Sunday Times (Johannesburg) - November 25, 2001

"My life has no hope. Why doesn't the Lord just take me? I will feel better if I am dead."

Vusi Ngema speaks these words quietly. Then he bends over, clasps his head in his hands and stares for long minutes at the floor of his small, neat shack.

"My main worry is that I am a burden to my family," he continues, his eyes still downcast. "Most of the time I feel so stressed. I don't talk to anyone. I just want to be left alone. I have headaches and a stiff neck and stiff shoulders. It is as if I am carrying something very heavy."

His voice drops even lower: "One time I decided to just kill myself. I tried to commit suicide. I took a small bottle of Benzine and drank it. I nearly died. I had such stomach pains."

At 44, Vusi thought he would be able to support his family. Instead, all he sees before him is the accumulation of more and more pain as the HIV virus in his body eats away at his immune system and renders him dependent and helpless.

"When he sees my mother washing his clothes, he sometimes cries," says Vusi's older sister, Sandra. "He says he should be working for her, but now she, old as she is, has to work for him."

What makes matters worse is that Vusi watched his younger brother, Eric, dying of Aids two years ago. He saw how, for the last six months of his life, Eric could not get out of bed, feed or wash himself. He watched as his mother, Beatrice, washed her 35-year-old son's soiled bedclothes daily.

"It is very frightening because, although Eric never told me he was infected, I could see it was the same thing as me. Now he is dead and then I will die and what will happen to my mother and my family?"

The Ngemas live in a collection of shacks in Chesterville township below Durban's Pavilion shopping mall, a huge lemon-yellow edifice with an annual turnover of millions. Beneath this consumer paradise, the Ngemas - Vusi, Nicholas, 41, Maureen, 33, and Sandra, 46 - all live from their mother's pension.

"These things you see here, the TV and the radio, I brought them with me," says Sandra, who recently rejoined the family after leaving her abusive husband. "At least it is better for Vusi now because he can listen to the radio."

Vusi admits that the radio helps to ease the long and tedious days.

"There is nothing that I do. I get washed. My mother brings me my breakfast porridge in bed. Usually, I only get up at around 1pm. Then I sit and listen to the radio for a while. After I am tired of sitting, I go and lie down again."

Even when he has energy, Vusi says he never ventures out anywhere except to the clinic because people are starting to say that he looks like someone with ingculazi (Aids).

Vusi's nights are filled with intense discomfort and despair. "I can't sleep because I have problems with my skin. I have a rash, especially here," he says, indicating his groin.

"I am always scratching. At night I can't sleep because my whole body itches. Sometimes I don't sleep until 5am. And a new thing has just started. This is a pain in my throat. I find it difficult to swallow and my lips are dry and also wet as if the breath coming out is hot."

Vusi's anguish is heightened when he thinks of his pre-HIV past, when he had a job, a live-in girlfriend and enjoyed nights out with his friends. His eyes fix on a pair of flashy sunglasses displayed on the TV, a remnant from a carefree life.

He fetches a handful of well-worn photographs. In one, he poses in a Chris Hani T-shirt. In another, he is being awarded a certificate at KIC, the appliance firm he used to work for in Mandini in northern KwaZulu-Natal. In a third, we catch a glimpse of his girlfriend in a blue T-shirt, looking startled.

"She left me after I told her. She kept saying she would also come for an HIV test, but she was always delaying.

"Then I was in hospital for a long time with TB. I came out of hospital and after a while she left. I don't know what has happened to her because we did not stay in touch. I don't know if she is still alive because she also had the signs."

He last had a girlfriend in1994, after which he decided to forsake all sexual relationships "because I don't want to spread this thing around".

Vusi has been living with the oppressive knowledge that he has been HIV-positive since 1990. He found out after he tried to donate blood.

"I gave blood twice but the third time, they said I mustn't any more because I have this thing in my blood. I felt very bad emotionally and I became very sick. I started getting weaker and weaker. I was always sick. Then I was in hospital for a long time, about six months, because I had TB."

"He was very sick that time," says Sandra. "We were so worried."

At that stage, Vusi's family did not know he had HIV. It took him two years to pluck up the courage to tell them. He did so after he was retrenched from KIC in 1992 and decided to join his family in Chesterville.

"All that time I was thinking about this sickness but I told no one and it made me feel sick inside. It was better after I told my family because they accepted me." His mother, Beatrice, a quiet, dignified woman, remembers it well. "The day he told us, he cried and we all cried. It felt as if his future had been taken away."

Plainly, the Ngemas are a close and caring family. But Aids has cast a huge shadow over their lives and the way they relate to one another.

Beatrice confides in a whisper that she fears for her own health, as she is the one who cared for Eric and is now starting to do the same for Vusi.

"We are a combined family and they are understanding. But the problem lies with me," says Vusi remorsefully. "When I am sitting alone and thinking about all of this and one comes to disturb me, I get very cross. I lose my temper and I get angry."

Maureen says the family has come to accept Vusi's moodiness and they try not to disturb him when he is distressed and withdrawn. But this is difficult to do as he is clearly suffering.

"I feel sick inside. I nearly died with Eric. I don't want Vusi to die. He has been a very good brother to us." - Health-e News Service.

Two small brown bottles of pills govern Peter Adams's life. At 4am, he makes his first grab at the bottle labelled AM and swallows a pill. Two hours later, more pills go down his throat. And exactly 12 hours after that, Peter reaches for his PM bottle and swallows the lot.

"You've got to fit your life around the pills, not the pills into your life. Because unless you comply with your treatment regimen, it won't work. Taking antiretroviral drugs requires a high level of commitment ," says Peter.

And while he does get "fed up with popping pills", Peter knows only too well that if he doesn't take them he will fall back into the terminal phase of Aids which nearly claimed his life six years ago.

"Antiretrovirals only commute the sentence but we are still on death row," says Peter, a middle-aged man with immaculate manners and a quirky sense of humour.

Back then, he was so thin and so sick his doctor told him he probably had three months left to live. He lost his job, excellent salary and professional standing.

This was shortly after his HIV diagnosis in 1995 - when the news was broken to him in a most insensitive manner by a doctor at a private clinic in Johannesburg.

"I had PCP [a type of pneumonia] and oral thrush, so I went to this clinic. While I was vomiting on the floor of the emergency ward, the doctor came in and said at the top of his voice that it was either cancer or Aids.

"One of the worst personal traumas we [people with HIV] have to deal with is the aggressive attitude, even from medical staff. We are sensitive. We notice these things."

After a series of nasty opportunistic infections, Peter was referred to HIV clinician Dr Dennis Sifris who thought his chances of survival were poor.

"I was slightly gaga [mad]," says Peter. "I had shadows on the lungs and all sorts of things. But I decided I was not ready to die just yet. It sounds dramatic but the virus really had a firm grip on my whole body."

A fierce determination to survive carried Peter through a course of antibiotics which resulted in a slight recovery. Then he progressed to the anti-retroviral drug AZT. Because the HI virus mutates very quickly and develops drug resistance fast, treatment with a single drug is not advised.

So it was no wonder that the AZT did not manage to keep Peter's HIV in check. He kept going on other available anti-retrovirals and, in 1996, he had the chance to participate in South Africa's first triple therapy (three drugs) trial.

"I felt like the luckiest man in the world. I took all the drugs, but did not take them all on time because I did not understand the importance of this. So they began to fail."

Like all people on anti-retrovirals, Peter is obsessed with two sets of numbers - his CD4 count, which indicates the health of his immune system, and his viral load, which measures how much virus is in his system.

When his CD4 count plummeted to 69 (a healthy person has a CD4 count of between 600 to 1 200) and he had a vast viral load of over 450 000 copies of virus per millilitre of blood, Peter began a desperate search for access to newer treatments.

He was put on "salvage therapy" and every aspect of his health was monitored. Thus began a new round of heavier pill-popping. "All the pills on time every time - no compromise," he stresses. But it has paid off. Today, Peter's viral load is undetectable (less than 50 copies) and his CD4 count is a healthy 784. Instead of being skeletal, Peter complains about a slightly expanded waistline.

And, despite having been on a long "shopping list" of drugs and having had "nearly every side-effect under the sun", he remains a strong advocate of antiretroviral drugs, believing it is "morally wrong" that poor people do not have access to the drugs.

"The benefits of being able to continue to live and enjoy what I'm doing far outweigh the sacrifices in freedom that come with the pills."

But perhaps the hardest pill Peter has had to swallow is prejudice. A simple desire to spend Christmas with his only brother in the US proved impossible because people with HIV/Aids are allowed into that country only under special circumstances.

"If I hadn't declared my status on the visa application and immigration authorities had found my pills, I'd have been bundled out the country."

An honest answer to a woman sitting next to him on a plane to London about why he took so many pills resulted in him being shunned for the rest of the trip. And there are many more examples of rejection.

Peter confesses that HIV has made him into a virtual recluse.

"HIV is socially unacceptable. We fear rejection so we tend to isolate ourselves from the rest of society," he says.

"We live in fear of death or discovery when all we have done is act as a host to a killer virus. There is still this belief that only promiscuous people get HIV. But all it takes is one 'bonk'.

"I wasn't, by any stretch of the imagination, promiscuous."

The difficulties Peter has experienced with treatment motivated him to start a 24-hour helpline three years ago, including a recorded message answering the most common questions asked by people on antiretrovirals.

For those who want to talk, Peter is officially available for three hours every evening - but he is almost always available via an emergency number.

"The cellphone is great because the person feels safe. I can't see them and I don't know where they come from.

"And I don't pity them. I motivate them because I want them to get to where I am. I have helped hundreds of people across the cultural spectrum. It's not just an African problem. It's everybody's disease. I see them as my family.

"Initially, I charged a small fee but people were so desperate for information I can't turn anyone away."

Peter is presently in discussions with all the pharmaceutical companies that produce antiretroviral drugs and hopes to offer a bigger service next year with a toll-free line.

"My initiatives are supported by the Southern African HIV Clinicians Society," he says . "It represents recognition of the importance of the patient in fighting this dreadful disease."

He also addresses doctors on treatment from a patient's perspective and has helped train about 1 000 doctors so far through the SA Medical Association's Foundation for Professional Development. "It's my ambition to become the most respected patient in the country," says Peter.

At a recent training session in Sandton, Peter's presentation - a package of crucial information about drug compliance that he presents with a serving of wry humour - captivated 100 doctors for four hours.

Drug company product manager Karin Hintze, who has worked on various projects with him for almost two years, says he is the "only person in the country offering such a service".

"Initially he was rather reserved and wary, but as the helpline and the training have picked up, his confidence has grown and he is much more relaxed with people," says Hintze.

Peter says simply that these projects have "given me back my dignity and provided me with a reason to live".

"Sometimes I wish the end had come years ago because living like this can be traumatic. But people need a real role model and I like to think I fit that category." - Health-e News Service

To contact the 24-hour Treatment Helpline call 082-234-0500. Details of direct access to Peter are available on this line.

011125
ST011106

Always watch for outdated information. This article first appeared in 2001. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2001. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .