Hard pills to swallow
This article first appeared in the October edition of Fair Lady.
It’s a warm day but Pretty Mkhize lies shivering under two blankets on the floor of her mother’s hut on the South Coast of KwaZulu-Natal. Her small hands look disproportionately big, almost as if they have been stuck onto her broomstick-thin wrists.
Pretty’s high, sweet voice is punctuated with gasps as the gaunt girl tries to explain her distress: ‘I have pains in my chest, in my stomach. I feel weak all over.’
A few weeks later, Pretty dies. She was only 17, but the body her family buries looked like that of a 10-year-old. A rapist had infected the girl with HIV when she was 15. Psychological trauma soon gave way to physical illness.
Pretty’s mother would often have to piggyback her child to the clinic some distance from her rural homestead but the family could not afford to buy anti-retroviral drugs to slow the growth of HIV in her body. So the virus spread, destroying her immune system and rendering her defenceless against the pneumonia that finally took her last breath.
Zinhle Thabethe’s laugh starts from her stomach. She is curvaceous, vivacious and her humour is infectious. I first meet her at iThemba Clinic in Mariannhill outside Durban where she works as a trainer, guiding a group of sickly and apprehensive women through a training programme designed to prepare them to take anti-retroviral drugs.
It is hard to believe that, 18 months ago, Zinhle was in the same state as Pretty. ‘I lost weight until I no longer looked like the same person. I was in bed for three months. I was too weak to walk and could only crawl to the bathroom. I was facing the end of my life,’ she says.
Battered by a range of diseases that prey on people with weak immune systems, Zinhle’s medical history reads like a textbook on HIV-related opportunistic infections. She’s had tuberculosis twice, meningitis, two kinds of pneumonia and oesophageal thrush.
But unlike Pretty, Zinhle’s doctor managed to get her on to a drug study that provided anti-retroviral therapy. Today, her life is regulated by the three-times daily routine of taking three different kinds of drugs. She has regained all the weight she had lost and her CD4 count has risen from 160 to 480. A normal CD4 count is between 500 and 1 200 and antiretroviral drugs are recommended once a person’s CD4 count reaches 200.
Now she struggles with guilt. ‘I used to think: why me? Why did I have to be infected with this HIV? Now I think: why do I get to live while others next to me are dying without these drugs?’
Up to one million South Africans are estimated to have Aids, the critical stage in HIV infection where their immune systems are so weak that, without anti-retroviral drugs, a common infection can kill them. Another four million are infected with HIV.
While the drugs cannot cure HIV, they can reduce its levels in the body. This gives a person’s immune system the chance to recover and fight back against illness.
Government is finally poised to introduce ARVs to the public sector, starting with pilot sites in state hospitals. This comes after four years of stonewalling which began soon after Thabo Mbeki became president in 1999 and started to question the safety of ARVs, implying that they did more harm than good.
ANC presidential spokesperson Smuts Ngonyama also chipped in, accusing Doctors Without Borders of using black people as ‘guinea pigs’ and conning them into ‘using dangerous and toxic drugs’ when it offered ARVs to people in Khayelitsha in 2000.
The Treatment Action Campaign (TAC), formed in 1998 by Zackie Achmat after a graveside promise to a friend who had died of Aids, was outraged by Mbeki’s stance. Achmat, whose own immune system is being destroyed by HIV, has become a global icon for refusing to take ARVs until they are available for all citizens. Last month (AUG 2003), Achmat announced that he would take the drugs after TAC’s national congress implored him to do so.
Trade unions, religious organisations, scientists, doctors and ‘ mostly significantly, former president Nelson Mandela ‘ joined TAC’s quest for treatment.
A major survey conducted for the Nelson Mandela Foundation last November showed that over 90 percent of South Africans of all races believed government should provide ARVs. Over 10 000 people joined a treatment march on Parliament when it opened in February this year.
In theory, Cabinet had already succumbed to pressure when it acknowledged last April that ARVs ‘could help improve the conditions of people with Aids if administered at certain stages in the progression of the condition.’ But it had added that the drugs were ‘at present too costly for universal access’ and ‘can cause harm if incorrectly used and if the health systems are inadequate.’
Challenged to put a price tag on ‘too costly’, government charged the Department of Health and Treasury with investigating the financial, infrastructural and human resources needed for an ARV programme.
On 8 August, after considering the report from the department and treasury, Cabinet asked the Department of Health to ‘develop a detailed operational plan on an antiretroviral treatment programme’ by the end of September.
Dr Nono Simelela, head of government’s HIV/AIDS Directorate, says that the most critical issues are ensuring that health professionals have the skills to manage patients on ARVs, that the infrastructure is adequate, and that communities understand how to take the drugs.
According to the Cabinet report, if government does not provide the drugs, it will still spend an estimated R6,7 billion by 2008 just to treat opportunistic infections.
If 100% of people who need ARVs were reached by 2008 ‘ about 1,2 million people by then — this would cost between R13,4-billion and R15,7-billion.
But the human savings are immense. These 1,2 million people will live to raise their children, earn their livings and contribute to their communities.
Drug prices are a big variable. The two drug regimens being considered (the one is not suitable for women at risk of pregnancy) would cost between R8 600 and R9 500 a year at current South African prices. But the best world price for the same regimens are between R2 000 and R5 400.
South Africa has one of the biggest populations of HIV positive people in the world. This means the government could become one of the biggest ARV buyers in the world and could negotiate cheaper deals. International donors are also prepared to help out.
In an exciting development, local pharmaceutical firms have started to make generic ARVs. In early August, Aspen Pharmacare announced that it was manufacturing stavudine, the first generic ARV in Africa.
Another generic manufacturer, Cipla Medpro, has also announced it will be making generics, including one that combines two drugs thus making it easier to take.
By manufacturing the drugs ourselves, South Africa can save lives and create jobs.
Aside from the money, however, there are huge challenges. Dr Nono Simelela, head of government’s HIV/Aids Directorate, says the key ones are ‘the skills of health professionals to manage patients on ARVs, the infrastructural requirements, and community understanding of what it means to take ARVs.’
For anti-retroviral drugs to work, they need to be taken at the same time every day 90 percent of the time. Without this extremely high level of adherence, the drugs will fail and patients will develop drug resistance.
Patients need a burning will to live and an absolute commitment to their treatment. We need to become a nation of dedicated pill-poppers for this treatment to work, and in order for this to happen HIV has to come out of the closet.
For six weeks, I attend Zinhle’s weekly training sessions with 10 women at iThemba Clinic. The clinic only has funding for 30 people to get ARVs so it screens potential patients in batches of 10 to find those most likely to take the drugs properly.
It’s a heartbreaking process. Everyone referred to the clinic from the outpatients’ department of the nearby St Mary’s Hospital is in need and those screened just happened to be in the right place at the right time.
As the weeks go by, self-esteem ‘ the will to live ‘ emerges as one of the hardest lessons for the women. Zinhle praises them for ‘choosing life’ by attending the course. She says that the women need to develop a fighting spirit ‘ much as she did ‘ if they are to survive the odds.
Dr Krista Dong, the Harvard-trained doctor running the clinic, supports her: ‘We’re talking about seriously sick people. Some have CD4 counts as low as 16. It can take years to build up their immune systems and they have to have the will to keep going.’
But for some, their self-worth rests solely on the functions they perform as mothers or housekeepers, roles that have been eroded by their various illnesses.
Others have also internalised the stigma attached to HIV as something they ‘deserve’. During discussion time, Nomhle says maybe her HIV is ‘God’s punishment’. Lizzy says it’s probably because she drank champagne at a party and was too drunk to notice that her boyfriend wasn’t using a condom.
Bongiwe is hospitalised for two weeks during the training. Each week she slips down to the clinic in her hospital gown and sits quietly, creasing and smoothing her sleeves. Although she knows that she won’t be accepted on to the programme if she doesn’t tell at least one family member, she says: ‘I cannot. I am too afraid’.
Finally, after intensive individual counselling, Bongiwe manages to disclose to her family and wins a place on to the programme. After eight weeks, she gains six kilograms and is learning how to laugh again. She also starts visiting her beloved baby, who she’d given to a care centre, as she was too sick to care for her.
All but one of the 10 women prove that they are reliable and the day they get their pills is like a prize giving. Nomhle wears a shiny black hat that makes her ears stick out. Sylvia gets to the clinic three hours’ early. As the time of their individual appointments approaches, the laughter starts to get a higher pitch.
Sceptics say government will not be able to provide ARVs as the country’s health system lacks the basic infrastructure to do so. If it starts offering the drugs in places that do have the infrastructure ‘ mainly urban hospitals in the Western Cape, Gauteng and KwaZulu-Natal ‘ this would deepen the divide between the rural poor and those in urban better developed provinces.
But Professor Robin Wood, who has been treating HIV patients since the 1980s, believes government has to start with what it’s got. ‘You can’t have the Rolls Royce everywhere,’ says Wood, who is associate professor of medicine at the University of Cape Town and currently oversees around 500 patients on ARVs.
Wood has worked on a number of different ARV projects and believes that a range of models is necessary to deliver ARVs, depending on existing infrastructure.
In Guguletu, the ARV component has simply been added to treatment being offered at provincial HIV clinics. This approach can work where there is good primary healthcare, says Wood.
In contrast, he says, the Khayelitsha ARV project offers complete medical care for patients ‘which could be a very good way to introduce ARVs in areas where no infrastructure exists’.
‘Lack of trained healthcare workers and poor morale are problems that government needs to address as they can undermine an ARV programme,’ says Wood. ‘We are getting better ARV adherence in Guguletu and Khayelitsha than in developed countries. If patients are not taking their medication properly, then we must look at what is wrong with the programme and not blame the patients.’
However, because of the dangers posed by drug-resistant strains of HIV spreading through the country if people don’t take their medication properly, many health workers believe that patients should be able to satisfy certain basic requirements before being given the drugs.
Dr Fareed Abdullah, who heads the Western Cape’s HIV/AIDS programme, feels strongly that doctors and nurses must be able to ‘deselect’ patients who lack the capacity to take their treatment, such as alcoholics.
‘We can’t be guided by laissez faire populism. If we don’t treat patients right first time, there will be widespread drug resistance,’ says Abdullah. ‘In the Western Cape, we have concentrated to patient preparedness. In Gugulethu, patients are prepared for a month.’
Health Department Director General Dr Ayanda Ntsaluba says his department does not have a problem with deselection, as long as the exclusion is constitutional.
‘According to legal advice, deselection on the basis of things under the control of the individual are justifiable but not for things they do not have control over,’ says Ntsaluba.
So a drug addict may be excluded, but someone too poor to afford food may not. This is one of the many thorny issues government will have to confront as it works towards fulfilling its constitutional mandate to ensure health for all.
* names of the 10 women trained were changed at their request.
This story was commissioned by Fair Lady magazine and may not be used without consultation.
Related information
ARV’s saved my life – Judge Edwin Cameron
E-mail Kerry Cullinan
Author
Free to Share
Related
