Bongani Ngcobo looks up at the shacks perched unsteadily on the towering green hills around him. He steps off the tar road on to the sandy path – the starting point of his homebound hike. His shack is about 50m away but the uphill walk makes it seem like kilometres.
He slowly makes his way past the ramshackle spaza shop selling amagwinya (a fried ball of dough also called vetkoek) for R1.50 each. His small frame winds through the shacks as he takes careful steps to avoid slipping on the sand.
Breathing heavily, he hesitates at the door of his shack. He has no good news for his wife – they still have no money and tonight’s dinner will have to come from friends, if at all.
Less than a year ago, Ngcobo may have come home from a day’s work, greeted his wife with a smile – and probably a packet of groceries. This time last year he did not sigh despondently at the thought of any given evening’s dinner.
He was diagnosed with multidrug-resistant tuberculosis (MDR-TB) in November last year. He then went to Fosa TB Hospital near Durban for treatment and applied for a government disability grant because he was too sick to work. But the doctor refused to approve his case.
“He looked at my shirt,” Ngcobo remembers.
Bought years ago for about R500 while he had a job and salary, the branded Hugo Boss button up garment is his Sunday best reserved for special occasions. Ngcobo clicks his tongue, frustrated: “He said: ‘You dress too well to be poor’.”
The shirt that a doctor deemed was too nice for a poor man to wear.
Assisting those with debilitating illnesses
For almost two decades the World Health Organisation (WHO) has called for social assistance for people with debilitating illnesses. In 2005 the World Health Assembly adopted a resolution that advocates “everyone should be able to access health services and not be subject to financial hardships in doing so”.
Last year, the WHO published their post-2015 TB strategy aimed at eradicating the disease by 2035. One of the focal points is that in 10 years there should be “no affected families facing catastrophic costs due to tuberculosis”, noting that the economic burden “is, on average, greater for persons with MDR-TB and for the poorest”.
MDR-TB is a strain of tuberculosis resistant to two of the most common TB drugs and is consequently complicated to treat, according to Julia Hill from the South African branch of Médecins Sans Frontières.
Patients take toxic drugs for two years and, locally, only 48% are cured while many suffer serious side effects, such as deafness, she told Bhekisisa earlier this year. People diagnosed with MDR-TB also have to go to hospital when they start treatment, resulting in many losing their jobs, with devastating effects if the patient is a breadwinner.
Ngcobo is 42, although his thin body and lined face make him seem a decade older.
“I worked as a night-time security guard for many years but once I got sick I had to go to hospital and they gave my job away,” he says.
From semi-rural Inanda, about 30km outside Durban in KwaZulu-Natal, he has little formal education and lives in a one-room house with his wife, who is unemployed.
When he was discharged from Fosa TB Hospital after seven months of treatment, he hoped he could go back to work but he soon realised he was too weak. His job as a security guard was not an option because his shifts are in the open with no shelter.
But the doctor believed he didn’t deserve a temporary disability grant – his application was returned, saying he was fit to work. But Ngcobo says he was physically unfit and unfairly denied access to support – based on the clothes he wore.
Ngcobo often goes hungry and takes his medicine on an empty stomach.
TB and poverty
Much research has been done on the link between TB and poverty – it is linked to greater risk of infection and a greater chance of dying from the disease. A 2015 study published in Social Science & Medicine, which tracked the economic burden on South African TB patients over a year, notes that it is particularly important to reduce the effect of the cost of the illness “due to the synergy between poverty and TB disease”.
The study points out that, although the government “can be commended” for making grants available to TB patients in this condition, only 5% of those in the study received financial assistance.
According to the International Labour Organisation, only one in five people in the world have access to social security protection “that also includes cover for lost wages in the event of illness”. They say this drops to less than one in 10 for sub-Saharan Africa.
In this context they describe the local social support system as “progressive”.
The South African Social Security Agency (Sassa) administers social grants, including the disability grant Ngcobo applied for. It is given to people with a disability that renders them unable to work. TB patients apply for a temporary grant of up to R1 420 a month, which lasts between six months and a year.
A medical assessment is required to confirm this disability and a means test is used to see whether patients are poor. But Ngcobo did not get the chance to prove this because the doctor who evaluated his application “said that I can afford a good shirt and there are people who need the grant more than I do”.
System under pressure
In 2008, Sassa instituted changes to their disability grant model because of “excessive pressure on the grant system”.
In 2000, only 600 000 disability grants were issued, but by 2007 the number of receipts had exploded to more than 1.4-million, according to their annual reports. Since then, the number decreased significantly to 1.1-million being approved last year.
In Sassa’s latest annual report (2013-14) it states that “quality improvements in the disability management space regarding the training of doctors to improve assessment proficiency, gatekeeping and assessment quality control measures have led to a sustained decrease in disability grant beneficiary numbers over the years”.
Sassa spokesperson Kgocomo Diseko says that no one can be denied a grant based on their clothing choices. “We take this seriously and would like to investigate this matter further to assist.”
Diseko has committed to a Sassa-led investigation into Ngcobo’s case and will provide Bhekisisa with details of the outcome.
Yogan Pillay, deputy director general for HIV, TB and maternal health at the national health department, says: “The patient should be assessed by the medical officer on functional ability to work alone, and not on any other factor.”
He says that although “we can’t police every doctor” Ngcobo can apply at a Sassa office to be reassessed. “But we are currently looking at ways to streamline access to better support for our TB patients.”
According to Diseko, Ngcobo also has a right to lodge a complaint with Sassa or the health department “if they are treated in an unprofessional way by either a Sassa official or doctor respectively”.
Ngcobo survives on medicine and little else.
Depending on the goodwill of others
Sandile Gumede, from the provincial branch of the health lobby organisation Treatment Action Campaign says bureaucracy should not “deny deserving patients access” to a grant, which, for Ngcobo, would be his only source of income.
He says he feeds himself and his wife “with the compassion” of his neighbours who donate money or groceries when they can, but “it’s stressful to be sick and worry about something as simple as food”.
Ngcobo shakes his head slowly from side to side. He struggles to his feet, leaning on his plastic chair. “I’m still weak from the TB but also because I don’t have enough to eat,” he says, coughing with the strain.
He says something to his wife in isiZulu and she begins frantically searching around the room.
She picks up a luminous green plastic basket filled with washing.
Pulling out a creased white and blue striped shirt, she hands it to Ngcobo. Holding it up in front of him he says that this is the shirt he wore on the day he left hospital.
“It was a happy day so I wore my best shirt.” He points to the Boss emblem on its pocket. “It is a good shirt but I bought this when I was working,” he says, flinging the garment on the bed.
“How can I be punished for that?”
[This story was originally published on October 1 2015] Tell us what you think – make a comment and rate our story on a scale of 1 (really bad) to 10 (excellent). We’d love to hear from you.