Syrian refugees battle cancer in exile

AMMAN - A palpable gloom pervaded the corridors in the Radiology Department, bathed in artificial lighting and peeling hues of baby blue, pink and purple paint. In one room, an emaciated patient curled up in the fetal position.

The largest public hospital in Jordan, Al-Bashir Hospital has a reputation as a facility to be avoided at all costs. But Kiram, a Syrian refugee in her early 30s, had no other options.

She sat quietly in a sunlit room furnished with faux leather armchairs. An IV dug into the back of her right hand, leading straight into a bag of clear and potent liquid hanging from an IV stand. Three chairs away, an older woman sat with her own IV, bags of chemicals, and a large rubbish bin within arm's reach.

Kiram winced deeply as the last drops of chemicals entered her body, then called a nurse to unhook her. Afterward, bright red spots seeped through the bandage wrapped around her hand.

Refugee life is hard enough without having to battle a disease like cancer, yet Kiram is one of the lucky ones.

Every three weeks, she makes the two-and-a-half-hour bus ride - alone - from her home in the Za'atari refugee camp, about 8 miles from the Syrian border, for chemotherapy at Al-Bashir in Amman, Jordan's capital.

Two years ago, Kiram discovered a mass "the size of a chickpea" in her left breast. But "the situation in Syria didn't let me see a doctor," she said. Six months later, she and her husband and their four children left their home in Dera'a, in southern Syria, to come to Jordan.

"After I got to Jordan, I started getting tests," Kiram said in an interview in a breezy, shaded courtyard at Al-Bashir. In August, she found out the mass was cancerous.

Refugee life is hard enough without having to battle a disease like cancer, yet Kiram is one of the lucky ones.

She had a good prognosis, though according to medical records, and the United Nations refugee agency, UNHCR, is paying for the treatment. Only about half of the people in her situation - Syrian refugees with cancer in Jordan - receive that kind of support, according to a recent article in the Lancet Oncology.

Although the UNHCR pays for primary and secondary health care for refugees, coverage of tertiary care, which includes treatment for cancer, has to be approved by the agency's Exceptional Care Committee.

Between 2010 and 2012, the ECC funded about half of the 1,989 cancer cases it received from refugees in Jordan. The maximum amount approved for a single case was $4,626, in 2011. Those whose cases aren't approved have to either scrape together the money or simply forego treatment.

"I am responsible" for my daughter

With a flourish, Ahmad, 29, signed his name beneath a note he had scribbled on the back of a medical record. "I, father of the child Leen, sign below," he read aloud. His voice cracked almost imperceptibly. "Whatever happens to the girl during the operation, I am responsible," be it paralysis, coma, or death, he said.

hmad said he made this pact with himself about four months ago. His three-year-old daughter, Leen, had a brain tumor. Doctors said it needed to be removed in a risky and complex nine-hour operation. Without the operation, she would eventually die. Already Leen spent all her time sleeping. She couldn't walk and would simply fall over instead. She constantly wet herself.

Ahmad and his wife Noor, 19, faced several heart wrenching decisions. The operation would be dangerous, and they also needed to come up with the money to pay for it. Refugees from Hama, Syria, they now live in a town on the southern outskirts of Amman, Jordan. Ahmad works - illegally - at a local store, even though he knows it's risky.

In December, Ahmad and Noor had brought Leen to 'Awn, a medical clinic in downtown Amman run by the local NGO Jordan Health Aid Society (JHAS). Through 'Awn, they could apply to the Exceptional Care Committee for funding for Leen's surgery. "The UNHCR is responsible for us, in Jordan," Ahmad said.

In February, Ahmad and Noor recall, they received a phone call from the UN. "It didn't work out," Ahmad said. Leen's operation could be carried out only by a doctor affiliated with a Royal Medical Services center. But UNHCR told him they "didn't cover" that center. According to an employee at JHAS, however, Leen's file was rejected because of the high cost and poor prognosis.

"UNHCR didn't do anything for us," Ahmad said. Nor did local charities or NGOs, he said, so he borrowed money from five friends to cover the 8,500 JD ($12,000) that the operation cost.

On 16 February, Leen had the operation to remove the mass. "We didn't think Leen would live. She could die during the operation, the doctors said," Ahmad said. "It's a miracle from God."

Leen tottered into the room. Golden heart studs decorated her earlobes, and her short hair sat in thick dark curls. She wore glasses of a bendy lavender plastic, with a strap that flattened down the tops of her ears. She burst into tears at the sight of a notebook and pen and squirmed in fright when her father lifted her hair to reveal scarring at the nape of her neck.

Every month, Ahmad has at least two tasks to follow up on: paying back his friends in monthly installments, and making sure Leen gets an MRI, "in order to be sure that there's nothing in her head again, and to see whether she needs an operation or any other treatments." The MRI costs 300 JD ($425), which Ahmad is also paying out of pocket. He pulled out the latest MRI, taken a few days before. "Al-Hamdullilah (thank God)," he said. "There's nothing now."

Government and aid agencies stretched thin

Refugees flee countries for different reasons, and in Syria, lack of access to medical care is sometimes one of them. In Syria, the health care system is essentially "collapsing," Dr. Adam Khalifa, a Damascus-based UNHCR doctor who co-authored the Lancet article and sits on the ECC, said in a Skype interview.

Local Syrian pharmaceutical companies used to produce about 90 percent of the supply of essential medicines, but 70 percent of those factories have been demolished, Khalifa described, and medicines have become extremely expensive, if they are available at all. Up to 60 percent of public hospitals are damaged or not functioning at all. Half of Syria's medical doctors have left the country.

Syrians "believe they will get treatment...when they leave [Syria for] neighboring countries like Lebanon or Jordan," Khalifa said. "But when they get there, they face challenges."

"We don't have enough money for all of them," Dr. Paul Spiegel, a deputy director at UNHCR, senior fellow for the Harvard Humanitarian initiative, and also co-author of the Lancet article, said by Skype. Of the cases that go before the ECC, "we have very clear categories of how we decide who does or does not get funding, and the whole idea is to help as many people as we can with a limited amount of money."

Prognosis is the most important category, followed by cost and then vulnerability. If a patient has a good prognosis but expensive treatment, giving $100,000 to that patient could be used instead to treat 10 patients for $10,000 "where the prognosis is just as favorable but also cheaper," Spiegel said hypothetically.

In this year's inter-agency Regional Response Plan, or RRP, for the Syrian refugee crisis, the UNHCR requested $4.2 billion, $1.2 billion of which was designated for Jordan, and $120 million of that is for health care. Of the $4.2 billion, 27 percent, or $1.16 billion, had been received as of 3 June.

In Jordan, registered refugees are supposed to be able to access primary and secondary health care at government hospitals and clinics as well as ones supported by UNHCR and run by organizations like JHAS, Caritas, and the International Medical Corps, according to UNHCR's Guide to UNHCR Supported Health Care Services in Jordan.

"We want to prioritise prevention and primary health care," Spiegel said. "It's much more cost effective," he explained, and UNHCR can "save more lives by working on primary health care and emergency care than putting all of [our] money into expensive tertiary care." Tertiary care for a select few "can eat up your budget" and limit funds for the remaining majority of the population.

"In very rare cases, some cases with a good prognosis, we reject them because of the cost of the treatment," Khalifa said, even though "you know that the prognosis is good and that the patient will benefit from the treatment."

Jordan's government-run health care system is functioning, affordable and easy for UNHCR and other aid organizations to work with, said Spiegel. But it's also a small country, with a population of 7.9 million. Nearly 600,000 Syrian refugees - and those are just the official ones - have strained schools, health care facilities, municipal services, and more. Even if the UN covers the costs of refugees' healthcare, Spiegel said, "the infrastructure, the doctors' expertise - all of this - is limited...There's a breaking point."

Institutions are not the only ones with breaking points, however. Kiram is miserable. "I'm sick of my life here," she says, bitter anger, rather than self-pity, coloring her voice. She wished she could rent an apartment in Amman so she wouldn't have to travel five hours every three weeks for treatment. "I came here alone, and I'm going back alone," she said. "I'm tortured."

Elizabeth Whitman is a freelance journalist based in Amman, Jordan, specializing in women's issues and urban Syrian refugees. Her work has been published by The Nation, Al Jazeera English, Boston Review, and others. Follow her @elizabethwhitty"