Study shows that HIV-positive nursing mothers in London can struggle to obtain and afford formula milk

Many HIV-positive nursing mothers in London are struggling to meet the financial costs of formula feed, according to research presented to the recent conference of the British HIV Association (BHIVA). The study showed that a quarter of women did not receive any provision for formula feed and that almost three-quarters had a weekly spend of £10 or more on formula. More than half of women reported that they or their family went hungry in order to buy formula milk.

Citing the study, a briefing report from the National AIDS Trust (NAT) recommends formula milk should be provided to mothers living with HIV to cover the first year of an infant’s life.

Breastfeeding is a possible route of mother-to-child HIV transmission (MTCT). Although the rate of MTCT has been as low as 0.27% in the UK for several years, some transmissions are still attributed to breastfeeding. BHIVA guidelines recommend that HIV-positive nursing mothers, regardless of the use of antiretrovirals and viral load, should exclusively formula feed. However, because of difficulties accessing a reliable supply of formula in many resource-limited settings, World Health Organization guidance recommends exclusive breastfeeding.

The London-based charity Body & Soul provides support to HIV-positive mothers and their families. Investigators designed a study involving mothers who had given birth in the previous three years to examine experiences of accessing formula milk.

A total of 70 women who were members of Body & Soul were invited to take part in the study, with 42 agreeing to participate. The majority were Black Africans, 64% lived in outer London and 36% in inner London, just under half were aged 30-39 years and they were of mixed immigration status. Approximately half (48%) did not have any recourse to support from public funds.

The women received a range of advice about infant feeding. Over three-quarters (76%) were told not to breastfeed and to only use formula milk. However, 12% of participants were given options but strongly advised to formula feed, a further 10% had both breastfeeding and formula feeding presented as options (though the majority chose to formula feed) and one women was not given any advice from a health professional on infant feeding.

Many women were not given access to formula and its purchase was often a severe financial strain. A quarter of participants did not receive any provision of formula milk (though three women accessed this from food banks). Approximately a half did not receive any grants to help with costs of its purchase. Just under three-quarters (71%) spent over £10 a week on formula, with 7% reporting a weekly outlay of at least £20. Over half admitted that they or their family went hungry so they could afford formula. Fifty per cent reported feeling unsupported and two women told investigators they had resorted to breastfeeding because they did not have enough money to afford formula.

Qualitative answers summoned up the difficulties and dilemmas encountered by many of the women, one woman describing that she bought “less food to make sure we could afford milk…formula feeding is very expensive, I found it a struggle to afford. I felt sad not being able to breastfeed especially as culturally I am expected to.” Another women recounted how her benefits were cut, meaning she “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.”

The investigators recommend that free formula milk should be available to all HIV-positive nursing mothers; that vouchers for use in supermarkets are the preferred way of receiving formula; and that women should be given more advice about their feeding options.

The NAT policy briefing Access to formula milk for mothers living with HIV in the UK also makes several specific recommendations:

• All HIV-positive mothers in the UK should have access to free infant formula feed and feeding equipment as a key prevention right.

• BHIVA’s guidelines on infant feeding should be strengthened by recommending all mothers with HIV have access to free infant formula milk.

• Asylum support and Healthy Start payments should not be considered sufficient to meet the needs of mothers who need support to access formula milk.

• Funding needs to be protected for existing ad-hoc schemes that provide access to formula milk.

• Individuals responsible for implementation of the Baby Friendly initiative that emphasises exclusive breastfeeding, should give due considerations to UK guidelines about the use of exclusive formula feed by HIV-positive mothers.

• NHS England should consider funding free formula milk for HIV-positive mothers nationally through specialised commissioning for the prevention of MTCT.

• Local authorities and NGOs should fill the gap in provision while national funding is being considered.

• NHS Health Boards in Scotland and Wales should consider free formula for HIV-positive mothers as a prevention right.

• Should UK guidelines change to recommend breastfeeding in the context of viral suppression, the NHS should continue to provide free formula where it is needed, based on clinical judgement.

• Formula milk should be provided free to HIV-positive mothers to cover the first year of an infant’s life.

• Formula milk and feeding/sterilising equipment should be provided via HIV clinics.