Yesterday, the International Treatment Preparedness Coalition released a report about prevention of vertical transmission, or prevention of transmission of the HIV virus from an HIV-positive mother to her child (available at www.itpcglobal.org).
Transmission of the HIV virus from mother to baby can occur during pregnancy, labor, delivery, or breastfeeding. However, there is a triple-dose combination medicine available in places such as the US and Europe that prevents close to 100% of all transmissions if the mother takes it correctly. Most women in the developed world have access to the medicine and to health care services, so vertical transmission has been virtually eliminated there- one of AIDS’ few success stories.
Yet in the developing world (such as Swaziland), the story is very different: only a third of women in the developing world are given any drug to prevent vertical transmission at all. The highly effective drug is only available to about 8% of these women; a different less expensive single-dose medicine is given that is only about 40% effective. Stephen Lewis (former UN Special Envoy for HIV/AIDS in Africa) and Paula Donovan, co-directors of AIDS-Free World (www.aids-freeworld.org) and writers of the preface to the report, call this “a shameful example of double standards.” And, these numbers are far from the ‘universal access’ goals that UNAIDS, the G8 countries, and other agencies were trying to achieve by 2010.
The report presented on-the-ground research from six countries about the barriers women face in accessing these health services, and criticized global and national programs for failing to ensure newborns and their mothers receive appropriate treatment and care. It illustrated that the emphasis is put on keeping babies alive and not following up with women, who must be put at the center on this issue.
In our experience, we agree, the response on this issue has been a failure, and the barriers that were identified in the countries in this report ring very true in this community. There are programs available that would work to prevent HIV in the child if the mother went to the clinic regularly and followed the instructions for treatment. It is not necessarily so simple for women to do that, and we agree it is critical to identify and respond to the sociological reasons why.
Many people say the prevention of vertical transmission program here has been a success, but their measure of success is if a pregnant HIV+ woman is given the prophylactic medicine when her child is born. This may mean the mother went without treatment for her own HIV, the baby and mother went without prenatal or follow-up care, no care was provided for the rest of the family, and no information about HIV prevention or reproductive health was provided to this woman. Also, this woman may have been handed the prophylactic medicine to take during delivery, but no one knows if she even took it or not (and in many cases she does not) because there is no follow-up with the mother. And women are delivering their babies on the homestead (meaning often in a mud hut, with no running water, electricity, supplies or health care workers), because they can’t afford the hospital transport fees. Sometimes, mothers and their babies suffer and die this way, and it is tragic, for many reasons but one because it is preventable.
If a woman manages to obtain the medicine, she may not take it because she may be trying to hide her HIV+ status from a mother-in-law or husband (often authorities on the homestead) who can decide to throw her out of their home if they find out. Also violence against women is pervasive and constant, and as the report shows, is a real barrier to HIV+ women accessing health services.
We have realized that a community-based comprehensive care approach, which truly takes in consideration the socio-cultural reality of the person you are serving, is necessary for any health program to work, especially prevention of vertical transmission as a part of women’s health. Women need special attention paid to them and their socio-cultural situation, which in Swaziland, can mean a deep gender inequality that does affect their access to health. Also follow-up is key here- with a pregnant HIV+ woman, a multi-drug resistant TB patient, or anyone that needs health care. You can’t tell people one time in a clinic- here, this is what you have to do for a year and a half- and expect compliance with that. You must have a relationship with people that is sustained over time.
We are doing what in social work we call ‘case management.’ We work with St. Philip’s Clinic here to identify mothers in need of prenatal care. Then we start providing home health care, going to their homesteads and working with their whole family. We do extensive education, and we closely follow the mother and child until the child is 18 months old, continually reinforcing the prevention and care steps the mother and family must take (prenatal care, basic HIV understanding and testing and counseling, arranging supervised delivery, follow-up care with the baby and mother including on infant feeding practices). We provide transport to the hospital and clinics, and supplemental nutrition for mothers and babies. You must sustain a relationship based on what people need. And if that relationship is broken in any way, you have to have the will and dedication to go out to the people and figure out what they need.
HIV+ pregnant women and their babies need this kind of personal attention, ongoing support and true “care”- health care that is more compassionate to their often silenced and neglected needs.
Thanks to FLAS (The Family Life Association of Swaziland) for the gifts of infant clothes which some of these photos show some of our mother and child patients receiving.
Blessings and love,
Srs. Diane and Barbara