Stigma Borne With Hope: Mothers, Children Face Dual Challenges

The children of women who are HIV positive face extremely uncertain futures.

For these children, their mother could be the means by which they too contract HIV.

Mother-to-child transmission causes more than 90% of all HIV infections in children under fifteen.

Elizabeth Lule, the World Bank’s Adviser for Population and Reproductive Health, says pregnant women who are HIV positive have a very high probability of transmitting HIV to their children during pregnancy, delivery and breastfeeding.

Branded by Society

There’s a strong stigma surrounding mother to child transmission.

“It’s not just the transmission that’s a problem. The tragedy is that HIV women not only have the disease themselves, but they’re also passing it onto their children. And then on top of that, they face the stigma and the rejection from their families when it becomes known that they have HIV/AIDS’” she says.

Without access to treatment, care and support, HIV positive women die leaving behind millions of orphans.

“Even the phrase ‘mother to child’ itself can cause stigma, as all the responsibility of transmission is put on the mother and none on the father.”

Breastfeeding Dilemma

The issue of breastfeeding poses a major challenge for many women.

“The fact is, women are expected to breastfeed,” she says. “So, mothers, whether HIV positive or not, face a terrible dilemma.”

“If they do not breastfeed, they are assumed HIV-positive, but at the same time, if they do breastfeed, they are accused of killing the baby. Because of the fear of rejection and stigma many women just pretend or continue breastfeeding, as if all is well. It’s a painful dilemma.”

Much more needs to be done to increase access to and information on reproductive health, voluntary testing and counseling, breastfeeding choices, and antiretroviral treatment.

Fear of discrimination, or worse, discourages many mothers from using existing health resources.

“Stigma against HIV positive women can also increase domestic violence—situations where HIV/AIDS positive women are beaten up or thrown out of their homes, with their children,“ Lule adds.

Study Holds Out Hope

A recent study conducted in Rwanda and Uganda showed that HIV positive mothers may breastfeed without infecting their infants.

Normally, about 15% of infants born to HIV positive mothers become infected through breast milk. The only way to prevent this was to bottle feed—an unacceptable option for women living in parts of the world without access to clean water.

The Stopping Infection from Mother to Child via Breastfeeding in Africa study provided 358 HIV infected mothers with antiretroviral drugs at the 36th week of pregnancy until a week after birth. The babies were exclusively breastfed and received daily doses of an antiretroviral until one month after they were weaned, usually about five to six months of age.

When tested at six months, only three of the infants were infected, compared to the 50 that would likely have been infected had they not received the antiretroviral. 

It’s the first study showing antiretroviral therapy significantly increases the likelihood that mothers who are HIV positive are able to safely breastfeed.

Earlier research has shown that an inexpensive single dose of an antiretroviral can reduce HIV transmission from mother to child during pregnancy or delivery. This intervention is known as PMTCT—or preventing mother to child transmission.

Priority Given to Antiretroviral Access

The use of antiretroviral drugs has been effective in reducing mortality—in both developed and developing countries—by as much as 80 percent.

Yet despite a dramatic reduction in cost—a 98% fall in drug prices since 1996— treatment coverage in Africa remains negligible.

Of the roughly 26 million people living with HIV in Africa, an estimated 4 million have advanced to the stage where the drugs are necessary to forestall the onset of AIDS. Yet, only 100,000 have access to treatment.

Tapping Into Effective, Affordable, Equitable Care

In developing countries where HIV/AIDS prevalence is very high, less than 40% of women actually deliver in health facilities.

“The whole technical area of mother to child transmission of HIV/AIDS and the care of HIV positive women is still not very well understood by the medical profession, so there’s a lot more training that needs to be done.”

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An example of the attitudes that can exist is shown in the words of a retired senior doctor from a public hospital in India, who was discussing the impact HIV on health care providers.

“There is an almost hysterical kind of fear—at all levels starting from the humblest, the sweeper, the ward maid, up to the heads of departments, which makes them pathologically scared of having to deal with an HIV positive patient. Whenever they have an HIV patient, the responses are shameful,” the retired doctor says.

In support of the WHO’s 3x5 initiative, the World Bank has approved an International Development Association (IDA) grant of $60 million for a regional program aimed at expanding access to HIV/AIDS treatment in three African countries—Burkina Faso, Ghana and Mozambique.

The Regional HIV/AIDS Treatment Acceleration Project, TAP as it is known, is the first World Bank funded project to focus primarily on HIV/AIDS treatment in Africa.

Michael Azefor, a member of the Bank’s project team says it will test the feasibility of expanding ongoing HIV/AIDS treatment initiatives using a combination of public/private/non-government organization partnerships “to serve the most vulnerable groups while each country strengthens its health system.”

The TAP program is intended to accelerate treatment—with “treatment” to be defined in a broader manner—not just antiretrovirals. Additional services will focus on:

• Voluntary counseling and testing
• Treatment with antiretrovirals
• Treatment of opportunistic infections
• Prevention of mother to child transmission—also including treatment with antiretroviral.
• Support and care for people living with HIV/AIDS

Particular attention will be given to family based treatment, which will provide antiretroviral care and support for the mother, her partner and her children. It’s a strategic move to improve the women’s quality of life and decrease the number of orphans.

Overall, the program provides a means to refine national treatment policies, train health care providers, improve facilities and supply chains, refine monitoring and evaluation, and increase access to treatmentand support.