Life wasn’t easy for Deborah Furaha Ilunga. When she left the Democratic Republic of Congo (DRC) to apply for asylum in South Africa, she hoped it would lead to better opportunities to build the life she wanted.
Like most refugees and asylum seekers in Johannesburg, she found it difficult finding work. Settling into densely populated Yeoville, with its thriving migrant communities, Ilunga struggled, surviving on precarious and irregular piece jobs.
At one point, things picked up a bit for her and she started a small restaurant in Yeoville. But it didn’t last long, and she had to resort to asking family members in the DRC for help.
Molie Ndjovu, 27, Ilunga’s niece and the only other family member she had in South Africa, said Ilunga’s money worries weighed heavily on her. “She wasn’t financially stable and she felt like she was becoming a burden on the family. She was always asking for help to pay rent or buy food,” Ndjovu said, sitting on the veranda of the apartment where she rents one of the four rooms.
Ndjovu described her aunt as someone “with a strong personality, a strong character”. Ilunga often kept things to herself, relying on her own strength and her faith in God to help her.
So it came as a shock to Ndjovu when Ilunga told her last year that she had breast cancer. “It’s heartbreaking. She didn’t want to put any of it on us. She just kept it to herself,” Ndjovu said, with tears in her eyes.
But Ndjovu knew her aunt’s health was deteriorating before Ilunga confided in her. “It was in 2019, in November … when I saw her at a funeral … when I noticed she had lost … almost half of her weight. And it was really scary. All of us were trying to ask her, ‘What was going on?’ and she said, ‘No, everything is fine,’” Ndjovu said.
“We knew she was always going through financial trouble and she was not yet stable and we’ve been helping her. We even told her that if there’s something that’s happening with you, let us know, we will support you the way we have always been doing.
“She said she was fine and doing prayers and fasting. I was really concerned. I said to her, ‘Even if you are praying and fasting, you can’t lose like half of your weight.’ It was so scary.”
But by the time Ilunga revealed to her niece that she had breast cancer, it had already progressed. She needed urgent medical treatment. Ilunga had a mammogram at the Charlotte Maxeke Academic Hospital in Johannesburg in March last year, which showed a lesion of about 4cm by 4.2cm.
She was told by the Gauteng Department of Health that she would need to make an upfront payment before her treatment could be started. A request form for approval to treat a “FOREIGN” (this was the department’s emphasis) patient had the amount R120 000 circled next to her condition.
Amendments demand payment first
New regulations recently published by the department amended the healthcare tariffs and fees payable at Gauteng public healthcare facilities. The amendments directly contradict the department’s position and the position of the National Health Act.
Jessica Lawrence, the head of the Johannesburg Law Clinic in the Refugee and Migrant Rights Programme at Lawyers for Human Rights (LHR), described the amendments as “concerning”. She said the National Health Act stipulated that everyone, regardless of their citizenship or immigration status, was entitled to free primary healthcare services.
“While it treats South African citizens and undocumented migrants from [Southern African Development Community] states the same, it treats documented refugees and asylum seekers as private patients, requiring payment of the highest level of fees for provision of all healthcare services at provincial healthcare facilities,” she said.
“Since the enactment of the new regulations, LHR has received several complaints from asylum seekers and refugees who have been denied access to healthcare at public hospitals within Gauteng because they are unable to afford the new tariffs.”
This inability to pay upfront fees has often resulted in their deaths, Lawrence said. She added that the new regulations were “contrary to the Constitution and the National Health Act and seek to exclude refugees and asylum seekers from accessing the healthcare system”.
Under the current provisions prescribed by the Gauteng health department, a person’s immigration status in South Africa determines whether they can access the healthcare system.
“In cases where people cannot afford to make an upfront payment, which can range from R10 000 to R150 000, they may have to face living with a serious illness or even death. Alternatively, they may have to return to their country of origin, which in many cases is not an option, including for asylum seekers and refugees who cannot re-avail themselves to the protection of their country of origin,” she said.
Without access to healthcare
While Ilunga’s condition worsened after more than a year of not being able to access treatment, she finally asked for help. She ended up in the care of Marcelline Sangara, the head nurse of the Jesuit Refugee Services’ home-based care programme.
Sangara, herself a refugee from the DRC, immediately connected with Ilunga. “I would say we became friends,” Mama Sangara, as she’s known by her colleagues and patients, said with a smile.
“I became more connected to Deborah to a point that even my kids know that if I did not go to see Deborah, they will start to tell me, ‘Mama, go and see your patient. Your patient needs you, go.’ She can phone me even at midnight and ask for help,” she said.
Sangara said by the time Ilunga became one of her patients, the cancer had metastasised. All she could do for Ilunga was clean the wound on her breast, give her painkillers and make sure she was eating well.
She was doing everything she could to ensure Ilunga was comfortable, but every time Sangara saw Ilunga she was reminded of the anger she experienced seeing a patient denied treatment as their condition worsened. Sangara has had to see a number of patients decline and eventually die after they were unable to access healthcare in South Africa because of their immigration status.
“You know, I think many people are working in the wrong profession. You know, you cannot call yourself a doctor or a nurse if you can’t put yourself in the situation of your patient. [At the] end of the day, there are some diseases that you know in a normal situation a hospital must cover, if not the hospital, the government,” she said. “I wonder what is going on, really. You can’t treat a human being like this. You can’t treat a person like this. Come on.”
Despite understanding that it’s not always in their hands, Sangara had harsh words for healthcare workers who insisted Ilunga pay upfront to access treatment. “You say you need money and you see that the situation of the patient has deteriorated on a daily basis but you still need money to save the life. That means you better go and be a businessman or do something else than … work in the medical field because really this is not fine at all,” she said.
Gauteng health department spokesperson Kwara Kekana was unable to answer specific questions about Ilunga’s case, saying the hospital was struggling to pull her file. “The department is looking into the matter,” she said.
Ilunga died on 14 April at the age of 46 this year after spending the last few weeks of her life at the Leratong Hospice in the west of Johannesburg. Her niece and Sangara said at the end she seemed to be doing better and picking up some weight.
Ilunga was buried in Pretoria on 24 April. The Jesuit Refugee Services arranged the funeral. Father Patrick Mphepo said they wanted to make sure she “leaves this world with love and dignity”, both of which the Gauteng Department of Health denied her.