The most widely reported case involves Mthandazo Sibanda from Bulawayo, Zimbabwe, who was diagnosed with MDR-TB while working in Botswana and eventually was deported back to Zimbabwe with his family.
“From the beginning, there was terrible mismanagement of his case,” said Akugizibwe.
One issue is that he kept on being given different HIV test results: first that he was HIV-positive; then he was told that that had been a mistake and that he was HIV-negative; but later he was informed that he was indeed HIV-positive after all.
In addition, for the first few months on treatment, an essential component of a second-line TB treatment, amikacin, was omitted from his regimen. It was added afterwards but by this point, Mr Sibanda was experiencing severe side-effects — including loss of his hearing — and so he stopped taking his TB treatment, apparently in frustration — and he drew his case to the attention of local newspapers.
In response to his treatment discontinuation, Botswana declared him persona non grata, and he was served with deportation papers while in the hospital. The rationale was that, since he had quit treatment, he was a risk to the public. But he then was taken out of hospital and put in prison where there was no infection control (and even the prison guards were not provided with respirators) and with no access to treatment.
“This raises the first concern with these dramatic coercive measures that were seeing now for so-called TB control,” said Akugizibwe. “The patient is being painted as the criminal whereas those who are implementing these measures aren’t taking sufficient steps to ensure the infection control which they state is their primary objective with such harsh measures.”
At this point, ARASA and the Botswana Treatment Literacy Coalition (BTLC) became involved. They worked with BONELA - the Botswana Network on Ethics, Law and HIV/AIDS to put together a case to take to court.
The first issue was to get Mr Sibanda onto treatment, for which he was now desperate, as his health had deteriorated. This succeeded, but the deportation order was still standing.
But before the rest of the case went to court, he decided to withdraw his appeal against deportation because of his socio-economic challenges he and his family would be facing, which are common to many people with MDR-TB in resource-limited settings: If he was going to remain in Botswana for treatment he was going to have to be confined for the full duration of treatment (up to 24 months) because he was considered at risk of non-adherence due to the time he quit treatment because of toxicity. But he was the sole breadwinner for his family and there would be no measures put in place to provide for his family.
This is similar to the situation that people with MDR-TB face in several countries in Southern Africa, where they may be kept in isolation for long periods — with no provision being made to provide socioeconomic support for their families during this period.
“This is a major barrier to seeking care and treatment,” said Akugizibwe. “People need to be able to survive, and need to be able to eat, and that’s always going to be their primary concern.”
As a result, Mr Sibanda made the choice to go back to a country where there isn’t really any treatment for people with MDR-TB because of the poor state of the health system there. So he and his family were taken to the border and evicted from Botswana.
Akugizibwe added that while Mr Sibanda was being treated so harshly by the government of Botswana, nothing was done about the clinicians who had been providing him with sub-optimal treatment for three months, increasing the risk that he might develop MDR-TB.
“If these sort of measures are really about urgency, then we have to seem being applied in all directions, not just toward the patient. I think this is a perfect example of the DR-TB hysteria, which isn’t allowing us to have a comprehensive and rational response,” she said.
It may also be a violation of international law.
“The government of Botswana’s deportation of someone with drug-resistant TB to a country, where there is no available diagnostic and treatment facility, is a violation of both the person’s individual’s rights in terms of the right to life — because he’s got zero chance for treatment — and also a violation of international health regulations about deporting an infectious case across the border. And that’s happening through the SADC (Southern African Development Community) region,” said Joe Amon, Director of the Health and Human Rights Program at Human Rights Watch.
In fact, Akugizibwe told aidsmap.com about another case which has come to ARASA’s attention in South Africa. In this case, the migrant is from Mozambique, with extrapulmonary (abdominal) DR-TB and less than 100 CD4 cells. He is one of the many victims of the xenophobic riots earlier this year subsequently classified as an illegal migrant and facing deportation.
Activists are arguing that he is far too ill to consider disrupting his care, and say he should not be sent across the border right now