Nevirapine: It’€™s about saving babies’€™ lives

Pumeza Bikwe, 23, cuddles her chubby baby, Aneliza as she explains how lucky she feels.

When she fell pregnant, she didn’€™t even think about HIV/AIDS. But when she went for a medical check-up at an ante-natal clinic in Khayelitsha, she met up with health workers who encouraged her to go for an HIV test.

“When I went to the clinic for my first check-up, the nurse explained that if I went for a test and they found HIV, they could give me pills to help my baby not to get HIV,” explains Bikwe.

“I was then very interested in the test because I wanted my baby to be negative. My result was HIV positive and at first I was frustrated. But I have now accepted it and I live normally.”

She also accepted anti-retroviral treatment for herself and her baby and faced an agonising wait until her baby was nine months old and could be tested for HIV.

Nine months later, Bikwe’€™s Aneliza, has tested HIV negative and Bikwe is walking on air.

“This prevention of mother-to-child transmission programme (PMTCT) has been very successful for me,” she smiles. “I would really advise other mothers to go for the programme.”

Over the past few months, government has been challenged by a wide range of organisations to offer all HIV positive pregnant women the antiretroviral drug, Nevirapine, to prevent them from infecting their babies.

About 70 000 HIV positive babies are born in South Africa every year, and most live miserable, pain-filled lives and die young.

At present, the drug is being offered on a trial basis at 18 sites countrywide, only reaching about 8% of women who need it.

Cost is not an issue. Boehringer Ingelheim, which makes Nevirapine, has offered to supply the drug free of charge to the South African government for five years.

Without anti-retroviral drugs, babies born to HIV positive mothers stand a one in three chance of getting HIV. With Nevirapine, this risk is cut to one in six, according to studies conducted in South Africa and Uganda.

Mothers only need to take one tablet during labour, while their babies need half a spoonful of Nevirapine syrup within 72 hours of birth.

The Treatment Action Campaign, which took government to court in a bid to force it to make Nevirapine widely available, won its case and on 14 December last year, High Court Judge Chris Botha ordered the government to roll out its Nevirapine programme. Government is appealing against the decision.

Busisiwe Maqungo, 28, was one of the unlucky ones. She had her suspicions about being at risk of getting HIV. But she found out very painfully about her own status after being told that her baby was infected with the virus.

“I am not saying it was my ex-boyfriend, but I just didn’€™t trust him and he was always sick. I had my suspicions, but never really acted on them.”

In 1999 Maqungo gave birth to a baby girl.

“The baby was really ill and the doctor said we should do an HIV test as it was unusual for a baby to have pneumonia and diarrhoea at such a young age,” says Maqungo.

“I didn’€™t expect the results to be positive, so it was really a big shock when they told me. At that stage, it wasn’€™t even the fact that it meant I was HIV positive as well. I was only concerned about my baby and trying to keep her alive and healthy until they find a cure.”

Her daughter died when she was nine months old. It was later confirmed that the father of the child was also HIV positive.

“I think I was denying the fact that I was HIV positive. When I finally accepted I asked God why he did it to my child. Why not only me?

“After her death I was prepared to disclose my status. Since then my friends have supported me. I feel healthy and strong at the moment and I still hope that something will be found to cure me.”

Had she known that there was a drug available to help prevent her baby from getting HIV, Maqungo, like many other women, might have tested herself sooner and been able to seek out access to a PMTCT programme.

“I gave birth to an HIV positive baby who should have been saved. That was my experience, the sad one, and I will live with it until my last day,” said Maqungo in an affidavit in support of the Treatment Action Campaign’€™s case against government.

Government justifies its slowly-slowly approach by saying that not enough is known about the effects of the drug.

“This government identified the need to find out the impact of Nevirapine, and we can’€™t be a responsible government if we do not find out the effects of any drug on our people,” says Health Minister Dr Manto Tshabalala-Msimang. Government has repeatedly raised its concern that mothers and babies can develop resistance to Nevirapine.

But a report by the non-governmental organization, Health Systems Trust, says no significant adverse affects have been recognised in either mothers or babies taking single-dose Nevirapine as part of the PMTCT regimen.

The report, commissioned by the health department, gives an overview of the 18 PMTCT pilot sites.

The authors said that severe liver and skin complications had been noted in adult patients taking Nevirapine as part of the prolonged, combination treatment programme. But these complications have not been noted in mothers or babies taking Nevirapine as part of a single-dose PMTCT regimen.

For Dr Nono Simelela, head of HIV/AIDS in the health department, the cautious approach is important mainly because women can also transmit HIV to their babies during breastfeeding.

“Giving the drug is the easy part. The difficulty comes with the feeding. We need to follow the babies after a year to see whether those who get the Nevirapine at birth are still HIV negative,” says Dr Simelela.

In the 18 test sites, government has been offering formula milk to HIV positive mothers and encouraging those with access to clean running water to forego breastfeeding in favour of the formula.

In places where women don’€™t have access to clean running water, they have been advised to exclusively breastfeed ‘€“ “and exclusively means just that ‘€“ no water, no tea, just breastmilk,” says Dr Simelela.

“Many women are not comfortable to tell their partners that they are HIV positive, so they don’€™t take the formula,” adds Dr Simelela. “Or they might breastfeed when their hubby and family is around and use the formula when they are alone. Unfortunately, research shows that this mixed feeding is more dangerous for transmission of HIV to the baby.”

Professor Jerry Coovadia, paediatrician and Head of Research at the Nelson Mandela Medical School, believes government’€™s slow approach is wrong.

“Does Nevirapine work? A million times, yes, it works,” says Professor Coovadia. “We could do research until kingdom come. But what we already know is that it works, so we should implement it now.”

Coovadia also believes that government should not be providing formula milk ‘€“ the most expensive aspect of its PMTC programme ‘€“ but rather encouraging women to breastfeed exclusively.

“I believe government is being badly informed by poor science. It shouldn’€™t be providing the formula,” said Coovadia. “Formula food is a killer. It doesn’€™t provide babies with the protection against disease that breastmilk does. If it’€™s mixed with contaminated water, babies can die of diarrhoea or pneumonia.”

According to a study done by the University of Natal, the risk of HIV transmission from exclusive breastfeeding for six months and then rapid weaning was “less than 5%”, said Coovadia.

Meanwhile, Western Cape health official Dr Fareed Abdullah says his province has been involved in PMTC since 1999 and it is really working.

“In the past 10 years, we have had no success stories in the fight against HIV. I am very encouraged that, for the first time, we are now beating the disease in one small way,” says Abdullah.

“Our basic calculations have shown us that, for every R1 we spend in the MTCT programme, we save about R2,50 in hospital costs for treating an HIV positive baby,” he adds.

Dr Eric Goemaere of Medicins sans Frontieres (Doctors without Borders), which is supporting the Khayelitsha PMTCT programme, says aside from saving babies, the programme is breaking down the stigma associated with HIV/AIDS.

“Before we started the programme, no one in Khayelitsha would admit that they were HIV positive,” says Goemaere. “Suddenly, from the women [on the programme] and their partners, we can identify thousands of HIV positive people. The numbers are breaking the stigma as the people cannot remain hidden.”

The experts, the courts – and even former president Nelson Mandela – have weighed in against government in its Nevirapine programme. After all, it’s about saving babies’ lives – not politics.

TAC vs. Government

The Treatment Action Campaign took the Minister of Health and eight provincial health MECs to court last year. It did so to win doctors in public health facilities the right to prescribe Nevirapine to all pregnant women with HIV and get government to develop a “comprehensive national plan” to prevent mother-to-child HIV transmission (PMTCT).

According to TAC:

  • Nevirapine is a “safe, effective and affordable option for resource poor settings” in preventing mother-to-child HIV transmission.
  • government is acting unconstitutionally by giving some women Nevirapine and not others. This violates babies’€™ constitutional right to life; women and babies’€™ right to health care services and women’€™s right to make decisions about reproduction,
  • By preventing state doctors from prescribing Nevirapine, their right to deliver a high standard of care is violated.
  • Government’€™s approach discriminates against poor women who cannot afford to get Nevirapine prescribed by a private doctor.

On 14 December, Judge Chris Botha ruled in TAC’€™s favour and said there was no reason why government should not provide Nevirapine to all pregnant women with HIV. Government is appealing against this judgement.

Govt’€™s defence:

Government argues the courts should not decide on whether Nevirapine should be provided to all pregnant HIV positive women as it is not the role of the courts to make policy decisions.

It says it has to balance a number of complicated factors, including fiscal and operational issues, before providing Nevirapine to all HIV positive pregnant women. These include:

  • ensuring that mother have access to voluntary HIV counselling and testing.
  • monitoring and evaluation of the mother and child to ensure Nevirapine is effective.
  • Keeping a lookout for the development of resistance to Nevirapine “which may lead to other public health crises”.
  • Following up children who get Nevirapine at birth for two years to establish whether the programme is effective, as HIV can be transmitted by breastfeeding.

Government adds that simply allowing doctors in public hospitals the right to dispense Nevirapine is not a solution. Hospitals may lack counselling services and the supply of formula milk. In addition, if doctors could prescribe whatever drugs they wanted, this could have serious budgetary implications.

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