Patients fear anti-retroviral drugs
Musi Shezi* was very sceptical about taking antiretroviral drugs, but now feels so well that he doesn’t understand those who would ‘rather take the garlic and the immune-boosters’.
Helen Green* says she was a ‘bed case’ who had to drop out of university until she started to take the ARVs.
After preparing to die, Mpumi Gasa* has subsequently completed her BSc and is looking for a job, while Constance Ndlovu* has a new job after repeated illness caused her to lose her previous one.
These are a handful of stories from some of the 1 100 patients on antiretroviral (ARV) treatment at McCord Hospital in Durban, which runs one of the country’s oldest HIV clinics.
After spending two weeks at the hospital’s Sinikithemba HIV/AIDS Clinic, it is clear that while many patients made dramatic recoveries, almost all were initially afraid to take the drugs.
According to hospital staff, many patients had heard bad stories about ARV treatment and were either incredibly sick or needed much encouragement from their family or employers, before they would take the drugs.
‘Most patients who come here are desperate for help. But they come with a lot of myths about ARVs,’ says Sizakhele Ndlovu, a counsellor who runs an education programme for those about to start ARVs.
‘They think negatively about the drugs but they need them. McCord has a history of helping people with HIV so we do manage to clear things up. But we have to do a lot of work to clear the funny thinking.’
Ndlovu believes that ‘the Health Minister’s approach to ARVs has impacted so badly on what people think about ARVs’.
Health Minister Manto Tshabalala-Msimang has repeatedly warned of the toxicity of ARVs and described nutritional programmes as an alternative to the drugs.
Hospital social worker Maud Mthembu agrees that ‘people are so sceptical about the drugs’.
‘But,’ adds Mthembu, ‘this is slowly starting to change now because they see the evidence that people who take ARVs are living and those who don’t are dying.’
Dr Chantelle Young, who treats pregnant HIV positive women, says about a third of her patients’ partners are against them taking treatment.
‘Men are often worried about their partners going on to ARV treatment. It’s most common with those men who work in government, often in high-ranking positions. In some cases they will refuse to allow their partners to begin treatment,’ says Young.
For Shezi, the support and encouragement of his employer pulled him through. ‘I was afraid to take the pills but they kept encouraging me.’
Eighteen months later, Sithole’s CD4 (measure of immunity) has risen from 37 to 194. (A healthy adult’s CD4 count is over 500).
Although he is still weak, he has a very positive outlook: ‘I am happy, my body is good. I am going forward. It’s amazing really because everything is just fine.’
Green, who lives in a small coastal town, found out she was HIV positive in 2000. When her health deteriorated sharply in 2003, her mother brought her to Durban to seek help
‘We came to find a solution. But we didn’t know if there was anything we could really do,’ says the 27-year-old with a broad, engaging smile.
She collapsed on the pavement from exhaustion as they traipsed around the city. Eventually they were told about Sinikithemba and Green went on ARVs, but she battled with nausea, dizziness and insomnia for the first few months on the drugs.
‘I just kept puking. I said ‘Mummy I want to stop these things’ but she wouldn’t let me. She kept telling me to be strong. She pushed me through.’
Today, after two years on ARVs, Green is well and working as a teachers’ aid. She plans to resume her university studies next year.
Dr Janet Giddy, who has worked with adult HIV patients for the past two years, says she has seen ‘miraculous recoveries’.
‘I came from a large primary health clinic where there were many HIV patients. There were no ARVs and it was very depressing. The contrast between that situation and this is amazing,’ says Giddy.
‘I am probably working harder than I have ever done, but I am motivated because there is life where there was death. My patients, who would not be here without the drugs, are now getting pregnant, having HIV negative babies and carrying on with life.’
However, a small minority of patients have reacted badly to the drugs. The clinic has started to see cases of lactic acidosis in the last year. Lactic acidosis is caused when lactic acid is not eliminated from the body and instead builds up in the blood and cells, causing stomach pains, nausea, vomiting and muscle weakness.
Overweight women who have been on treatment for longer than six months seem particularly at risk.
‘We have become increasingly concerned with [the ARV drug] d4T in relation to lactic acidosis,’ says Giddy.
The clinic has also seen some cases of lipodystrophy, which causes both abnormal fat deposits, usually in the stomach and base of the neck, as well as wasting, usually of the face, arms and legs.
However, Giddy points out that only about 10 percent of patients develop side effects and almost everyone is able to continue treatment, though some require a change of drugs.
What the ARV treatment is unable to do, however, is to address the many social challenges patients experience.
‘ARVs improve the quality of life but don’t address the social circumstances of people,’ says social worker Mthembu. About 70% of the cases she deals with have ‘HIV as a component’, she says, usually combined with financial problems, substance abuse and abuse. ‘ Health-e News Service.
* Names were changed at patients’ request.
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Patients fear anti-retroviral drugs
by Health-e News, Health-e News
August 10, 2005