African mothers: Save us, too

AIDS activists say providing drugs to prevent HIV transmission to babies but not treating their mothers is unconscionable.


Megan Williams
July 13, 2000 11:00PM (UTC)

Any AIDS conference brings a lot of bad news. And as the epidemic spreads its blight across Africa, the news has never been worse. More than 23 million people on this continent have HIV/AIDS, with 16,000 being infected daily. Last year alone, 2.6 million Africans died of AIDS. In some of the worst-affected areas, more than a quarter of the adult population is infected.

That will leave a staggering number of orphans.

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It is no wonder, therefore, that news of recent breakthroughs in drugs that prevent mother-to-child HIV transmission (MTCT) has been greeted with jubilation. Drugs like Nevrirapine, zidovudine and AZT, which HIV-positive women may take for a brief period in the latter part of their pregnancy, reduce the chances of the infection passing from the mother to the child by up to 40 percent. At least half a dozen presentations at the 13th International AIDS Conference here have been devoted to the topic.

Scientists' excitement at the advances made in blocking mother-to-child transmission offers some desperately needed respite from all the dire forecasts and political wrangling that dominates so much of the conference arena. And, indeed, the fact that more children's lives will be saved is cause for celebration.

Yet in all the standing-room-only seminars with scientists presenting data on drugs preventing MTCT, one pressing concern of African AIDS activists and HIV-positive women was never raised: Just how ethical is it to offer treatment against mother-to-child transmission without offering treatment for the mothers?

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Its a poor country dilemma, and one that women from poor countries deeply resent. Many African AIDS activists say they have had enough of weighing whose life is more important -- the mother or the child -- and have taken the stance that unless drugs are offered to HIV-positive mothers after birth to prolong their life, it is unconscionable to try to save the child alone.

"Non-governmental organizations have to challenge the government and take the stance that if this treatment is coming without treatment for the mother, then it mustn't come," said Caroline Maposhere, the national research consultant with Positive Women: Voices and Choices Project, a non-governmental organization (NGO) in Harare, Zimbabwe.

Its a radical approach that once more underlines the vast gap at conferences like this between how poor, developing nations and rich ones perceive and deal with the AIDS problem. In wealthier nations, where expensive protease inhibitors and anti-retroviral combination drugs are available to HIV-positive women, few are forced into such corners.

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It was no surprise, therefore, that at a relatively underattended session on the ethics of offering drugs to save a child's life but not the mother's, that pent-up outrage was finally unleashed.

"It's the women who are bringing up the children, who are holding the families together," said one young African AIDS worker from the United Kingdom. "So you want to kill all these mothers and save the children. Well, you're looking forward to having 10-year-olds with no parents and being brought up by the state. But which state? The presidents will have died anyway of AIDS themselves."

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The audience laughed, but her point is hardly hyperbole.

There are currently 13.3 million AIDS orphans worldwide. These are children who, before the age of 15, have lost either their mother or father or both parents. Ninety-five percent of these orphans are African, and they make up about 10 percent of all children on the continent.

According to a report published jointly in 1999 by UNICEF and the UNAIDS Secretariat, AIDS orphans are at greater risk of malnutrition, illness, abuse and sexual exploitation, not to mention stigma and discrimination. Maposhere, of the Positive Women: Voices and Choices Project, says it's no mystery why.

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"We say we want a healthy child and we all know that the status of the mother, education or health status, heavily influences the outcome of the child," Maposhere said. "And now [with programs that do not offer AIDS drugs to mothers] you are totally sidelining, totally ignoring this mother! And you think you want a healthy child. You are joking!"

Africa is creating millions of orphans, she argues, so at least make them empowered orphans by helping their mothers live to see them get to school.

There is a consensus among NGOs that support should be given to helping families, rather than setting up an ever-expanding network of orphanages. Child advocates in South Africa in particular have been highly vocal about the importance of keeping children within the extended family to ensure they receive their land inheritance. To a limited extent, the families have been able to absorb the stress of increasing numbers of orphans.

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But with urbanization and migration for labor, often across borders, this widespread family support has been eroded. The number of orphans is growing while the number of potential caregivers shrinks. This has led to orphans themselves, some not even teenagers yet, heading up their families. It has also lead to hundreds of millions of street kids. Indeed, an afternoon spent just a stones throw from the AIDS conference in Durban gives you a sense of the devastation of families. In the space of one block, four of five small, half-naked children beg for food and money.

By singling out the potential child when making these drugs available, Maposhere says, governments will end up simply creating more orphans, and in the process treating mothers as disposable vessels through which innocent victims of the disease come into the world. Although she is the most adament about having NGOs take the all drugs or no drugs stance, she is not alone.

NGOs play a powerful and unique role in shaping how both African and Western countries perceive the spread of HIV/AIDS and ways in which to curb it. In the absence of meaningful opposition to challenge governments in many African nations, the responsibility to educate civil society on legal, economic and political empowerment issues has fallen to NGOs. Which issues they take on and how they choose to present them -- particularly in the case of AIDS -- often determines who lives and who dies.

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Until now, they have taken the lead in lobbying for these MTCT drugs to be made available in Africa. Many believe that while it would be ideal to treat the mother along with preventing HIV in the child, these costly drugs are pie-in-the-sky when African nations spend on average $4 a year per person on healthcare. Save whom you can with the resources you have, they say: Better someone than no one. Nonetheless, no African government has taken on a program to make the MTCT drugs universally available. Only through a small scattering of health initiatives throughout the continent are some women taking the transmission blockers.

Now, however, the cost of the MTCT drugs is dropping, and its affordability has driven the move the get the drugs into poor countries. Two doses of Nevrirapine costs $4. And even the much higher cost of $50 to administer the more commonly used AZT/3TC is somewhat within reach. Compare that to the $300 a month needed to pay for anti-retroviral drugs for HIV-positive mothers and it is not difficult to see how economics is determining who gets treated.

Sunti Solomon, an Indian doctor who runs a health clinic for HIV-positive women in New Delhi, said the cost of drugs like protease inhibitors for mothers makes poorer countries' access to them completely out of the question. Drugs, she points out, are just part of the cost. Testing and monitoring alone can mean expenditures of up to $200 every three months.

"We can't afford it," she said. "Definitely not. Not with the state of health we have."

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Each year in India 24 million babies are born; 2 percent of them belong to mothers with HIV. The HIV-transmission rate from mother to child without any drug intervention is between 30 and 40 percent, which means about 200,000 HIV-positive women are born each year in that country.

Ideally, I would have liked to prevent women from getting infected," Solomon said. "But the problem is we were too late. They're already infected. If we had empowered these women, if we had given them female control methods these positive pregnant women would not be positive. It was a failure on our part. Now why do we want to sacrifice the baby? And whose choice is it to save the baby? Yours, mine, an NGOs? Or is it the choice of the mother?"

And when mothers do get to choose, attest health workers from settings as diverse as San Francisco, India and South Africa, they choose for their babies to live.

Herman Reuter, the medical officer at the Khayelitsha Day Hospital in the biggest township in Cape Town, South Africa, runs the only government-funded mother-to-child transmission program in the country. The program was launched in January 1999 and treats HIV-positive pregnant women with AZT for one month. Since the program began, 806 pregnant women have been diagnosed with HIV and all have chosen to take AZT. By giving the women AZT, transmission rates were cut. And, just as key, said Reuter, women who otherwise would have received no care for their HIV, got some. These women have no hope at present of taking the expensive drug cocktails available in the wealthier countries, yet even by getting primary healthcare, their lives are prolonged.

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"There were all sorts of spinoff effects," explained Reuter. "Women became more aware of HIV, they began to have safe sex, they took better care of themselves, eating better and coming to us to treat their opportunistic infections such as chest infections or TB. But just as important, these women are now active in the community and putting pressure on the government to get anti-retroviral treatment for themselves as well."

Another offshoot of setting up the program is that other organizations and clinics have become aware of its success and are pushing to get the mother-to-children transmission treatment across the country. The Treatment Action Campaign, the NGO that Reuter is part of, has also been lobbying to have mothers treated. "But," he says, "it's a process and you start with the easiest and cheapest."

Yet not all those calling for drugs to prevent mother-to-child transmission are so confident it will lead to help for mothers. Dr. Hoosen Coodavia, the AIDS conference organizer and leading AIDS doctor in South Africa, is part of an international lobby of high-profile scientists and AIDS activists who are making their base demand that governments make drugs to prevent mother-to-child transmission available to everyone. The move is largely in response to South African President Thabo Mbeki's continued questioning of the connection between HIV/AIDS and his refusal to bring in drugs to treat the disease. Those lobbying for the drugs reason that by asking for less, they have a better chance of getting it. Nonetheless, Coodavia said there are serious risks that pushing for these drugs alone will sideline mothers, and not just temporarily.

"Yes, I worry that mothers are being ignored, but we in South Africa had to make a political choice," he said. "I mean, we have a president who won't even accept free drugs from the pharmaceuticals, so if we're not going to start by saying you must bring in these very expensive ones."

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But Caroline Maposhere says she's tired of hearing about Africa not being able to afford the drugs and resents the false "either/or" option put to women.

"Why are we discussing this issue already compromised? Saying 'oh yeah, oh yeah, we're from a very poor country, we can't afford this,'" she said. "Poor countries! We can afford wars elsewhere. In Zimbabwe, we are supporting a war in the Democratic Republic of Congo and you call us poor?"

Ruth Webb is an HIV-positive mother from the United Kingdom and one of the very lucky HIV-positive women in this world. Ten weeks ago, she gave birth to a healthy baby and has had access to treatment both for herself and the MTCT drugs. Since having her child, she said she has no doubts about where NGOs should place their priorities.

"If the NGOs don't ask for as much as they can get, they won't get anything," she said. "Ask for the world, ask for the moon, don't just ask for a tiny little bit. The babies can't live without their mothers."


Megan Williams

Megan Williams is a Canadian author and journalist who lives in Rome.

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