Some migrant workers in southern Africa who have been diagnosed with MDR-TB are being deposited at the border of their home country without treatment or referral to care, according to reports at the World Lung Health Conference held in Paris from October 17th-20th.
In some cases, it is the migrant’s employer that is sending ill patients back to their home country, usually a mining company . In other cases, the host government is deporting patients with active infectious MDR-TB, in some cases to countries where they are unlikely to find adequate treatment.
These evictions can amount to a death sentence; and since there is a risk that the patient with drug-resistant TB might go on to infect people in his home country, it may also be a violation of international law.
“This issue of cross-border management of TB and HIV is really something that we need to give more focused attention to,” said Paula Akugizibwe of the AIDS and Rights Alliance for Southern Africa, who raised the topic at a pre-conference satellite symposium on TB/HIV sponsored by the Treatment Action Group, and at a special session on Human Rights and MDR-TB care sponsored by the Open Society Institute and the World Health Organisation.
Botswana deports Mthandazo Sibanda
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
Miners
There are also many cases where the mining companies in South Africa have been sending miners with MDR-TB and sometimes XDR-TB back to their home countries without referral.
Dr Hind Satti, who runs an MDR-programme in Lesotho said that as many as 30% of her cohort of over 200 DR-TB cases are former miners. In most cases, the clinic only learned about a case by happenstance after a community health worker would hear of someone in the community who had recently come from another country and had been on TB treatment involving injections (which are only used in second-line treatment regimens). Some of these had subsequently gone on to infect their family members. In fact, some of the cohort of DR-TB patients are wives or children of men who died before being discovered.
“There are many cases where patients are taken just to the border, without a referral letter or anyone in the country being informed of the patient’s condition,” she said. “If he’s lucky he’ll get a 30 days supply of treatment and that’s all, it ends there. But if you have diagnosed an MDR-TB patient, you should refer this patient with dignity. As a doctor, I would at least write a referral letter so that they have a chance of getting into care.”
HIV is also an issue for the miners, though some were unaware.
“All of these tested HIV-positive, we don’t have a single one who is negative,” said Dr Satti. Some had apparently been tested for HIV without their knowledge or consent, as their patient-held records note their CD4 cell count (which would only be assessed in HIV-positive patients). “Nor was ART provided to these patients, and they’d come home with CD4 cells of 4 or 5.”
ARASA’s consultation on mines
In May this year, ARASA held a consultation on the issue of mines, TB and migrant labour with Partners in Health andvarious health and labour officials from South Africa and Lesotho, including people who have been involved in the management of these patients who have been sent back home.
Several things came out of the meeting, according to Akugizibwe. “The first problem is that there aren’t any mechanisms to ensure continuity of treatment. This is how a patient can get dropped off at the border without a referral letter. The ministers of health in these countries really need to take proactive steps to put those systems in place, and that the mines or the clinics near the mines are held accountable for when patients get dumped at the border without a proper referral. In addition, there are broader problems around the legislative framework, and issues of compensation for these patients.”
Dr Satti told aidsmap.com that her team have been in contact with the mining companies and that they are trying work out mechanisms for referral — so that if a patient is sent back home, they are alerted and can quickly enrol the person into care. And despite the ethical issue of using the worker and then dumping them when they are ill, in the case of Lesotho, it may be the best and most humane option for care given that Lesotho has the model programme for community based MDR-TB treatment.
However, miners dropped off at the borders of other countries are probably not as lucky.
“It’s important to remember that these cases are being created. This is an actual situation that is being created by poor infection control practices, by the lack of access to care for migrants, for minors and prisoners for example,” said Amon. “Ensuring that there is universal access to care in all these settings will be a way of reducing the creation of new MDR-TB patients.”
And what of Mr Sibanda?
It’s not clear what has become of Mr Sibanda. The activists have tried to put him into contact with MSF in Zimbabwe in the hope that they could help him access treatment. More recently the International Organisation for Migration has been trying to facilitate access to care for Mr. Sibanda, but the reality is that there are few places to access MDR-TB treatment in Zimbabwe.