In-depth: South Africa - The world’s biggest ARV Programme?
SOUTH AFRICA: Disability grant cutoff threatens livelihoods of people on treatment
The Mlotswa family gathered in front of their Thembisa home in 2004.Three out of nine family members who are HIV positive are now receiving treatment through the government's ARV treatment programme
JOHANNESBURG, 14 September 2006 (IRIN In-Depth) - It's a rainy day in Thembisa, a sprawling township north of Johannesburg, South Africa's commercial hub, where Maria, 48, the matriarch of the Mlotswa* family, her two sisters, their 19 children and five grandchildren - 27 people in total - live in their small two-bedroom home. A pot of 'pap' (maizemeal porridge) bubbles on the two-ring stove while children of all ages squeal and tumble through the front room.
Maria is HIV positive, as are at least eight members spanning three generations of her family. There are photographs on the bedroom wall of those taken by AIDS: a husband lost to TB in 2001; a daughter and a son, both buried on the same day two years later, and a grandchild who lived for just three weeks after its birth in 2004. Her eldest daughter is in hospital with pneumonia and one of her HIV-positive grandchildren is also unwell.
Maria and the two grandchildren orphaned by her daughter's death are the only household members benefiting from the government's ARV treatment programme. Besides the daughter with pneumonia, she does not know how many of the others are sick enough to qualify for the drugs. After nine months of ARV treatment Maria is still suffering from asthma and painfully swollen feet, yet what she fears most besides death is a full recovery of her health.
ARVs may have saved her life, but they pose a threat to Maria's ability to support her family, none of whom are working. She is well aware that the R800 (US$115) a month disability grant she receives from the government is temporary and contingent on her CD4 count - which measures the strength of the immune system - remaining below 200. The price of gaining access to the life-prolonging drugs is likely be the loss of the money that buys food for the household.
Photo: Mujahid Safodien/PlusNews
|As only three out of 27 family members are receiving social grants, lunch is usually pap and cabbage
The disability grant is the only form of social security available to working-age adults in South Africa. It is supposed to ensure that patients can afford proper nutrition and transport to clinics but, given the country's estimated 40 percent unemployment, it is often used to support entire families. Between 2000 and 2004, the percentage of South Africans accessing the grant rose from 1 percent to 8 percent.
The Department of Social Development has been concerned by the possibility of fraud and cracked down in its annual review process. A number of healthcare workers and counsellors PlusNews spoke to reported increasing numbers of HIV-positive clients losing their disability grants after beginning ARV treatment.
Some voiced their suspicion that patients who relied on the grant to put food on the table were deliberately defaulting on treatment to regain access to the much-needed income. "They panic, because that [grant] money makes a big difference to their families," said Sheila Mphuting, a careworker from Orange Farm, a township south of Johannesburg.
Besides the disability grant, Maria receives two foster-care grants of R530 ($75) a month for the orphans and lets a shack in their back yard for R150 ($21) a month. After many visits to the Department of Home Affairs, 10 family members still lack the identification document they need to access medical treatment, social grants or find formal employment.
Nutritional support is an important part of the treatment plan and is supposed to be provided to those who need it, but Maria receives neither supplements nor food parcels from the clinic where she collects her drugs. Her pastor occasionally gives the family a bag of maizemeal, and free bread is sometimes available from a local home-based care organisation. Rats devoured a patch of spinach she tried to grow in the back yard.
Photo: Mujahid Safodien/PlusNews
|Two of Maria's grandchildren hold up a picture of their mother who died of AIDS-related illness in 2003. Both children are receiving free ARV treatment
She never misses her monthly R180 ($25) payment to the local burial society. Should there be another death in the family, the payments will ensure that a proper funeral is provided.
In a country where HIV disproportionately affects the poor, the disease is often just one of many elements that combine to keep families in poverty. Mark Heywood, national treasurer of AIDS lobby group, the Treatment Action Campaign (TAC), says the National AIDS Council has not taken into sufficient account the socioeconomic impact of HIV/AIDS on individuals, or seriously discussed a more integrated approach involving other government departments.
The TAC is researching alternatives to the disability grant that would provide ongoing financial support to people with chronic diseases like HIV. But Dr Nomonde Xundu, head of the government's HIV/AIDS unit, dismissed the idea: "You can't have an ongoing grant when you have programmes for improving people's health. We need to help people not to depend on the State."
Asked what difference the treatment programme has made to Maria's life, she briefly considered her overcrowded home. "I think it's the same as before," she said. "I still keep on crying."
*Not their real name