Breastfeeding and mothers living with HIV - few regions offer reimbursement or free access to breast milk substitutes
In general, women in Sweden who give birth are recommended to breastfeed their babies, when this is possible for the mother and the baby. Women in Sweden who are living with HIV and giving birth are advised not to breastfeed their babies due to the potential risk of HIV transmission, but to give the baby formula instead. Effective treatments are likely to reduce the risk of mother-to-child transmission through breastfeeding, but despite this, all mothers living with HIV are still advised not to breastfeed their babies. In the rest of the world, women in low- and middle-income countries are advised to exclusively breastfeed their children. In other high-income countries, the recommendation is similar to the Swedish one, but several countries have initiated trials and studies on the risks of HIV transmission through breastfeeding when the mother is on well-controlled HIV treatment.
The Swedish advice is not regulated in detail in the Infectious Diseases Act, and therefore it has never been legally tested if a mother breastfeeds her child despite the advice. Several healthcare regions communicate their advice by stating that it is prohibited by the Infectious Diseases Act, but this is not entirely correct. Other guidelines such as the Reference Group for Anti-Viral Therapy (RAV) and infection control leaflets mention the advice against breastfeeding, but nothing about possible legal consequences if a mother does not want to refrain from breastfeeding her children.
Previous studies
Infant formula becomes the solution available to mothers living with HIV when breastfeeding is discouraged. In 2019, the Posithiva group conducted a survey of regional practices on reimbursement of breast milk substitutes for women living with HIV. With regard to the financial reimbursement or provision of infant formula, the survey found that this is offered in the regions of Stockholm, Uppsala and Gotland. In Stockholm and Gotland, the formula itself is distributed, while in Uppsala financial compensation is offered. Region Jönköping stated that they might develop a model similar to Stockholm's. Thus, at the time of the survey, 3 out of 21 regions offered financial compensation or provided infant formula to mothers with HIV/their children.
New study on HIV Sweden 2023
Due to the fact that HIV Sweden has received several questions from pregnant women about what actually applies to breastfeeding and reimbursement, we decided to renew the survey conducted by the Posithiva group in 2023. We chose to ask the regions three simple questions to see if there had been any changes since the last survey. The written questions were addressed to each region's patient committee, which then sought answers within its own organization, or forwarded to the responsible doctor. The questions asked were:
Does your region provide free access to formula or reimbursement of the cost of formula to mothers living with HIV?
If yes, how is this process organized, and for how long is compensation provided?
Does your Region have experience of mothers who have chosen to breastfeed their child despite the recommendation not to breastfeed?
Result
16 regions responded to the survey. Region Stockholm and Region Gotland did not respond, but there was no indication that they had stopped providing benefits to mothers living with HIV. From the respondents came the following results.
Region Uppsala: Provides reimbursement for breast milk substitutes on receipt. Also has experience with mothers with HIV who have chosen to breastfeed.
Region Sörmland: Provides compensation of SEK 6000 for the first year. Has experience of mothers with HIV who have chosen to breastfeed.
Region Västerbotten: Does not provide compensation. Currently investigating whether compensation should be paid.
Region Jönköping: No compensation for mothers at present, but is investigating whether to introduce this.
Region Gävleborg: No compensation but discussions are ongoing to review this:
Region Västmanland: No compensation
Region Norrbotten: No compensation
Region Halland: No compensation
Region Skåne: No compensation
Region Örebro: No compensation
Region Dalarna: No compensation
Region Kronoberg: No compensation
Region Östergötland: No compensation
Region Västra Götaland: No compensation (has experience with mothers living with HIV who have breastfed).
Kalmar Region: No compensation
Region Blekinge: No definitive answer
In this study, we can thus conclude that one region (Sörmland) has introduced reimbursement since 2019.
2 Regions (Sörmland and Uppsala) state in this survey that they provide reimbursement for breast milk substitutes.
3 Regions that currently do not provide reimbursement are investigating or discussing whether to introduce reimbursement.
10 Regions state that they do not provide any compensation
1 region has answered that they do not have information about the situation in the region (Blekinge).
Few regions (Sörmland and Västra Götaland) state that they have experience of mothers living with HIV who have chosen to breastfeed their children.
The availability of reimbursement or free access to breast milk substitutes is an important issue. In a comparative perspective, women living with HIV still face more challenges to parenthood than women not living with HIV, for example through limitations in access to IVF and not being able to breastfeed their child(ren). Given these thresholds, regions should take more responsibility for achieving greater gender equality. Women living with HIV should therefore be offered the same conditions and opportunities as all other women in society.