Advances in in vitro HIV/AIDS diagnostics, combined with the development of highly effective antiretroviral (ARV) drugs, have significantly reduced the transmission of HIV from mother to baby and greatly improved health outcomes for mothers living with HIV. Simple and inexpensive tests screen for HIV within minutes, and point of care CD4 testing enables doctors to closely monitor a patient’s immune system to prescribe an effective combination of ARVs to keep mothers healthy during and after their pregnancy and their babies HIV-free. As a result, new pediatric HIV infections have nearly halved in the last eight years and the number of deaths each year attributed to AIDS-related causes dropped 24% since the peak in 2005, to approximately 1.7 million in 2011.
Yet, with all of these diagnostic tests and medical interventions, why are nearly 900 children still being infected with HIV in sub-Saharan Africa every day? The reason is that medicine doesn’t equal medical care. Administering tests and prescribing drugs is simply not enough.
When I started caring for pregnant women living with HIV in Cape Town, South Africa, in 2000, I noticed that many women who were diagnosed with HIV were not taking advantage of the medical interventions that could prevent transmission of the virus to their babies. In far too many cases, they were getting their HIV diagnosis, leaving the hospital and never returning.
The reason, which unfortunately still holds true today, is that medical facilities in sub-Saharan Africa are seriously understaffed. Sub-Saharan Africa carries 25% of the global disease burden and yet has only 3% of the world’s health care professionals. Here’s how that looks on the ground — doctors or nurses have only several minutes to spend with a pregnant woman. For a woman testing HIV positive, in that time they have to inform her of her HIV diagnosis, which is understandably devastating, and then quickly tell her about the numerous tests and medicines she needs in order to stay healthy and prevent HIV transmission to her baby. Often, this brief interaction is further limited by gaps in language and shared experience, leaving the young pregnant mother terrified, confused, and with nowhere to turn.
When she returns home, she may not have anyone to talk to about her diagnosis or support her through her treatment. The stigma associated with HIV in many African communities prevents women from telling their partner and family out of fear they will be abandoned or abused.
At mothers2mothers (m2m), we fill this gap between medicine and medical care. m2m’s Mentor Mothers are mothers living with HIV who we employ and train to provide lifesaving information and support to help HIV-positive pregnant women and new mothers prevent the transmission of HIV to their babies and stay healthy to raise them. This makes for a very different picture on the ground — instead of being rushed through a medical appointment, a newly-diagnosed woman is taken into a room filled with other HIV-positive women. A Mentor Mother sits down with the woman and tells her that she is HIV-positive too, is living a healthy and productive life, and that she has children who are HIV-negative. The Mentor Mother takes as much time as is needed to educate the woman about all of the necessary tests and drugs, and then continues to give her information and support every step along the way, advocating on her behalf through pregnancy, labor, and early childhood.
This education and support has been shown to significantly increase adherence to testing and drug protocols. Women who visit an m2m site multiple times are more likely to pursue CD4 testing and take ARVs than women who visit a clinic without an m2m presence.
Since we opened the first m2m site in Cape Town in 2001, we have helped more than one million women and their babies in nine sub-Saharan countries. But with 900 children being infected with HIV daily, there is clearly much work to be done. We are now focusing our energies on integrating the Mentor Mother model into national health care systems throughout sub-Saharan Africa. In this way, we will ensure the long-term sustainability of our program, reach more HIV-positive women and their babies with Mentor Mother services, and come closer to realizing our goal of a world in which no baby, anywhere in the world, is infected with HIV.
Founder and Medical Director of mothers2mothers