Infant feeding: supporting families living with HIV in the UK
Last week Matt Hancock announced the government commitment to reducing new HIV transmissions to zero by 2030. This is relevant to families living with HIV in the UK and after our meeting with NAT we felt it was time to get some information on current BHIVA guidelines on infant feeding for families living with HIV as well as a little about the experiences and needs of families living with HIV in the UK out to you all.
Pregnancy, childbirth and breastfeeding are seriously important when it comes to eliminating new HIV transmissions these are all times that present a small risk of ‘vertical transmission’ (VT), where HIV may pass from a parent to baby either in-utero, during birth or during breastfeeding. There are a number of interventions that have been put in place in the UK to prevent VT, these include HIV testing for all pregnant people, specialist teams being involved during an expectant parent’s pregnancy, cART (combination antiretroviral treatment), recommendations for a Caesarean birth, post-exposure prophylaxis (treatment with ART for baby after birth) and recommendations that women living with HIV exclusively formula feed their infants when they are born. These interventions are working, there are between 1000-1300 babies born to parents living with HIV every year but between 2006-2013 there were only 108 cases of VT, 8 of these cases are considered to have been from breastfeeding. This low rate of transmission is excellent news, but it still isn’t the 0% that we’re aiming for.
Why recommend that parents living with HIV exclusively formula feed their babies?
The WHO says that countries need to take stock of their own circumstances and decide on the advice according to what is most likely to give a baby the best possible chance of an HIV-free life. Breastmilk is a means of transmission and research shows that combi-feeding increases rates of transmission more than breastfeeding alone. In the UK we have access to safe water and preparation this is infant formula milk and as there is no risk that infant formula milks contain HIV, the BHIVA recommends that exclusive infant formula feeding is ‘the safest way‘ for a parent living with HIV to avoid VT. Another reason for this recommendation, is that we don’t have much information on how the medications used to suppress a person living with HIV’s viral load might pass through breastmilk and affect a breastfed baby or other long-term effects like development of resistance to certain medications. The data and research on these points is limited and not necessarily applicable to UK many studies are carried out in low-middle income countries, it is however better in this scenario to err on the side of caution.
What if parents do decide to breastfeed?
There are lots of reasons why a family living with HIV may choose to breastfeed, as we all know, infant feeding decisions can be emotionally and practically fraught and this is no different for families living with HIV! If a parent has an undetectable viral load, is happy and able to adhere to cART and other support from their health care providers, has healthy breasts (e.g., no infections such as mastitis or sore nipples) and their baby has a happy tummy and the risks/benefits of their infant feeding choices have been carefully discussed with them, then families will be supported by specialist health care providers to breastfeed their babies. It is so important that while formula feeding is recommended, we do not judge families for opting to breastfeed their babies, everybody has the right to choose and to be supported in that choice. The BHIVA guidelines allow for all options to be discussed with expectant families.
But U=U right?
While this is the case for sexual contact, we can’t yet be absolutely certain that this is the case for breastfeeding. Again, data is limited here, but one study found two examples of transmission even where the parent had an undetectable viral load. This could be for a number of reasons, some research has found that it’s difficult for parents to adhere to cART as well immediately after having their babies, some have suggested that even when HIV is undetectable in blood, it could still be present in breastmilk cells. This being said, women with an undetectable viral load and wish to breastfeeding should be supported to do so. Data on VT the case of supported breastfeeding in the UK are very encouraging.
What about the risks of infant formula milk?
Any risk/benefit analysis has to be carried out by each individual family after careful consideration and discussion with their specialist health care providers. Within a UK setting and for a healthy, full-term baby, we can be pretty sure that breastfeeding reduces the relative risk of some common childhood infections and illnesses (otitis media, upper respiratory tract infections and diarrhoea and vomiting). Safely prepared infant formula milk is a perfectly nutritious and healthy way to feed a baby and the vast majority of babies living in the UK will receive it as either all or part of their diets.
What barriers do families living with HIV face?
Parents living with HIV in the UK sometimes face a number of complex difficulties. They are more likely to be living below the poverty line, have an insecure immigration status, experience intimate partner violence, lack of social support or substance misuse. One enormous barrier that has been highlighted by the recent APPGIFI report, the National Aids Trust and within the BHIVA updated guidelines is as simple as access to infant formula milk.
Currently there is no national scheme to ensure that families living with HIV have access to sufficient formula milk throughout their babies’ infancy, many of the social barriers women face (e.g., insecure immigration status) mean that they fall between the cracks of any governmental help such as ‘Healthy Start Vouchers’ and so they struggle to afford to buy enough milk from the supermarket, the larger foodbanks are unable to distribute infant formula milks even to formula feeding families who are referred to them. This means that families have to make some tough choices such as skipping meals themselves, which can interfere with their own cART treatment, or breastfeeding against medical advice and without support, putting their babies at risk of VT.
What can I do to support families living with HIV?
It is important that we continue to work together to remove any shame or guilt associated with bottle feeding so that families feel confident and happy with their infant feeding decisions. We mustn’t make any assumptions as to why a family might be opting to use infant formula milk and unless invited, it’s best to keep any questions to ourselves. Families living with HIV should all have access to amazing teams of health care providers who will be giving them the very best, individualised support available. We can however educate ourselves so that we can slay the myths and stigma that surround HIV. This podcast is a really interesting introduction to the history of HIV and how we greeted the first people diagnosed with a horrifying lack of compassion, I’d like to make you aware that it’s difficult listening at times. You can learn more about the ways in which you can talk about HIV with understanding and kindness here. This blog and website gives a lot of good information on women living with HIV and the National AIDS Trust website can keep you up to date with campaigns, research and news on HIV and AIDS.
