Linda* was already sick when she arrived in Johannesburg from Zimbabwe, but she did not know her HIV status. After months of sleeping rough in a park her health deteriorated further and she finally plucked up the courage to go for an HIV test at an inner-city clinic.
"I had to wait for two weeks to get the results and I did not get counselling," Linda recalled. "The nurse who gave me the results told me, 'Here are your results; you are HIV positive, you can go and die. You do not have papers, we can not help you.'"
Johannesburg, South Africa's largest and wealthiest city, has been attracting hopeful new residents since gold was discovered here more than a century ago. People from all over the African continent, many fleeing conflict and poverty, continue to flock to the City of Gold in search of a better life. They are often disappointed.
"When I came here, I was hoping to get a job and take care of my children, especially this one who is sick of the deadly disease [HIV]," said Linda, who came to Johannesburg five years ago. "I was thinking, let me go to Johannesburg because it is a place of gold. But it is not easy to get that gold; even if you dig and dig you will not get it."
For undocumented migrants like Linda, Johannesburg can be a hostile place. Inner city neighbourhoods like Hillbrow, where about half the residents are non-South Africans, are already bursting at the seams and battling high levels of poverty and crime. Newcomers face suspicious locals, exploitative work situations - if they find work at all - and limited access to essential public services.
Right to healthcare rarely recongised
South Africa's constitution states that "everyone" has the right to access healthcare, but in reality there are limits for people like Linda who can't produce a South African ID book. Public health facilities in South Africa are obliged to provide emergency care to anyone who needs it and illegal immigrants can usually access HIV tests and even some basic treatment of opportunistic infections at no cost. But when it comes to antiretroviral therapy (ART), the only proven way to prolong the life of someone living with HIV, they are routinely turned away.
Research conducted last year by the Forced Migration Studies Programme at the University of Witwatersrand on migrants' access to ART in Johannesburg found that public health facilities were referring HIV-positive foreign nationals to a handful of nongovernmental organisations (NGOs) that provide treatment, creating a "dual-health care system".
In September 2007, the Department of Health issued a revenue directive stating that refugees and asylum seekers - with or without documentation - were eligible for free ART. But the researchers found that the directive had not filtered down to the clerks, receptionists and nurses who act as the gatekeepers of public health services.
"Frontline staff ... didn't seem to have knowledge of the memo; they would indicate that the policy at their institution was that they had to turn people away. A lot of staff found this frustrating," said Jo Veary, one of the researchers.
Linda eventually found her way to a shelter where she heard about a support group for HIV-positive migrants run by Mthwakazi Arts and Culture, a local NGO that mainly assists Zimbabwean migrants. Mthwakazi referred her to Nazareth House, a Catholic mission in the inner-city neighbourhood of Yeoville that, with funding from the US President's Emergency Fund for AIDS Relief (PEPFAR), provides ART to anyone who needs it, regardless of their legal status. Of about 800 patients getting treatment at Nazareth House, the majority are non-South Africans.
Migrants flooding health system?
Linda's circuitous route to treatment took time, which not all migrants living with AIDS have. More than 1,000 homeless people, most of them Zimbabwean immigrants, bed down on the floor of the Central Methodist Church in Johannesburg's inner city every night. "Many of them are HIV positive, some of them are very weak. I must tell you we've lost a large number of people to AIDS," said Paul Verryn, bishop of the church.
According to Verryn, HIV-positive migrants' experiences of trying to access care vary considerably depending on where they go. Many described state-run Johannesburg Hospital as one of the facilities most likely to turn away patients without documents or to charge them excessive fees.
The hospital's CEO, Sagie Pillay, told IRIN/PlusNews that non-South African citizens without documentation were not turned away, but that they had to pay for non-emergency care. "Fifteen percent of our patients are foreign and the numbers are growing so we have to be careful. Health systems all over Africa are crumbling so if we advertise the fact we can provide care, the whole of Africa is going to be here," he said.
Based on the research she did, Veary said the notion that foreign nationals seeking treatment were flooding the healthcare system was a myth. Most of the migrants interviewed for the study only discovered they were HIV-positive after arriving in the country.
The idea that migrants' unstable living situations make them a "flight risk" for starting life-long ART was another myth, according to the study findings. "Many have actually been in South Africa for a long time, they're well-established and they want to get well," Veary said. "We found adherence among non-citizens was about the same as among citizens."
Zimbabweans make up the largest number of undocumented migrants in Johannesburg. The country's economic meltdown has resulted in shortages of basic commodites, the highest inflation rate in the world, 80 percent unemployment as well as a crumbling health system which has only been able to dispense antiretroviral (ARV) drugs to about 91,000 of the 321,000 people who need them, according to the World Health Organisation.
But of the thousands of Zimbabweans who duck fences, cross rivers and hide in the back of trucks to reach Johannesburg every month, Verryn believes few make the journey because they're looking for better health services. "Many of them are here because they are threatened politically. Some come because they just can't make it, particularly in Zimbabwe, financially."
Long wait for documentation
Wilson Moyo* came to Johannesburg in 2006, leaving behind a comfortable life as a white-collar worker in Zimbabwe after his political activities made him feel his life was in danger. He decided to test for HIV soon after arriving, not because he was sick, he said, but because he wanted to be "in a position to protect myself".
After learning he was HIV positive, he was referred to Hillbrow Clinic where a clerk asked to see his ID. "When I said I didn't have any ID, they said, 'go and bring it'. I couldn't explain further because I knew I wouldn't get anywhere," he said. "After that I was disappointed, because I'd thought about it and found that this was not the end of the road, there was still life after HIV. The best thing was to fight on and get treatment and continue living a normal life, but the problem was how to get the proper documentation to get treatment."
According to South African law, refugees and asylum-seekers have the same rights to access free health care as citizens. Although they still sometimes experience difficulties exercising those rights, documented asylum seekers are generally able to access ART through public health facilities. The problem is obtaining that documentation.
South Africa's Department of Home Affairs has a backlog of about 50,000 asylum-seeker applications. Everyday, thousands of people queue outside the department's Refugee Reception Office in Pretoria, 50 kilometres north of Johannesburg. In an effort to keep their place in the queue, many are there for several days and nights with no access to running water, toilets or shelter.
"I once slept there for three days, having nothing to eat and without having washed," said Wilson. "The last day, when I was number eight in the queue, I was pulled out by these guys who were getting bribes from people. They said I should give them R100 (US$12) to be in that queue, which I didn't have."
A year and a half after testing positive, Wilson had yet to be examined by a doctor to determine his eligibility for ARV treatment. Still homeless and jobless, he was trying to raise enough money through piece work to return to the Refugee Reception Office in Pretoria.
"I think maybe they could relax the rules for people with our disease," he said. "If they could make it easier for us to access these documents, then it would make our lives more bearable."
Demand for government action
In March 2008, a number of organisations from the AIDS and legal sectors made a joint submission to South Africa's National AIDS Council (SANAC), highlighting the vulnerability of migrants who fail to access HIV-related information and services.
"We have found that our protective legal framework is not being applied uniformly," the submission stated. "Public hospitals, clinics and other institutions appear to be unilaterally creating policies which deny refugees access to health care services."
The submission urged SANAC to launch a campaign to educate health care workers about the rights of migrants and the reasons why they seek refuge in South Africa. It also asked for an investigation into the conditions outside Refugee Reception Offices and at facilities where undocumented migrants are detained before being deported. It cited a police raid on the Central Methodist Church in January in which approximately 500 Zimbabweans were arrested. According to the submission, a number of HIV-positive detainees were not given sufficient food and water and went without medication or treatment.
According to Fatima Hassan, an attorney with the AIDS Law Project, one of the organisations that made the submission, the health department has yet to acknowledge receiving it.
In response to questions from IRIN/PlusNews about the rights of migrants to access HIV/AIDS services, head of the health department's HIV/AIDS unit, Dr Nomunde Xundu wrote that South Africa's national strategic HIV/AIDS plan "is a programme for the prevention, treatment and care of South Africans, including people who are in the country legally".
Hassan was perplexed by the response, which she said contradicted both the constitution and the department's own directives. "[The health department] hasn't put any contingency plan in place," she said. "They know large numbers of people are coming from Zimbabwe because there are no ARVs there, but they haven't given hospitals the budget to provide [them with] ARVs."
The ALP has also made a submission opposing a proposed amendment to South Africa's 1998 Refugee Act that would remove the right of refugees to access public health services.