Burden of Cancer Among Syrian Refugees in Jordan

The Syrian crisis, which started in 2011, has had a profound impact on the entire region. Jordan, with its limited resources, now has the second highest ratio of refugees to inhabitants in the world (89 to 1,000). The actual number of Syrians in Jordan is hotly contested: more than 630,776 refugees registered in November 2015 compared with 1,265,514 reported by the national census conducted at the same time. Although the numbers are slowly but steadily increasing, the number of patients with cancer who were registered by the Jordan Cancer Registry peaked in 2013 at 510 patients reported and subsequently slumped downward, which coincided with changes in funding as a result of the increasing strains on the Ministry of Health. Older individuals, women, and patients with advanced diseases were less likely to be registered. These findings overlap with data obtained from the authors’ own center registry. Using age- and sex-specific population-based incidence rates, we estimated that 869 Syrians are diagnosed with cancer in Jordan annually. Using diagnosis-specific cost records of the King Hussein Cancer Foundation, we estimated that the cost of their treatments is 15.6 million Jordan dinars (US$22.1 million).


Burden of Cancer Among Syrian Refugees in Jordan
Fatima and her family thought they had overcome the most difficult hardships imaginable after they abandoned their home in Syria and fled to Jordan in 2013 to seek asylum and leave behind the suffering and woes of war. Their family outside Syria were scattered among different countries, and they knew nothing about the fate of the home they left behind. Despite such tribulations, the days ahead concealed a more difficult ordeal, as Fatima's belly began to swell. She had lost appetite and her weight dropped markedly, among other harrowing symptoms. The cause of this newfound distress was later found and diagnosed as ovarian cancer. The diagnosis came as an unbearable shock for Fatima's parents. She was only 12 years old, and they had no financial means to cover her costly treatment. A glimpse of hope appeared when the King Hussein Cancer Center (KHCC) agreed to assist with Fatima's case and allocated donations from the Goodwill Fund to cover her treatment. The doctors reassured the parents that Fatima had a chance for survival, because she was among the lucky Syrian patients with cancer who were treated at KHCC. However, it is disheartening to admit that the same is not the case for many refugee patients with cancer who go untreated because of lack of funding, among other reasons.
The Syrian crisis, which began in 2011, has had a profound effect on the Middle Eastern region. 1 With limited resources, and because the blindsiding nature of the conflict led the entire region to find themselves unprepared for a crisis of such a scale, surrounding countries were faced with an unprecedented set of problems. Despite its struggling economy, scarce water resources, and increasing security threats, Jordan has become host to the second highest number of refugees (89 per 1,000 inhabitants) in the world. The number of refugees in Jordan is contested: Although the United Nations High Commissioner for Refugees (UNHCR) had registered 630,776 Syrians as of November 2015, 2 the Jordan National Census, conducted at the same time, reported 1,265,514 Syrians in the country. The gap between the two numbers is alarming, but the discrepancy could reflect that some Syrians had moved to Jordan before the crisis because of many varied factors, including political asylum, marriage, work, and poverty. In addition, many Syrian refugees who moved to Jordan after the crisis elected to avoid registration through the UNHCR and used relatives in Jordan to provide them with basic needs and financial support.
It is notable that more than half of Syrian refugee households in Jordan reported at least one family member with a noncommunicable disease (NCD) and that a significant minority of these families did not receive any care because of financial reasons. 3 It is important to point out The Syrian crisis, which started in 2011, has had a profound impact on the entire region. Jordan, with its limited resources, now has the second highest ratio of refugees to inhabitants in the world (89 to 1,000). The actual number of Syrians in Jordan is hotly contested: more than 630,776 refugees registered in November 2015 compared with 1,265,514 reported by the national census conducted at the same time. Although the numbers are slowly but steadily increasing, the number of patients with cancer who were registered by the Jordan Cancer Registry peaked in 2013 at 510 patients reported and subsequently slumped downward, which coincided with changes in funding as a result of the increasing strains on the Ministry of Health. Older individuals, women, and patients with advanced diseases were less likely to be registered. These findings overlap with data obtained from the authors' own center registry. Using age-and sex-specific population-based incidence rates, we estimated that 869 Syrians are diagnosed with cancer in Jordan annually. Using diagnosis-specific cost records of the King Hussein Cancer Foundation, we estimated that the cost of their treatments is 15.6 million Jordan dinars (US$22.1 million).

Iyad Sultan
Author affiliations and support information (if applicable) appear at the end of this article. that many refugees suffer from neuropsychiatric disorders and depression, which are considered NCDs. 4,5 Poor access to medications and advanced health care are among the challenges that face refugees with NCDs in Jordan, 6 and, although the public sector contributes significantly to the care of refugees with illness, outof-pocket payments are commonly needed to receive proper care or medications. 7 Traditionally, the focus among refugee populations had been on infectious diseases and malnutrition. Therefore, one problem that went largely unaddressed in the aftermath of the Syrian crisis was that many refugees and displaced people had cancer, which requires extensive resources for treatment, including financial support and medical facilities.
Cancer can be over-represented in refugees, as families with cancer are more likely to migrate out of hostile regions to seek medical care, a pattern which was previously reported during the Iraqi crisis. 8 Conversely, and similar to comparable situations, under-reporting of cancer is also expected, because refugees may have difficulty integrating into the public health systems of their host country. 9 Patients with advanced disease who may need palliative care are more likely to have funding refused. 10 These patients may be over-represented in refugee groups because of late diagnoses and may be missed in national registries because they die without proper diagnoses or treatments.
Using data obtained from the Jordan National Census and age-specific cancer incidence among Syrians approximated by Globocan, 11 we estimated that 869 Syrians in Jordan had cancer (55% women, 7% children younger than age 15 years; Table 1). Data provided by the Jordan Cancer Registry through December 2015 reported 1,553 patients with Syrian nationality during the period of 2011 to 2015. 12 The numbers of Syrian patients with cancer registered in Jordan Cancer Registry increased in the first 2 years and peaked in 2013, when 510 patients were reported (53% women, 5% children). The numbers decreased significantly in 2014 (n = 353) and 2015 (n = 331). In a comparison of the numbers of these last 2 years to those of 2013 (the year with the highest number of registered patients), there were fewer women with cancer (50% v 53%), fewer adult patients (92% v 95%), and fewer patients with late-stage diagnoses (25% v 35%). Conversely, the types of cancer diagnosed were similar through the years; breast cancer, colorectal cancer, lymphomas and leukemia, brain cancer, and lung cancer topped the list.
The difference in patient numbers across the years for which data are available is alarming and implies heavy amounts of under-reporting. The number of Syrian refugees who reside in Jordan has increased markedly since 2013, and the number of Syrian patients with cancer should have increased in parallel, comparable to the increase in the number of registered 2 jgo.org JGO -Journal of Global Oncology  refugee Syrian patients with cancer; however, other nongovernmental and international relief organizations could play an important role in the support of refugees and displaced patients, and the international community is called upon to allocate more financial resources so at to alleviate the aching pain that these already suffering individuals are experiencing.