inconsistent understanding of the options available (by both parties, in different ways) can mean that new mothers find it difficult to advocate for themselves and make truly informed choices.
Infant-feeding options for new mothers living with HIV sit within a wider context of reproduction rights and advocacy for autonomy during pregnancy, delivery and post-partum. In the early days of the HIV epidemic, when it was understood that babies could be born with HIV, women living with HIV were largely advised not to become pregnant; some were encouraged to terminate much wanted pregnancies. As treatment became more effective, the risk of HIV transmission in pregnancy was shown to be significantly reduced. The landscape shifted; women with HIV were no longer deterred from becoming pregnant but were instead advised to have elective caesarean sections to minimise the risk of HIV transmission during birth. Again, as data on the low risk of transmission during vaginal birth in the context of HIV medication grew, the landscape shifted once more. Current international guidelines state that in the context of HIV, a woman with an undetectable viral load can choose to have a vaginal delivery. At each stage, women living with HIV themselves have strongly advocated for the evolution of these guidelines. For many HIV advocates and new mothers living with HIV, having the choice to breastfeed is the last hurdle to the autonomy and rights of new mothers’ fully being realised.
Women, HIV and the UK
There are approximately just over 800 pregnancies in women living with HIV in the UK each year. Despite Black people making up only 3% of the UK population, in 2019 over 60% of pregnant women living with HIV are of Black African ethnicity. Compared with men living with HIV, women are also more likely to have lower socio-economic status and poorer mental health. They may experience additional and intersecting disadvantages as a result of their racially-minoritised status, such as language barriers, competing cultural expectations, immigration issues and housing insecurity. These factors shape interactions within a healthcare setting with HIV and non-HIV specialists, such as midwives, creating power dynamics that might constrain women’s choices. They may feel scared to express their wishes, or fear that they will not be listened to, and there is evidence that generally ethnically-minoritised women are more likely to face discrimination from healthcare staff (compared to white women).
Considering infant-feeding options whilst living with HIV
Although breastfeeding rates are relatively low in the UK, in many African countries breastfeeding is the norm. Formula feeding may suggest something is out of the ordinary or ‘wrong’ and therefore be highly stigmatised. For others, like our fictional mother Namazzi, not breastfeeding can unintentionally serve as a proxy of one’s HIV status.
There are also a host of other considerations, beyond HIV transmission, when making decisions about infant-feeding. Some may worry about the expense of formula feeding, especially if they cannot access free provisions or services, due to an insecure immigration status. Some may also be concerned about the emotional and health implications of not breastfeeding such as the impact on bonding, risk of postpartum depression and nutritional and immunological properties of breastmilk.
Furthermore, it is important to recognise that even when an individual does confidently choose to breastfeed, there may be practical difficulties (including establishing supply, latching, and pain). Mixed feeding is not considered safe in the context of HIV, putting new mothers under even more pressure and highlighting the importance of accessible, knowledgeable and appropriate lactation support.
Understanding experiences through engaged and sensitive research
Globally, over 50% of people living with HIV are women. Generally, women are underrepresented in HIV research (and health research more broadly). To address the lack of data on HIV and infant feeding in high-income settings, we are conducting a qualitative study called Nourish-UK. The study is funded by the National Institute for Health Research’s Research for Patient Benefit (NIHR RfPB) programme. Our focus is on understanding how new mothers and birthing parents living with HIV decide to feed their newborn babies in the UK.
Specifically, our objectives are to:
- improve understanding of infant feeding decision-making among new parents living with HIV in the UK;
- identify barriers and facilitators to implementing parents’ chosen method of feeding;
- develop a free, online resource (on the prize-winning healthcare support website, Healthtalk) to support and provide information targeted at parents living with HIV and their healthcare providers.
Including parents living with HIV is imperative in making this research relevant and impactful. Mothers living with HIV are part of our Advisory and Patient and Public Involvement (PPI) panels. Through their involvement we have gained a deeper understanding of the importance of situating HIV and infant-feeding conversations within a historical and international context. They have told us how evolving feeding guidelines and data had shaped their own experiences and decisions. They have also shared their experiences of: inconsistent advice and support from healthcare providers; a lack of information on the full range of feeding options available (i.e. donor milk); and the importance of connecting with other mothers living with HIV, through peer support. They have all emphasised the importance of effective dissemination of both study findings and guidelines. For this research to be ethical and effect change, we must share our findings widely and accessibly.
How to help ensure that new mothers have an informed choice
Whilst this study is ongoing, our conversations as a team, and with our Advisory Panel and other stakeholders, allow us to make some early suggestions.
Open and non-judgemental conversations about infant-feeding options are key to reducing the number of babies who acquire HIV postpartum, and for supporting new mothers to have a happy and fulfilling experience of new parenthood. This requires involvement from a range of key partners.
We encourage HIV healthcare providers to:
- Be aware and be ready to discuss up-to-date HIV and infant-feeding guidelines;
- Initiate non-judgemental conversations around infant-feeding options early in pregnancy and make time to discuss and work through any concerns;
- Establish referral pathways so many parents can access peer support, breastfeeding support, donor milk and free formula and equipment (if needed)
We encourage non-HIV healthcare providers who are supporting new mothers living with HIV to:
- Be aware of the latest national HIV and infant feeding guidelines;
- Learn to recognise and challenge HIV stigma within a healthcare setting.
We encourage researchers to:
- Address the gender gap in HIV research;
- Help build evidence around HIV and breastfeeding in high-income settings;
- Work in in partnership with parents living with HIV, meaningfully including them at all stages of the research process.
Prioritising babies over mothers is not unusual within maternal and child health. However, maternal and child health does not need to dichotomised. The health and welfare of a baby is bound to that of the new parent and family; feeding decisions are made within, and have impact upon, families. Parents have an unassailable right to accurate and impartial information, and their right to make decisions that are best for their family and their baby needs to be respected.
Medical advances have dramatically changed the reality of living with HIV for the better. Through each of the four decades of the HIV epidemic, HIV advocates and many HIV specialists have championed a person-centred approach, and have fought for the rights of those living with HIV. This now needs to be extended to parents’ rights to make informed choices about feeding their babies, and to receive support to be able to enact those choices. Maybe then, we might dismantle what remains a fundamental barrier to autonomy amongst people living with HIV.