“A 36-year-old woman died in Pimville of Aids” Nombuyiselo Maphongwane says, musing on how the government will eulogise her when she dies. “We have become statistics. When the government sits to make decisions on HIV/Aids, they exclude us”.
On April 17 last year Maphongwane had been living with HIV for five years and did not expect to live beyond March 2003. She left her receptionist job six months ago because she was too weak to even carry her handbag or stand at the bus stop. April 17 is an important anniversary in the Aids history of South Africa, for on this day last year the Cabinet reaffirmed that HIV causes Aids after 18 months of a damaging denialist campaign led by President Thabo Mbeki.
The government also pledged to work towards universal access to treatment and to reduce the costs of anti-retroviral drugs. Sitting in a bedroom, Maphongwane coughs periodically with her painfully thin frame covered in clothing small enough to fit a child. She talks about what it felt like when she was first diagnosed in 1997. Her illness does not hide the feisty strength of character when she talks about her life. “I disclosed in a week and thankfully was never rejected.”
Calling for a blanket, she details all the symptoms and illnesses she has suffered over the years. She has a fever and sweats and shivers while talking about how often she had pneumonia and flu. Over the past five years she has suffered from coughing, diarrhea, shingles, pneumonia, vomiting, fever and constant flu, but she gets out of bed and washes herself each day.
A year later the government has failed her, says Maphongwane. She is dying from Aids, the result of a delayed a national treatment plan that would begin the process of rolling out antiretroviral treatment. “We have given government enough time by now. They should have provided us with antiretroviral drugs, food and supplements.”
She scoffs at arguments that the government has insufficient resources. She says there is no evidence in hospitals and clinics that food parcels or maize meal will be handed out, as was promised last year. “I need the drugs and the food”.
A joint Treasury /Health Department task team has taken almost a year to budget for a treatment programme for people like Maphongwane. At present the government provides anti-Aids drugs to pregnant-mothers and new-born babies and to the survivors of rape.
Although there is progress in prevention and care for those living with HIV/Aids, there is still a high degree of scepticism about drug treatment – a legacy of Mbeki’s view that the drugs are toxic. While Mbeki has not made overtly dissident statements in the past year, he now exhibits a lack of interest in the pandemic.
An analysis of 20 speeches in the past year by Mbeki reveals paltry reference to HIV/Aids. In almost all the speeches, Mbeki never misses an opportunity to punt New Partnership for Africa’s Development (Nepad), a policy aimed at spearheading African renaissance.
The energy and passion he uses in reference to Nepad is visibly absent when he refers to Aids. It is also telling that any reference to Aids is made alongside those with tuberculosis and malaria.
Mbeki’s lack of reference to Aids is an insult to Mapbongwane. “They do not know how I feel. What it feels like to be sick. Even those who are HIV- positive in government can afford food and [anti-retrovirals].” Maphongwane’s struggle to survive has been made more difficult by her lack of resources. She voluntary resigned from her job last October and was left with four months salary.
“My mother was upset when I left my job because she worried where I was going to get food from”. This month Maphongwane will have to queue for a disability grant. She proudly shows us photographs of a time when she was healthier, a young professional woman able to support herself but now wracked by a disease and failed by the government meant to uphold her access to treatment.
For 10 days now she has been on anti-retroviral drugs. Her family and friends sent out a memorandum calling for donations so she could buy the one-month supply of anti-retroviral drugs that cost R1370. “I am worried about not getting the [anti-retrovirals] after this month.”
She is hoping to get on an HIV programme at Baragwanath hospital in Johannesburg. But she dreads the long queues and constant referrals that may lead to exclusion if she does not meet the criteria for the programme.
“The process to get on the programme may take up to three months and I can’t afford to buy these drugs every month.” “People who are as sick as I am should just be able to walk into the hospital and be admitted to the programme. But now you are sent back and forth. It makes me tired.
“They are playing around with my time. This government can supply us with ‘EPAP’ [a highly nutritious maize recommended for people to boost their immunity] and the [anti-retrovirals] and vitamins and not just make excuses.” In recent months there has been emphasis by Minister of Health Manto Tshabalala-Msimang on nutrition and herbal medicine as responses to delaying the onset of full-blown Aids in HIV-positive patients. At numerous press conferences Tshabalala-Msimang and Deputy President Jacob Zuma focus on nutrition as isolated from treatment.
“I know what the government says about good nutrition but look at Freddie Mercury, he had lots of money. He could afford anything and he still died.” Maphongwane says.
Jerry Coovadia, professor at the Centre for HIV/Aids Networking at the Nelson R Mandela School of Medicine, University of Natal, says the nutrition debate is far from a new one and was around since the beginning of time. “There are a whole range of responses and treatments for HIV. An adequate diet is always necessary. This cannot be an either-or debate”.
Supreme Court of Appeal Judge Edwin Cameron says: “No sane person would deny the vital importance of nutrition. “The difficulty appears to lie with government, which still refuses to accept the centrality of anti-retroviral treatment to the success of all the other components of a programme that will save lives in South Africa.”
Maphongwane has tried all the herbal remedies and the traditional healers’ advice that the health minister has made the central plank of her fight against HIV/Aids. “What I don’t like about being ill is that the sickness is being commercialised. You always hear of someone saying, ‘You know, I know a women she sells herbs, or there is a man who has a cure.’
Maphongwane has gone to a traditional healer who cut her with a razor as part of her treatment and asked for R3 000 for treatment. “I did not return to the healer because I did not believe it worked.” She also tried herbal medicine called “Miracle Muti that seemed to help”. When she had a cough she treated herself by drinking an herb called “Umhlongane” and the cough stopped.
Now she is on anti-retroviral drugs. “I have tried it all.” It is clear that Maphongwane has accepted the prospect of death but she still lights each day to live normally. I looked forward to dying and it never came. It did not happen when I thought it would so now I am just carrying on”.