The last days of a young mother’s life have highlighted the power and danger of anti-retrovirals, writes Belinda Beresford
Sarah H died on Sunday, after suffering a rare side effect of the anti-retrovirals she was taking in an attempt to save her life, in the face of severe Aids. She had been a key public figure in the fight to get anti-retroviral drugs to pregnant women, and as a result, the news of her death is going to ricochet around the world.
The fact that her death is attributed by her doctors directly to the antiretroviral drugs she was taking, rather than to the ravages of HIV, is going to be seized upon by Aids dissidents as proof that such medications are too dangerous to use.
Sarah became famous as a witness in the Treatment Action Campaign’s (TAC) court battle with the government over the provision of nevirapine to curb maternal transmission of HIV. She wrote an affidavit for the TAC, detailing her futile efforts to get access to nevirapine for her child to try to save him from the virus that was killing her.
At almost every point after she discovered her HIV-positive status, Sarah was failed by the medical system, the social welfare system and the community she lived in.
Her siblings threw her out of their house when she told them she had Aids. She ended up in a women’s refuge, but because she had hepatitis B she was isolated in a bare room with rats for company at night. Fleeing to a shack in a township with her boyfriend, she had no financial or physical support, no sanitation, no clean running water. Nor could she find another state facility to go to, even when she and her child came out of hospital.
The state has repeatedly said that poverty is the greatest cause of ill health in South Africa. But Sarah was unable to access what there is of a state welfare safety net. Extremely ill, she couldn’t manage to get the disability grant she was entitled to.
Nor could she protect her children. She died without having been able to make provision for her teenage daughter and her eight-month-old son. They are reliant on the goodwill of the same relatives that told her to go away.
A strong woman, she had been open about her HIV status and had fiercely contested any form of stigma. But even in death she could not escape: her family told Sharon Ekambaram of the Aids Consortium that the undertaker would not release Sarah’s body unless they signed a paper saying she had not died as a result of Aids. If they signed then the funeral policy would pay out. If they would not sign, then they would have to pay.
Sarah felt let down by the state that refused to help her reduce the chances that she would infect her child with HIV during birth. Sick with full-blown Aids during her pregnancy, and aware of the implications, she had made her way to Chris Hani Baragwanath hospital to get the single dose of nevirapine she would need to take during labour. Ideally her baby would then have been given a dose of the same drug within three days of birth this regime protects up to 50% of children who would otherwise be infected with HIV.
But Sarah was so sick that she collapsed when seven months pregnant, was hospitalised in Sebokeng and then went into premature labour, too far from home to get the nevirapine pill she had carefully hidden there. Sebokeng would not or could not give her baby the dose of nevirapine that may still have protected him, because it was not one of the 18 nationwide pilot sites selected to give such treatment. The hospital offered to send her child to Bara by bus. Fearing the premature baby would die in transit, Sarah said no.
When Sarah died in a Johannesburg hospital she did not know whether or not her eight-month-old son is infected with HIV. She had taken him for his first test on the Monday. The test results came back after she was hospitalised. Even half sedated, she still smiled and tried to speak when shown a photograph of her son, cut from this newspaper where it had illustrated a story on the TAC. That piece of newsprint was the only personal possession that accompanied her down to the intensive care unit. She had been proud of her role in the TAC legal action, diligently attending each day in court. She had been planning to write a book about being a black, African woman with Aids.
Her doctors are upfront about the fact that she died as a result of a rare side effect from the drugs she was taking. An estimated 1% of patients on anti-retroviral therapy suffer very serious side effects from any particular drug combination if they are being treated properly. But doctors say that if she had not started the therapy six months ago, she probably would have died within a few weeks. Back in September, when she started taking a triple cocktail of anti-retrovirals, Sarah had a CD4 count a measure of the strength of her immune system of 74 compared to a minimum for a healthy person of 600. She had more than 750 000 copies of HIV in every millilitre of blood, and her body had been ravaged by hepatitis B as well as a number of other infections. Combination anti-retroviral therapy drove her CD4 count up to 121, knocked her viral load down to undetectable levels, and let her gain weight, strength and hope.
But drugs powerful enough to curb a virus replicating within human cells also tend to cause collateral damage to the human tissue. Sarah suffered an insidious and hard to detect side effect, lactic acidosis. The mitochondria in her cells, which convert sugar to energy, were damaged and unable to perform the normal aerobic chemical reaction. So her body switched to the anaerobic chemical pathway, which produces lactic acid as a by-product. Normally the body only does this in response to a temporary shortage of oxygen, for example during intensive exercise, when the lactic acid causes a “burning sensation” in muscles.
But in Sarah’s case this anaerobic reaction continued, steadily increasing the levels of lactic acid in her blood and changing the acidity of her body. Her body was poisoning itself. Normal levels of lactic acid in the blood are below 2,5. When they reach 10, patients have a very small chance of survival. By the time she was hospitalised, Sarah had lactic acid levels of 21.
At that point the state medical system, which had failed her during her pregnancy, almost let her down again. The intensive care unit, which could give her the kind of dialysis that was her only hope, was full. It had empty beds, but not enough staff to operate them. By Saturday night, still lying in a cold ward, she was not expected to make it through the night. But determined pushing by her doctors got Sarah into the intensive care unit where a dialysis machine fought to remove the lactic acid from her blood faster than her body could produce it.
For a while it looked as though the technology was winning. But one of her doctors confided that there were no records in medical literature of someone surviving the levels of lactic acid that Sarah had. And this impoverished symbol of the plight facing HIV-positive women in South Africa was not to be the first. After 24 hours her heart gave up, and attempts to resuscitate her failed.
Aids doctors fear that Sarah’s outspoken support for the use of nevirapine to curb maternal transmission of HIV, and her death as a result of long-term chronic anti-retroviral therapy, will be hailed by Aids dissidents as signs that such drugs are too poisonous to be given to pregnant women. And that this will further confuse in people’s minds the once-off treatment need to curb mother-to-child transmission of HIV and ongoing anti-retroviral therapy.
Sarah was being cared for by one of the few centres that really know how to give anti-retroviral therapy but her death highlights the dangers and problems inherent in such therapy.
If Sarah had survived, her drug options would have been severely limited. She would not have been able to resume taking the drugs she had originally received, and the alternatives were expensive. Doctors usually base their drug choices solely on cost, as many drug companies have yet to make significant price reductions on the anti-retrovirals.
Outside a relatively few centres, there is a general problem with lack of training for medical personnel in how and when to use anti-retroviral drugs. Such treatment is not routinely part of medical training, and it is only in the last year that the Wits Health Consortium has managed to get national support for a diploma course in anti-retroviral care.
Inappropriate or inexpert treatment with anti-retroviral drugs can kill patients even faster than the effects of the virus itself. There are persistant rumours among Aids doctors and activists that the death of former presidential spokesperson Parks Mankahlana was due at least partly to incorrect anti-retroviral treatment, with unmonitored use of AZT causing the “anaemia” that killed him. The African National Congress “Castro Hlongwane” document being distributed to branches and allegedly co-authored by ANC MP Peter Mokaba blames Mankahlana’s death on anti-retroviral drugs.
A senior doctor involved in HIV care says: “The drugs are safe if used correctly, in most cases. Sarah was very unlucky this condition is rare, and rarely fatal if the drugs are stopped.”
Giving anti-retroviral drugs to a patient means not only understanding the advantages and disadvantages of each individual drug, but also how they interact. The analogy is often with cancer treatment, where equally powerful and toxic drugs are used.
But far more people need and want anti-retroviral therapy than chemotherapy for cancer. And as knowledge spreads, demand rises, which in turn encourages informal trading. Already doctors say generic drugs from a neighbouring country are making it across the border into South Africa. At least two doctors have been confronted by patients who have bought these cheap versions, but need the state to pay for the tests and monitoring they require.