The numbers are difficult to fathom. According to a report by the United Nations High Commissioner for Refugees (UNHCR), in 2015, over 60 million people worldwide were forcibly displaced as a result of conflict, persecution, generalized violence, or human rights violations.1 Over 9 million of those displaced people are Syrian refugees fleeing sectarian warfare and atrocities committed by the Islamic State, also known as ISIS and ISIL, in their country. The conflict has caused so much human suffering since it began in 2011, the United Nations (UN) has declared the situation in Syria the worst humanitarian crisis of the 21st century.
Today, much of that humanitarian crisis is spilling into Syria’s neighboring countries, as Syrians turn to Turkey, with the highest number of registered Syrians (2.2 million), Lebanon (1.3 million), and Jordan (628,800) seeking asylum,1 overwhelming the resources of those countries, especially their public health-care resources for noncommunicable diseases like cancer.
Lack of Funding and Data
A study published in The Lancet Oncology investigating the impact of refugees with cancer on host countries has found that a lack of sufficient funding (from either the host country or refugee aid organizations like the UNHCR) for expensive medical treatment is resulting in many patients with advanced-stage disease being turned away when they seek care.2
We have had to reduce our programs and make very difficult decisions because the amount of funding has been significantly reduced.— Paul Spiegel, MD
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Without cancer surveillance programs in place and data from electronic cancer registries to keep exact tallies of the number of refugees with cancer, it is impossible to know how many refugees lodged in countries like Turkey and Lebanon need treatment and do not receive it. Nevertheless, data from the study, which looked at refugees from conflicts in Iraq and Syria living in Jordan and Syria from 2009 to 2012, provide some disturbing clues.
According to the study, of the 511 applications for cancer treatment—most commonly for breast cancer—in Jordan between 2010 and 2012 reviewed by the UNHCR’s Exceptional Care Committee (ECC), which decides whether to fund expensive treatments, only 246 were approved. The main reason for denial, said the report, “was poor prognosis.”Error loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait Widget.cshtml)
“These are absolutely brutal, horrific decisions the ECC has to make, and we are very careful not to put doctors treating these patients in the position of making these decisions,” said Paul Spiegel, MD, Deputy Director of the Division of Programme Support and Management of the UNHCR and lead author of The Lancet Oncology study.
Making Agonizing Choices
In the past, the framework for dealing with humanitarian emergencies was built on the experiences of refugees living in camps in low-income, less developed countries where communicable, maternal, nutritional, and newborn diseases are prevalent and could be remedied by straightforward interventions such as antibiotics, vaccinations, and nutritional supplements. Noncommunicable diseases like cancer, which often require more complicated and expensive ongoing care, are more prevalent in low- and middle-income countries like Syria, where smoking and obesity rates are high, and are mostly beyond the financial resources of relief organizations.
Already experiencing shortfalls in its funding for humanitarian emergencies since the war in Syria began, the UNHCR has seen even greater drop-offs in donations as the war has dragged on—the UN’s humanitarian appeal for Lebanon alone is facing an 83% deficit in funding3— necessitating deeper slashes to its assistance programs, including for health care. Amnesty International has called the international community’s response to the Syrian refugee crisis “shameful.”3
“We have had to reduce our programs and make very difficult decisions because the amount of funding has been significantly reduced,” said Dr. Spiegel. “Therefore, we have to prioritize primary health care and particularly emergency obstetrical care over diseases requiring more expensive procedures such as coronary bypass surgery, renal dialysis, and treatments for cancer.”
Refugees with serious medical conditions that require care costing more than the $1,000 to $2,000 allocated in the UNHCR’s budget for primary health-care services are referred to the ECC, whose members include a UNHCR medical doctor and local doctors with varying specialties. The ECC decides whether to approve or reject treatment, based on several criteria, including the necessity of the suggested treatment, feasibility of the treatment plan, disease prognosis, cost of care, and eligibility as a registered refugee. Because refugees often present with later-stage disease due to interruptions in their treatment in their country of origin, delays in seeking health care because of unfamiliarity with the health-care system in a host country, financial limitations, lack of medical records, or fear of persecution, they are often denied care.
With limitations on the amount of money available to relief organizations to provide care for refugees with chronic diseases, the responsibility of treating them has shifted to host countries like Lebanon, where more Syrian refugees are housed per capita than any other country, with 209 refugees per 1,000 inhabitants.1 The steady influx of refugees over the past 5 years—more than 2,500 refugees are registered by UNHCR staff every day—has taxed the country’s ability to provide such basic public services as education, electricity, water, and sanitation, and, of course, health care, for both its own population as well as the refugees.
Because the health-care system in Lebanon is highly privatized and fragmented, Lebanese patients without private health insurance must apply for care through the Ministry of Public Health and seek treatment through public hospitals. For refugees who arrive with little money and few prospects for finding work, paying for their own medical care is impossible. If their treatment is not subsidized by the UNHCR, a nongovernmental organization, or the host country, patients with cancer will likely die from their disease.Error loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait Widget.cshtml)
War and constant conflict not only cause the destruction of homes and people’s lives, the creation of refugees, and misery at all levels, they also hide the true suffering of cancer patients.— Nagi S. El Saghir, MD, FACP
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“According to information from the Director of the Ministry of Public Health, Lebanon has requested $50 million from the UNHCR to provide care for refugees with cancer, but we have only received $15 million because the UN agencies say they don’t have the funding,” said Nagi S. El Saghir, MD, FACP, Professor of Clinical Medicine and Director of the Breast Center of Excellence at the NK Basile Cancer Institute at the American University of Beirut Medical Center in Lebanon and Past Chair of ASCO’s International Affairs Committee. “The Rafik Hariri University Hospital has a deficit of $6 million for the treatment of Syrian refugees and is under a lot of stress. It cannot buy equipment, it cannot pay employees, and it cannot buy medications because it is overwhelmed with the number of refugee cancer patients who are accepted there for treatment as emergency cases. The Lebanese Ministry of Public Health asks that the UNHCR increase its funding and expand coverage to include refugee patients with a diagnosis of cancer.”
This strain on resources in Lebanon’s hospitals is further exacerbated by the country’s refusal to allow the establishment of refugee field hospitals by humanitarian organizations, according to a report by Amnesty International.3
Difficulty of Providing Care
Prior to the current conflict in Syria, the country had a thriving health-care system that rivaled those found in other middle-income countries. However, since the war began in 2011, hundreds of hospitals and clinics have been decimated and nearly 700 medical personnel have been killed in bombings in their hospitals or clinics, shot, or executed.4 Many others have fled the country, making it impossible for Syrians to get adequate cancer treatment.
“I recently saw a patient with breast cancer from Damascus, Syria, who had been treated there in 2010 with neoadjuvant chemotherapy, followed by surgery, radiation, and adjuvant tamoxifen hormonal therapy,” said Dr. El Saghir. “In 2015, her cancer recurred and she was prescribed oral chemotherapy with capecitabine, but she was unable to have follow-up care because her medical oncologist had left the country due to the war. She developed severe left shoulder pain due to brachial plexus malignant infiltration that requires radiation therapy, but because the radiation therapy unit is in a war zone, there are few medical staff members remaining, and the equipment is often out of order, she was unable to get the treatment she needed and had to be transported by her family to Beirut for care.”
The NK Basile Cancer Institute and the Children’s Cancer Center of Lebanon, both affiliates of the American University of Beirut Medical Center, are two of the few private hospitals providing care for children and adult refugees with cancer. However, funding through organizations such as the American Lebanese Syrian Associated Charities (ALSAC), which raises funds for St. Jude Children’s Research Hospital, and private donations are woefully inadequate to provide care for the many patients who need it.
“In 2013, St. Jude Children’s Research Hospital donated $2 million to the Children’s Cancer Center of Lebanon, and we used that and other donated money to treat 69 children with leukemia, lymphoma, brain tumors, and osteosarcoma,” said Dr. El Saghir. “Treatment for every child with cancer costs between $100,000 and $200,000, and we were able to treat 50 Syrian children, 8 Palestinians, and 11 Iraqis. In 2015, we received $3.5 million from St. Jude and have enrolled 25 patients, 21 Syrians, and 4 Palestinians into the program, but you can see it is a very small number. More donations are needed in order for us to continue providing care for cancer patients.”
Achieving the goal of improving care for refugees with life-threatening diseases like cancer will take multiple approaches, including bolstering the health-care systems of host countries through standardizing operating procedures and innovative financing plans; balancing primary and emergency care with expensive referral care; developing cancer registries; and finding sustainable funding sources.
“There is no way the United Nations or any humanitarian actor can take on and try to improve the whole health-care system of a country,” said Dr. Spiegel. “We are working very closely with the World Bank Group to explore how we can improve economic growth in the host countries so that the national populations as well as the refugees can share in economic progress, but that will take a long time to become fully realized.”
Improving communication through mobile and Internet technologies to inform health-care providers and patients about how, where, and when to best seek continuation of care in countries providing asylum; developing electronic medical records and cancer registries that span across national boundaries; and providing access to basic cancer screening tests such as Pap smear and mammography could all help to increase the level of oncology care refugees receive and improve their outcomes, according to Dr. Spiegel.
Raising awareness on the severity of the toll—physical, mental, and economic—that war and disease take could also provide a greater sense of urgency to seek solutions to the problem.
“War and constant conflict not only cause the destruction of homes and people’s lives, the creation of refugees, and misery at all levels, they also hide the true suffering of cancer patients,” said Dr. El Saghir. “Refugees confronting diseases like cancer deserve more attention from the media, especially in medical journals and magazines, to document the needless devastation and hardship war brings. We must find solutions to resolve this crisis, end the atrocities, and learn to reason and compromise when we have disagreements to avoid the human disasters we see every day, including ongoing killings, injuries, the displacement of whole populations, and acts of terrorism.” ■
Disclosure: Drs. Spiegel and El Saghir reported no potential conflicts of interest.
1. UNHCR Mid-Year Trends 2015. Available at unhcr.org/56701b969.html. Accessed April 7, 2016.
3. Amnesty International: Agonizing Choices: Syrian Refugees in Need of Health Care in Lebanon. May 21, 2014. Available at www.amnesty.org. Accessed April 7, 2016.