The health minister and UNAids are jumping the gun by not consulting activists.
All Nanaki Mohajane’s sister, Masentle, wanted to do was to keep her favourite sibling alive.
The treatment was quite simple — Nanaki, from Bloemfontein, was diagnosed HIV-positive in August this year. She had two classic symptoms — HIV-related TB and cryptococcal meningitis. She needed treatment for both, as well as antiretroviral drugs (ARVs) that would help to keep her HIV infection under control.
The Free State health department claims ARVs are widely available in the province, for free.
Instead, Nanaki was buried last Saturday, in a funeral her family believes should never have taken place. She left behind a few packets of antibiotics she received from a clinic and a death certificate stating TB and meningitis as the causes of death.
Nanaki’s daughters, aged seven and 15, will have to manage without their mother.
”It’s the government and their lies that took my sister,” Masentle said, ”not HIV.”
It’s a story heard repeatedly on a visit to the Free State two weeks ago. The province says everything is fine, whereas HIV clinics and patients disagree.
Nanaki was bounced from pillar to post, starting at the University of the Free State’s clinic in Phelindaba, in Bloemfontein, which found her case ”too complex” to deal with. She was then moved to Batho clinic in Batho location, which gave her a number of dates when treatment would start.
Eventually, Nanaki turned to the feared National District Hospital in Bloemfontein. Free Staters told me: ”If you enter National, you don’t come out alive.”
Nanaki was in hospital for a week — without receiving a single anti-HIV drug and on a drip her sister says was continually blocked.
”When I asked them to unblock it and wanted to find out whether my sister would be all right, the nurses ordered me to leave the room while they ‘fix’ things and told me that they knew nothing about Nanaki’s condition.”
On the day before she died, Masentle said, Nanaki’s face was covered, her nostrils filled with blood and her mouth ”black” from lack of oxygen. She was sweating profusely, her body wrapped in blankets.
To find out what members of the public are told about HIV, I visited the university clinic with a Treatment Action Campaign (TAC) official, Sello Mokhalipi. We presented ourselves as people wanting help for an HIV-infected domestic worker. Scores of patients were waiting for their monthly dose of ARVs.
”I can’t talk for long,” the senior nurse on duty, Jane Kganare (not her real name) said, ”or some patients won’t see me today.”
The clinic’s three nurses see 60 patients a day — amounting to about six-and-a-half minutes a patient.
”We’re not coping,” Kganare said, sighing. ”We can’t give patients proper care on such short visits, but we can’t do anything about it. We’ve asked for more nurses, but the government can give [more] only once they’ve got money,” she said, laughing cynically.
I told Kganare that the person I had come about was HIV-positive and asked how soon she could be helped.
”It depends on her CD4 count. We give ARVs if the count is below 200. It can take a couple of months for the treatment to start because we’re understaffed and first need to put the patient on drug readiness courses. But if the CD4 count is below 50, we start treatment immediately.”
That wasn’t 23-year-old Lerato Tsamai’s experience. In August her CD4 count was 25 — she had almost no immune system. ”I went to the clinic and they said they don’t have ARVs for new patients,” she said.
Tsamai’s parents are dead, leaving her to care for her teenage brothers. She also ended up in the National District Hospital without ARVs or TB treatment and escaped death only when the TAC moved her to a private, United States government-funded clinic, where she received free treatment. ”I don’t trust the government,” she says. ”They can’t help me.”
Kganare said her clinic accepts 30 new patients a week — but many more are in need. ”We are under-budgeted,” she acknowledges.
”We thought this year the number of patients would double, but it tripled or more. We need to ask for more money.”
Will the money arrive in time to save them? ”I don’t know. I just do my best with what I have,” she said wearily.
While we’re at the clinic, Mokhalipi gets a call from the organisation’s representative in Qwa-Qwa. ”No new patients are being initiated on ARVs in my region,” his colleague said. ”I’ve just had it confirmed. I also went to the clinics myself.”
Moments later he gets a similar message from Harrismith.
The activist, himself HIV-positive and on ARVs, slumps against a wall. ”What do you do? We’re dealing with a provincial government in denial and a health MEC [Sisi Mabe] that many here are calling the ‘new Manto’.
”We’re running into another moratorium on ARVs, like last year. In fact, most clinics are already there.”
At Mmabana TB clinic in Phahameng, where Nanaki Mohajane could not access TB treatment, the nurse told us: ”We often don’t have drugs. We have to borrow TB drugs from other sites — if they have. The system is failing us and we don’t know what to do. Our requests are falling on deaf ears.”
South Africa is among the world’s 10 worst-performing countries on TB control and has one of the highest rates of HIV-related TB.
Mokhalipi and the Free State HIV/Aids Coalition wrote seven letters to Mabe requesting an urgent meeting. They received a response only when they alerted Premier Ace Magashule. At the meeting, Mokhalipi said, Mabe ordered the activists to put their questions in writing and promised to reply. ”But until today we haven’t heard a word back.”
Throughout the Bloemfontein townships, HIV-infected people and Aids activists express disgust at the Free State government’s gala dinners and lavish spending on luxury vehicles, while people are dying from lack of ARVs.
”I don’t understand it — we don’t even have Panado in some clinics, let alone ARVs. But Mabe spends millions of rands on functions and the premier buys cars worth R1,2-million each. What’s happened to our country?” Mokhalipi asked.
He is pinning his hopes on national Health Minister Aaron Motsoaledi. ”He’s a good minister, but he needs to clean up this province soon.”
Health MEC Sisi Mabe responds:
Free State health minister Sisi Mabe is adamant that there’s ”no shortage” of antiretroviral drugs in the Free State and that ”there is nothing out of stock anywhere here”.
Mabe also claimed that a patient with a CD4 count lower than 50 cannot be put on to ARVs immediately as they will ”react negatively” to the medication.
Defending the recent purchase of a fleet of costly Mercedes-Benzes for members of the Free State cabinet, which Aids activists have lambasted, she said most Free Staters are “fine” with government leaders having luxury official vehicles and that only the media objected.
The fleet purchase, she said, ”was a saving, because it was bought in bulk” and therefore ”at a discount”.
The president of the South African HIV Clinicians Society, Francois Venter, reacted with outrage, saying Mabe’s ”incorrect” reasoning on the CD4 count issue will result in ”death sentences” for patients and that Mabe needs to familiarise herself with government guidelines.
”Her comments can easily be misinterpreted by health workers to suggest that people with CD4s of less than 50 have no prognosis. On the contrary, they usually do very well and should get ARVs as soon as possible, ideally within two weeks of their CD4 test. It’s national policy.”
Venter has shown the transcript of the Mail & Guardian’s interview with Mabe to the acting HIV/Aids director, Thobile Mbengashe, who, he said, was ”horrified”.
Mbengashe, however, said he cannot share his concerns with the M&G, as communication policies do not allow it.
But health department spokesperson Fidel Hadebe has undertaken to obtain written responses to Mabe’s remarks from Aaron Motsoaledi, the national health minister.
Mabe told the M&G she had answered all the Treatment Action Campaign’s requests and denied that she had hosted ”even one” party or gala dinner since April.
The TAC’s Sello Mokhalipi said he had attended one such function in person.
Mabe claimed HIV patients at the National District Hospital never waited longer than six to 12 weeks for treatment, saying she would investigate the cases of Nanaki Mohajane and Lerato Tsamai.
On being called ”the new Manto”, she said: ”It’s news to me. I don’t know where it comes from.”
Mia Malan is the founder and editor-in-chief of Bhekisisa. She has worked in newsrooms in Johannesburg, Nairobi and Washington, DC, winning more than 30 awards for her radio, print and television work.