Opposite sides of a deadly coin – AIDS

It’s World Aids Day on Saturday. Kerry Cullinan spoke to two men who have been living with HIV/Aids

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.

About the author

Kerry Cullinan

Kerry Cullinan is the Managing Editor at Health-e News Service. Follow her on Twitter @kerrycullinan11