HIV, breastfeeding and formula milk

Posted on: 3rd April 2017

Over a year ago a donation of formula milk originally bound for HIV positive mothers in the Middle East made its way to Body & Soul. We were struck by the demand among members for the tubs. It quickly became clear to us that our members were really struggling to afford formula. This led us to conduct some formal research on the challenges facing new mothers who are HIV positive.

The full results of our study will be presented at the British HIV Association conference in Liverpool on Friday. Here Rachael Spinks, who worked on the research for Body & Soul, draws out some of the major themes that emerged.

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Having a baby can be one of the happiest periods of a woman’s life. But when something as simple as being able to feed your baby safely leads to a huge financial strain on you and your family, that special time can become fraught with difficulties. This is what mothers who are HIV positive often experience. The HIV virus is found in breastmilk and breastmilk is the leading cause of vertical transmission of the virus worldwide. The British HIV Association guidelines recommend that all HIV-positive mothers avoid breastfeeding and feed their babies using formula milk exclusively to prevent transmission of the virus.

The chances of a HIV-positive mother in this country giving birth to a positive baby are less than 1%, provided certain preventive steps are taken. These include (i) highly active antiretroviral therapy (HAART) for the mother to ensure her viral load is undetectable during pregnancy, (ii) an assisted birth, (iii) HAART for the baby for the first few weeks after birth, and (iv) replacement of breastfeeding with formula milk feeding. Right now, the NHS covers the first three of these measures but not the fourth. So what happens if the mother can’t afford costly formula milk and resorts to breastfeeding in her desperation?

Here at Body & Soul, we provide a frontline service supporting mothers and families living with HIV. We wanted to gain a deeper understanding of the experiences of women who are told by medical professionals that they should not breastfeed, but who generally aren’t provided with the means to formula feed. Our initial research revealed that access to formula milk across London is patchy at best – it’s ultimately a postcode lottery whether mothers will receive this kind of support. We could only find three schemes in London for the provision of formula milk. One hospital told us with regret that its funding for the scheme had been cut by half and it was frantically holding meetings to come up with some sort of contingency plan to save the scheme.

Bottle

We interviewed 42 of our members who had given birth in the last three years, and discovered that half of mothers felt they were left unsupported when trying to formula feed their baby. Almost two thirds felt the support they were given did not cover their weekly costs for formula milk. Out of the women interviewed, 25% received no provisions at all.

Two mothers revealed they had resorted to breastfeeding as they did not have enough money to buy formula milk. One mother told us that as she had no friends or family to turn to for money, at times she found herself begging on the street to be able to afford formula milk rather than resort to breastfeeding:

“My benefits were cut at the time,” she said. “I found it really difficult to afford formula milk. I would rather walk the streets asking for change than resort to breastfeeding, which I did have to do sometimes. I went to my hospital crying because I was really struggling to afford formula milk.”

One 900g tub of formula milk costs between £10-£15 and a baby usually needs between one and two tubs a week. As HIV disproportionately affects low income families, and some of our members are surviving on as little as £30 a week, it’s easy to see how feeding a baby can put a huge financial strain on an already extremely tight budget. Even if the mother is entitled to benefits (namely Healthy Start vouchers), these amount to a meagre £6.20 a week for children under one and £3.10 for children aged one to three years – not nearly enough to cover the cost of one tub of formula.

All too often positive mothers are left with no other choice than to go hungry themselves in order to afford formula milk. This inevitably puts the mother’s own health at risk with lack of nutrition. More than half of the women questioned admitted there were times when they or a family member went hungry so as to buy formula milk.

The National Aids Trust (NAT) has been working on a range of policy proposals around the provision of formula milk, and our research has fed into their final briefing. Body & Soul fully endorses the policy recommendations that emerge from the report, including the proposal that formula milk be made available at no cost to all mothers living with HIV, regardless of immigration status and eligibility to receive benefits. No mother should be put in a position where in order to feed her baby she is ultimately forced to put her own health or her baby’s health at risk.



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