The world's policymakers have been cooking the statistical books on HIV services to mothers and babies. AIDS-Free World's co-directors Stephen Lewis and Paula Donovan wrote the preface to Failing Women, Failing Children: HIV, Vertical Transmission and Women's Health, the International Treatment Preparedness Campaign's report, "Missing the Target 7," based on research in six countries. The report was launched in May 2009 and received instant attention.

A year ago, researchers and activists set out to understand why the world is missing the target on a goal it set back in 2001: slash the rate of HIV infections from mothers to babies by half. We found that the global institutions in charge have been cooking the statistical books. Despite the success they've proclaimed - One-third of the way there, and closing in on the goal! - they're nowhere near the target. They haven't even been aiming for it.

On paper, the global programme called "Prevention of Mother-to-Child Transmission" is a model of sound design and human rights principles.  Its four prongs, guided by ten sound principles, cover the gamut from prevention to counseling to treatment.

In practice, the programme is a shameful example of double standards.

We remember well the elation in the mid-90s at our former offices in UNICEF headquarters, when results emerged from clinical trials in Uganda and Thailand. The risk of vertical transmission - passage of the virus from one generation to the next -- could be slashed, thanks to simple, relatively low-cost drug regimens for mothers and infants. An 11-country pilot project was spearheaded by UNICEF and assisted by the World Health Organization, and the good news/bad news rollercoaster ride began.

The first low point came with the pilot projects' title: "Prevention of Mother-to-Child Transmission", or PMTCT - a name that implies that mothers are the source of the virus, rather than the latest link in a long chain of transmission.

Finally in 2000, more good news: the pharmaceutical company Boehringer Ingelheim announced that for the next five years, any developing country could request free supplies of its anti-retroviral drug nevirapine - a single dose of which, administered during labour to an HIV-positive woman and immediately after birth to her baby, was then believed to cut by half the risk of transmission (now we know that it's actually two-fifths). Buoyed by the possibilities, the world's governments made a commitment in 2001 to reduce infant infections by 20% by 2005, and 50% by 2010.

Suddenly, silence. Over the next several years, in report after report issued by UNAIDS, the global Prevention of Mother-to-Child Transmission programme barely got an honourable mention. By 2003,  95% of the pregnant women in sub-Saharan Africa, the pandemic's epicenter, were not receiving any services at all to prevent vertical transmission. Like so many other programmes targeting women, everyone and no one at the UN seemed to be in charge. UNICEF went back and forth on infant feeding.  Wealthy nations were bringing their transmission rates down to negligible levels. But for poor women in developing countries, coverage stalled at 9% as rates of paediatric infection soared. Scale-up was slow, uptake was low, and no one seemed to know why. Experts offered reasons: women refuse testing; women don't return for test results; women given drugs don't take them as instructed. The problems, it seemed, were caused by the women.  

In the meantime, researchers were concluding that for most of the world's babies born to mothers with HIV, the best guarantee of HIV-free survival at a year and a half was a diet of nothing but breastmilk for the first six months. But most women didn't breastfeed exclusively. The UN's ardour for explaining breastfeeding to women diminished as the issue became more complex: babies needed to be fed all breastmilk, or all breastmilk replacements (formula); a mix of the two could kill them. Before a mother chose not to breastfeed, she'd first need to assess whether breastmilk substitutes met five criteria: acceptable, feasible, affordable, safe and sustainable. And then the most difficult risk of all to weigh: without the nutrients and immunities in mother's milk, the baby could die of other causes. Before long, in developing countries that encouraged women with HIV to avoid breastfeeding and provided formula, many babies did die.

About two years ago, we began to notice a different, more triumphant tone in reports from global agencies on vertical transmission. All heralded the fact that the percentages of pregnant women with HIV in programmes to prevent vertical transmission were finally climbing.

This year, cautiously optimistic, AIDS-Free World accepted an invitation to join TMAP in its research and publication of Missing the Target 7.  

What we've learned has been eye-opening and deeply disturbing. We should have seen it coming:  after all, what HIV-related programme that deals specifically with women or children has not lacked funds, urgency, coordination, and a place on the list of global and national priorities? This is precisely why the UN desperately needs a women's agency. What we didn't expect, though, was evidence of a conspiracy of misinformation.

"There has been substantial progress in scaling up access to services for the prevention of mother-to-child transmission," boast WHO, UNAIDS and UNICEF in a 2008 progress report called Toward Universal Access.

 "Progress" is expressed thus: in 2004, the rate was just 10%; in 2007, 33% of pregnant women living with HIV in developing countries received drugs to block transmission to their children.

The research conducted for Missing the Target 7 by teams in six countries corroborates the ugly truth: the much-touted coverage of 33% consists primarily of women who received nevirapine, in regimens that reduce the risk of HIV transmission by only about two-fifths, and can cause resistance to the drug in women who may need it at a later stage of their own HIV disease. Very few received the triple combination therapy that has helped make vertical transmission virtually a thing of the past in the global North.

What's more, by and large, the 33% represents women who didn't get contraceptives or other support to avoid future unintended pregnancies, counseling about infant feeding (or worse, got wrong information), and were encouraged not to breastfeed because, with free supplies of formula, they met one of the five ideal conditions: affordable.  And, in a direct assault on women's rights as human beings, rather than just mothers, that 33% includes women who gave birth and were sent home without anyone bothering to find out if they needed anti-retroviral drugs for their own health.

In other words, ‘substantial progress' in this four-pronged programme is determined by ticking off any woman who gains access to just one part of one prong.

Was this minimalist, inequitable programme effective at all? Did it move the world any closer to its goal of halving the number of HIV infections passed from mothers to children by 2010?  How can we tell you when only 8% of the babies born to pregnant women with HIV in 2007 were tested for HIV?

One fact, however, is unequivocally clear: the HIV-positive pregnant women receiving "PMTCT" services as they're currently defined amount to far, far fewer than 33%.

We reject the double-talk that touts failure as success, and the double standard that values wealthy women over poor. There is a crying need for an honest global evaluation to measure progress against each of the four prongs and every one of the guiding principles.  Instead of trumpeting a sham triumph, women would be better served if we took such an evaluation, saw which agency is responsible for which shortfall, and drafted a time-bound plan for them to shape up. They would be better served if the entire programme were taken apart and put back together in a realistic way, keeping in mind that platitudes do not keep women and babies alive and healthy.

We sincerely hope that the promised UN women's agency will ensure that prevention of vertical transmission is the last in a disgracefully long line of initiatives for women to fall through the gender-impervious cracks of the UN system.

Stephen Lewis and Paula Donovan
Co-Directors, AIDS-Free World

 


 

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