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'Living proof' dispels fear of anti-retroviral therapy
Jo-Anne Smetherham. 09 June 2003. Cape Times. Republished courtesy of Independent Newspapers (Pty) Ltd.
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They have all pledged to take two pills twice daily or several capsules at night because the alternative would be to die. But many of the hundred people given anti-retrovirals at the Gugulethu day hospital were terrified at first. What if the drugs didn't work? What if the medicines killed them? After all, the president once said the drugs were poisonous.
What if their arms and legs shrank while their stomachs swelled up - a possible side effect of one class of the drug?
To dispel these fears - and simply to help keep others alive - a group of people taking anti-retrovirals at the Gugulethu Day Hospital have become mentors to 100 others sharing their predicament.
The programme, called Usapho Lwethu (Our Family), is believed to be the world's first in which people taking the HIV drugs ensure that others take them, too. It could be replicated in places across the country if the government sets up anti-retroviral programmes in the public sector, the doctors running the project say.
The nine "therapeutic counsellors", as the mentors call themselves, teach prospective patients about the drugs and their side effects before they enter the programme. And almost every day they trek across the Cape Flats townships for many hours, by taxi and on foot, checking that their patients are healthy and taking their pills.
Usapho Lwethu was launched four months ago. It provides anti-retrovirals to 100 people, but more are added almost daily.
The drugs had diminished the HI virus to undetectable levels in 90 percent of the patients, said Linda-Gail Bekker, one of the doctors, and no patients had died because of the drugs.
All of the counsellors were once desperately ill.
Now they provide living proof to others that the drugs work, they say. "It is not as if we're preaching about something we don't know," said counsellor Flora Thobela. "I know the fears that I had and I know others must be feeling the same. Some of them can't tell their families they have HIV. They become miserable if they don't talk to us."
Said Nontsikelelo Zindala, another counsellor: "The clients trust us. They depend on us."
Before taking the drugs, patients learn how the drugs work and about their side effects.
"Some are scary," said Thobela. "When I heard about them I wondered, 'What am I getting myself into?'
"After starting the drugs, I was waiting for the bad things to happen - but they didn't. I did it because, for my children's sake, I had to live. That was the most important thing - I had to live."
A non-governmental organisation called Sizophila (We Will Survive) trains and employs the counsellors.
They work for well over 40 hours a week and spend at least eight hours travelling, they say.
They try to incorporate several trips in one visit, but the programme has patients referred from nine clinics in the Nyanga health district. Sometimes it takes an hour to travel to one patient's home.
"You may be about to go home and you get a call from a client saying she wants to see you," said Zindala.
"Then you get home after 7pm. We often visit at weekends. We don't count the hours."
Some patients have had side-effects - one woman had nightmares that she was being buried in sand - but doctors running the project said these side-effects were minor and passed.
Usapho Lwethu is one of at least 18 such programmes across the country.
They include a Médecins Sans Frontieres anti-retroviral project in Khayelitsha, which has been running for three years.
All the patients told stories of hope. We visited some of Zindala's "clients", as the counsellors call the patients.
One lives in an immaculately kept house in Nyanga with his wife and three children. Tomato plants are growing on one side of a swept path and a tiny patch of mowed lawn is on the other. A home-made kennel for the family dog is near the gate.
When the man first took the drugs he became forgetful - a side effect of the drug efavirenz, said Zindala.
"I would come inside the house to get something, then walk out immediately without it," the man said. "Then I went and did exactly the same thing a second time. But, hey, now I'm feeling great."
He slapped his hands together. Then he went into his bedroom and hauled out a 25kg, home-made pair of concrete dumbbells.
"I am lifting this every day," he said. "No problem."
When we arrive the man's four-year-old daughter, wearing a bright red padded jacket, curled herself affectionately around my legs. Perhaps astonished by my skin colour, she then sat down next to me and traced a pattern along my arm, peering fearlessly up at my face.
"The whole family is also like that - they are so warm," said Zindala.
Another of Zindala's clients runs a ramshackle spaza shop behind his mother's house in Gugulethu. We sit at a table in a dark room, ringed by crates and boxes, to hear his story.
"Before, my friends had to help me run this shop," he said. "One would go in one direction to buy eggs for me, another would go another way to buy me bread. I was so weak that I could walk only to the corner."
Zindala said: "You could see he was in pain, all the time. Every 20 minutes he had to sit. You could see the effort all over his face."
The shop was a cross between a shebeen and a corner café. Enormous packets of beer were stacked on top of a fridge and bottles of washing powder were displayed on the counter.
These days, the man says, he can work all day. When he is feeling "fresh" he sells until 11pm.
People taking anti-retrovirals must take them on time, every day, to avoid the possibility of drug-resistant strains of HIV developing in their bodies. Almost all of their clients have watches, the counsellors say. Those who don't, listen to the radio to await a time signal or watch television and take the drugs when Generations, or another programme they recognise, begins, says one of the counsellors.
People are given the drugs only if they are likely to be disciplined about taking them. Also among the criteria are that they must have told at least one other person about their HIV status so this person can check they take the pills.
Prejudice against people with HIV remained rife, said Lulu Mtwisha, co-ordinator of the project.
"But here we have HIV-positive people who are employed, coming out of the castaway world, and the others can see it's working. They can see that, like the counsellors, they, too, can have dreams again." |
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