UN Integrated Regional Information Networks
May 15, 2002
Living Without HIV/Aids Drugs
Chriselda Kananda was seven months pregnant when she discovered she was HIV positive in 1997. She has been living healthily and positively without any antiretroviral treatment ever since.
“The first day is your worst nightmare come true, because all you’re thinking is, ‘I am going to die now’,” she told IRIN.
After that, she desperately sought any AIDS treatment available. “Then I realised that all I was doing was fighting it. So I stopped. I told myself that I would host this virus and I would respect it,” she said.
For her, being diagnosed with the HI virus was a wake up call. “I just went back to the basics of eating and living healthy, just like everyone else should be doing”.
Medical advisor, Dr Harold Seftel, agrees that eating and living healthy when HIV positive is one of the best therapies available. “If they look after themselves like that, they can live for years and years”.
But according to Seftel, eating can also be a problem for many people that are HIV positive as the body uses more energy when fighting infections and they need to eat more than normal. Some medications can upset the stomach and opportunistic infections can affect the mouth or throat, making it difficult to eat.
When told of their HIV status, patients needed to be told about all the options available to them. Taking antiretroviral drugs was just one of them, and patients had to be informed of any possible side effects of the treatment, he added.
“This information is freely available, there is no mystery involved. People have an exaggerated idea of the side effects involved when taking antiretroviral therapy. At the end of the day, all you need is some common sense.”
Treatment Coordinator for the National Association of People Living with HIV/AIDS (NAPWA), Wanda Masia, said that side effects and the prohibitive cost of the drugs are the main reasons why many of NAPWA’S members choose not to take them.
But any side effects associated with antiretroviral therapy differed from person to person and it was up to the individual to make an informed choice after being presented with adequate information, she added.
“Doctors sometimes don’t explain everything clearly and many counsellors don’t know anything themselves. To them, if you are HIV positive, you should just take the drugs,” she said.
The “soft spoken, pitiful voices” of the counsellors when talking about living with AIDS, do nothing for people who need to know how to handle their lives in a positive way, said Kananda.
“There is so much focus on making people feel sorry for themselves that we are losing focus of the real issues,” she added.
The real issues? “Accept your status. Realise that without a change of
behaviour, you are not going to get better. If you carry on sleeping around, you are going to die. If you don’t eat properly, you are going to die.”
For Kananda, living without antiretroviral drugs is simple, it is the media and others who are “making too much” about the drugs. “There’s nothing really to this,” she said.
But for many HIV positive people, things are not that easy. They don’t have access to antiretroviral drugs because they are too poor to afford them, and they are too poor to eat healthily.
“Poverty is an important issue, if they don’t have the money to even buy food, then they are in trouble,” Seftel said.
NAPWA is trying to secure social welfare for poor people living with HIV/AIDS, “so that they can at least have a good diet”, said Wanda.
The association has launched nationwide campaigns focusing on “wellness management and positive living” to educate people and show them that there is more to HIV/AIDS than AIDS drugs, she added.
“Instead of spending all that money on fancy loveLife billboards [a sexual health organisation], why don’t they buy land and grow vegetables for HIV positive people so that they can feed themselves?” asked Kananda.
More positive stories were needed as the media was misleading people with images of death, she said.
“We need to see more people taking charge of their lives, and not being controlled by the virus or any drugs,” added.