Treating TB as a crime

Six years ago, almost to the day, Mark Heywood (then head of the AIDS Law Project) warned that, while squabbling over human rights and other issues around HIV, the country had allowed the TB epidemic to grow out of control.

Addressing a plenary at the TB Conference, Heywood expressed his concern that the crisis of TB was, at the time, being met with political indifference. He revealed that he had conversations with senior health department leaders as far back as 2002, in which they briefed him on multidrug-resistant TB (MDR-TB) tipping to epidemic proportions.

In the same talk, Heywood questioned the state’s policy at the time to isolate MDR-TB and extensively-drug-resistant TB (XDR-TB) patients. ‘We need to ask why people feel the need to escape from a hospital. Why is there barbed wire and guards? We need to ask whether we are limiting human rights in a way which is dignified as there is no legal basis for incarceration,’ he said.

Shortly after, Heywood was attacked from the floor by the then Director-General for Health, Thami Mseleku, who said human rights were not relevant to the considerations of health policy in a developmental state. Mseleku was driving a policy at the time of creating more beds and TB hospitals – he was not prepared to consider decentralisation.

Fast forward six years. The road to Fort Grey turns off from the East London airport road and the N2 heading west. The potholed tarmac skirts past an informal settlement, then a slightly more built-up neighbourhood with spaza shops proudly advertising names such as White House Supermarket. At a T-junction a haggard sign points the way to Fort Grey and the dirt road follows a forest track, winding past an overgrown graveyard before ending at a massive gate with uniformed guards. Access is controlled and, while visitors are allowed, patients are clearly not allowed to leave freely. In fact, blue uniforms with bold lettering ‘Fort Grey TB Hospital’ on the back ensures that patients are distinguishable from the rest.

An almost three metre high barbed wire fence surrounds the hospital grounds, with many buildings dotted inside. To the right, row upon row of small square huts house the patients in communal rooms.

Guards in green and yellow uniforms, patrol the perimeter.

“[The staff] often said they wish they could dig a big hole and throw all of us in it because we were infectious.”

One guard walks up to ask us what our business is. We explain that we have come to see a patient. Asked what he is guarding, he laughs: ‘We make sure the patients don’t have sex and if we catch them we give them a few good smacks.’

Xolelwa Joni was admitted to Fort Grey in July 2012 and her memories are not pleasant.

‘There were 30 female XDR-TB patients in one ward. Both converted and unconverted patients, we were all combined into one ward.’ Xolelwa recalled that when patients died they were left in the bed until the doctor was able to officially declare them dead – this usually took about two hours.

‘Every day we woke up at 4am to bath, but there were only two bath tubs and two toilets for all 30 of us. The toilets could not flush,’ she recalled.

From 7am to 8am patients lined up for their treatment and breakfast. Lunch was at noon and dinner at 4pm. The food was terrible.

‘The staff attitude was very bad. They often said they wish they could dig a big hole and throw all of us in it because we were infectious.’

Patients would have to wear the hospital-issue outfits for a week, with clean linen and clothes made available only on Fridays. Patients were allowed to take only one outfit at a time.

According to Xolelwa, those patients who complained were punished with their incarceration time extended.

After Xolelwa was discharged, she had to return every month for her review and to collect her supply of drugs, which included the injectable drug.

Unlike the nurses at the hospital, who were not interested in adminstering an anaesthetic, the clinic nurses went out of their way to reduce the pain caused by the injection, says Xolelwa. The clinic nurses would first administer the anaesthetic, but at the hospital they just mixed it all and the pain was excruciating.

The Eastern Cape Health Department failed to respond to a number of questions.