THE WORLDPOST
03/13/2013 07:38 am ET

South African HIV Patients Forced To Choose Between Death Or A Disability Grant

By Samantha Thornton for The Pulitzer Center.

Jabu Van Niekerk is worried about the lives of the clients she serves through the Raphael Centre, an HIV/AIDS outreach and support organization for the residents of Grahamstown in South Africa's Eastern Cape. One of her biggest fears is what she believes will become the country's next health care crisis—that some HIV positive residents will stop taking their medications in order to receive a disability grant from the government.

“Think of it like this. We have an unemployment rate in this community that has been estimated up to 80 percent. There is no work. You live in poverty, and suddenly there is the hope of getting a monthly income via the disability grant. I’ve heard it described to me as winning the lottery,” Van Niekerk said as she told the story of a Raphael Center client forced to make the decision between life and death in order to feed her family.

The disability grant is available to residents who are deemed too sick to work—especially those with worsening stages of HIV and AIDS. One of the ways an HIV positive person would qualify for the grant is to have a CD4 count that is lower than 350 or 200 depending on the measure.

If a patient’s CD4 count is that low, it also means that person will qualify to receive antiretroviral (ARV) medication, which in many cases will raise the CD4 count to a level that is no longer supported by the disability grant. The monthly income from the grant disappears and the resident is forced to resume work.

“This is where abuse starts occurring,” Van Niekerk explains. “Some people are in the position where a whole family depends on that disability grant. No matter what, they cannot afford to lose it.” So what do they do? They stop taking the antiretrovirals in the prescribed way.

Without treatment, a person who enters the AIDS phase of the infection will decline and die.

The Raphael Centre isn’t the only organization aware of the problems associated with the disability grant. The South African Social Security Agency (SASSA) has published a number of reports focused on the backlash of grant abuse and the probable successes and failures of social security grants in recent years. One such report published in 2006 confirms the risk of welfare fraud when it comes to disability grants. It found cases of HIV positive mothers defaulting on their ARV medication in order to drive their CD4 count low enough to qualify for the disability grant.

The report also suggests that HIV positive mothers have an incentive to compromise their health due to employment discrimination—their HIV status makes it difficult to obtain work.

“We are still reeling from the recent death of one of our clients. This death really surprised us because we were under the impression that she was taking her medication. At least, when the clinics checked her pull status [medication refill report] she was always up to date. Yet, her health failed very suddenly, and she died,” Van Niekerk says. It was discovered later that the client had been selling some of her tablets for extra income.

This is the tragedy, Van Niekerk says, “A woman was forced into making a terrible choice. She knew that we would try everything to try and persuade her to take care of her health. And so she died, almost more burdened because she couldn’t come to us for support.”

The grant enabled her and her family a few months of eating, but the cost was her life and the undetermined fate of her children.

To learn more about this topic, visit Samantha Thornton's Pulitzer Center page.

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