The women who greeted me in the Suva office of the newly formed Fiji Network of People Living with HIV were young, bright, and resilient in the face of an HIV diagnosis so early in their adult lives. I was there in October to attend a gathering of 15 positive people from the Pacific region.
Over the next two days, I discovered that most of these women were diagnosed as HIV positive during pregnancy, and each one felt that since then, she had gone to hell and back again. Many had faced rejection from family members and the community and several had lost their jobs.
“They should tell us what tests they are doing,” said one woman. “It is not good to force people to have this test,” said another.
Globally, testing all pregnant women for HIV is increasingly the norm. The purported aim is to prevent transmission of HIV from mothers to their unborn infants — many members of the medical profession regard saving a newborn infant from HIV infection as their moral duty. How sound is this newfound enthusiasm for wide scale testing?
Some academics argue that testing all pregnant women in a country with, for example, a five percent infection rate may only prevent 25 percent of transmissions of HIV from mother to child. In countries with lower infection rates (which includes all countries in the Asia-Pacific region), one would imagine that there is need for strong economic arguments to support widespread antenatal testing, particularly in resource-poor settings.
A recent study presented at the XV International AIDS Conference in Bangkok indicated that over 20 percent of women who receive a single dose of the antiretroviral nevirapine, the cheapest and easiest drug to prevent HIV transmission to unborn infants, are subsequently resistant to it and may be unable to use it at a later stage for their own viral suppression; yet nevirapine is one of the most commonly-used drugs in first-line drug therapy.
Testing policies are often problematic. Many hospitals that carry out testing at antenatal sites for surveillance purposes do not do it anonymously, nor do they inform women that they are being tested for HIV.
There are considerable ethical issues in testing pregnant women for an infection that carries considerable stigma. Women are informed of their HIV test result — either directly from a health care worker, via rumour and innuendo from community members, or sometimes as a result of blatant breaches of privacy via the media — during an extremely vulnerable period of their lives. They often receive little support to come to terms with the news.
The outcome of HIV testing during pregnancy can have a devastating impact, not only on the woman, but also on her whole family, including any uninfected children. The Asia Pacific Network of people living with HIV (APN+) recently reported results of a study of the levels of AIDS-related discrimination in Asia. They found that women who are diagnosed as HIV positive face significantly more discrimination in the community and in the family than men do. Many return home to face the blame of bringing HIV into the family. Women with HIV were significantly more likely than men were to be excluded from usual family activities such as sharing eating implements or sleeping in the same room as other family members.
Of the 348 women surveyed, 15 percent had undergone mandatory testing during pregnancy or because of the illness of a child and 12 percent were then coerced into an abortion or sterilisation. In some instances, children of HIV-positive parents have been banned from attending schools, and some children have been forcibly removed from their mothers because of her HIV status.
“We need an environment in which there is more to be gained from knowing one’s status than from hiding in denial”
Women who test positive during pregnancy are subsequently twice more likely than men to be subjected to ridicule, insult or harassment because of their HIV status, and almost three times more likely to be excluded from social functions. Paradoxically, the majority of women around the world are infected by unprotected sex with their long-term partner — in some parts of the world, young married women are now the most vulnerable to HIV infection, from their spouse with whom they have little or no power to negotiate safe sex. But when these women are diagnosed as being infected with HIV, they take on the burden of society’s inability to cope and deal with this deadly virus.
So should we stop testing pregnant women for HIV?
During the late 1990s, most pregnant women who attended antenatal clinics in major Thai hospitals were coerced into HIV testing. While some saw this as a sound ethical response to the knowledge that HIV prevention now could be prevented in newborn babies, others perceived it as a drive by researchers to increase trial numbers so that academics could get journal articles published and move more rapidly up the ‘AIDS expertise’ ladder. The voices of positive women, who argued that they also needed medication to be able to care for their children, were slow to be heard.
But over the past few years, Thailand has largely recognised the need not only for healthy children, but also healthy parents, and has introduced PMTC+ (prevention of mother-to-child transmission) programs, which aim to prevent transmission to infants and to keep both parents alive with HIV medication when it is needed. This is a great leap forward for Thai women.
Throughout the Asia-Pacific region we need an environment in which people want to find out their HIV status; where there is more to be gained from knowing one’s status than from hiding in denial. In the APN+ study, people who tested of their own volition experienced the least discrimination. People coerced into HIV testing faced significantly more discrimination than people who tested for other reasons. Instead of placing the blame on women, let us forge a real dialogue with men and develop ways of encouraging couple counselling. If women are encouraged to test during (or preferably before) pregnancy with their partner, they may no longer continue to bear the brunt of this epidemic alone.
*Dr Susan Paxton* is an advisor to the Asia-Pacific Network of People Living with HIV/AIDS (APN+)
