Abd Rahman al-Jedan’s life bears little resemblance to most 20-year-olds. As a young boy in Homs, Syria, he grew slowly and was often ill; by adolescence, he’d begun to lose his eyesight. In 2013, at age 16, he was diagnosed with kidney disease caused by uncontrolled diabetes. As the war in Syria intensified, al-Jedan’s kidneys continued to fail, and before his 18th birthday, he’d gone blind. His doctors informed his family that al-Jedan’s kidney’s had given out completely. From now on, the young man would require dialysis to survive. He began spending three days a week at the hospital, using the days in between to recover. “It is painful, and it makes me very tired,” he said of the procedure, “but that is how I stay alive now.”
Soon after beginning his aggressive treatment, al-Jedan’s father was killed by a mortar blast, and his family fled from Homs to Jordan, joining 5 million other Syrian refugees who have made new lives abroad. In a camp outside Amman, the young man’s desperate condition caught the attention of aid workers who helped his widowed mother connect with medical relief workers. “My son was suffering so much, and I felt helpless” said al-Jedan’s mother, Ibtisam Sayar. “When I heard we would be able to get his dialysis treatment in Amman, I couldn’t believe it. It felt like a miracle.”
Al-Jedan is one of roughly 130 Syrian refugees receiving regular, subsidized dialysis in Jordan, placing him in a small and deeply vulnerable population. Not only does his life depend on the specialized treatment that the aid programs provide, but the availability of such treatment for refugees is erratic at best.
At the beginning of May, funding for the Jordan dialysis program ran out completely, with patients in Lebanon facing a similar threat. Partners from the Syrian American Medical Society, a humanitarian aid group, are scrambling to keep up treatment for their most critical patients, said Majd Isreb, a nephrologist working with the group in Jordan, but some patients have already been cut back to twice a week. As a doctor, Isreb is horrified by the prospect of ending the program. “Even a small interruption in care can mean great suffering or even death for a patient.”
“Even a small interruption in care can mean great suffering or even death for a patient.”
The uncertain future of the dialysis program raises further questions about the prospects for long-term medical interventions among the massive Syrian refugee population. A major crisis is unfolding for long-term, preventative, and chronic disease medical care among Syrian refugees as aid organizations continually overlook these concerns as they struggle to stretch scant resources. The international community has consistently fallen drastically short in funding the humanitarian needs of the 5 million-plus Syrian refugees and patients like al-Jedan — those who require specialized secondary or tertiary care — are seldom a priority.
“Funding has been very hard to maintain since we started. We’ve come close to shutting down or asking workers to go without pay. And it’s been getting even harder and harder to get support,” said Isreb. “In every way, dialysis patients just don’t feel like a priority to most people — they are a small population, and when you look at it in mathematical terms, they are more expensive than most.”
The cost of a dialysis treatment in Jordan is roughly $ 65 per session — not much compared to the $ 1,500 to $ 2,000 it costs in the U.S., said Isreb, but a large sum in the world of refugee humanitarian relief. In Lebanon, where another 218 dialysis patients rely on aid organizations for care, the treatments cost roughly $ 100. Most patients require three treatments per week.
Now, the budget shortfalls are raising the prospect that patients like al-Jedan could be cut off from care entirely.
As the Syrian crisis enters its seventh year, aid workers report that “compassion fatigue” has exacerbated systemic funding shortfalls. Last year, the United Nation’s Regional Refugee and Resilience Plan for Syrians received only half of its necessary funding, meaning many refugees went without necessary support, a U.N. Refugee Agency representative told The Intercept. In 2018, the U.N. Refugee Agency has projected a need of $ 230 million for medical care alone. But as of the first quarter, the program was only 27 percent funded.
Major organizations like the U.N. Refugee Agency focus on primary and emergency medical care and do not fund programs like dialysis, leaving that care to smaller organizations to address patients like al-Jedan. This has led to a “constant state of emergency” for dialysis patients, said Mohammed Sekkarie, a nephrologist working on the refugee dialysis project in Lebanon. “The funding is very unstable. We rely on private donors or smaller organizations and they frequently run out of money or just stop sending funds. Sometimes we’re operating week to week,” he said.
SAMS has been able to find funding for another week’s worth of dialysis in Jordan, although it has had to reduce most of its patients to twice-a-week sessions. “Even missing one treatment can cause serious suffering,” said Isreb. “But we have to find some way to stretch out the resources.” SAMS also managed to get a pledge from Islamic Relief to cover the following week, giving the refugees at least partial coverage until the middle of May. After that, said Isreb, “we really don’t know how we’ll keep up the treatment. We’re trying everything we can to find donors.”
Failure to find consistent funding could be a death sentence for patients like al-Jedan. “Some patients could die within a week if their dialysis is cut off,” said Sekkari. “How do you tell that to a person?” Al-Jedan said he’s unable to think about the possibility: “I can’t ask that question. I can’t. Someone has to help. I have to keep going to treatment. That’s it.” Sayar, his mother, said, “What can we do? I’m a widow, and I have six children. There is nothing I can do for my son except pray and hope.”
Meanwhile, in Lebanon, roughly half of the 218 patients were recently informed that they’d soon be cut off from treatment if additional funding is not found.
“Some of the refugees in Jordan and Lebanon have been there for almost seven years. That’s a long time to go with no preventative or chronic care.”
The funding that does come through from the international community is generally funneled to primary care and emergency response efforts. Such allocations are understandable and even appropriate, said Isreb, but he added that the virtual absence of preventative care and treatment for chronic conditions could lead to greater health costs down the road. “About half of the patients needing dialysis in Jordan today developed their conditions after becoming refugees,” he said. “Many of them had untreated conditions like diabetes that grew worse until their kidneys failed. Because they don’t have access to any kind of screenings or routine care, many are walking around with untreated diseases that could develop into life-threatening conditions later.” In addition to kidney disease, many other chronic conditions are going unaddressed, he added, naming heart disease, cancer, and diabetes among them.
Recent studies have indicated that at least half of refugees in Jordan and Lebanon have at least one noncommunicable or chronic disease. That worries Isreb. “Some of the refugees in Jordan and Lebanon have been there for almost seven years,” he said. “That’s a long time to go with no preventative or chronic care. Yet access to that kind of care isn’t even on the radar for aid organizations or refugees. Even from just a financial perspective, this is a very scary scenario for the future.”
In the meantime, Isreb, Sekkari, and al-Jedan hope for at least a temporary fix for the dialysis program. “The uncertainty is terrible for both the doctors and the patients,” said Sekkari. “And coordination between different medical NGOs, public health organizations, and host countries is often very weak. Moving forward, we should work for a holistic approach to cover primary needs as well as the more specialized patients.”
Isreb said he hopes donors can look past utilitarian arguments to see the value in funding programs like dialysis. “I know they say these treatments are expensive and maybe too expensive to save just one person,” he said. “But each person is a whole world and they have a family around them. So, I say, no, this is not too much to pay for a human life.”