By Aryeh J. Price
Dr. Farrah Mateen is currently the chair of global health at the American Academy of Neurology, an assistant professor at Harvard Medical School and a practicing neurologist at Massachusetts General Hospital. Dr. Mateen recently published a Policy Review in The Lancet Oncology entitled “Cancer in refugees in Jordan and Syria between 2009 and 2012: challenges and the way forward in humanitarian emergencies”. This timely article provides rare insight into an oft-overlooked side of the refugee crisis in these countries.
In the past, Dr. Mateen has chaired the ethics section of the American Academy of Neurology and served as temporary scientific advisor to the World Health Organization. She trained in medicine at the University of Saskatchewan, medical ethics at Harvard University, International Health at the Johns Hopkins University Bloomberg School of Public Health, and Neurology at the Mayo clinic. Dr. Mateen collaborates internationally in her investigation of neurological disorders and focuses her clinical work on neurological infectious diseases.
One of the challenges to establishing and strengthening cancer registries is recognition of the significance of the crisis and the importance of the data. Have there been any public education and advocacy efforts on cancer’s impact on refugees in low- and middle-income countries?
I am aware of very few cancer-related programmes among refugees. There was one effort on smoking cessation counseling for refugees in Lebanon. Also, there was discussion of a donated mammogram machine to Syria. However, these are unique and I am not aware of other dedicated cancer initiatives for displaced persons in countries of first asylum or in countries with active armed conflict. Many host governments treat refugees with cancer through programs that were designed for the host population.
How does the oncological load in the refugee population compare to the more widely publicized infectious disease burden (the primary concern for refugee camps in sub-Saharan Africa)?
This is difficult to quantify formally. In many countries where armed conflict occurs, there is a lack of baseline data and a paucity of disease registries, even before conflict ensues. What is likely is that the burden of cancer is growing in displacement and refugee situations. There are likely several reasons for this. The global population is aging. Armed conflicts increasing affect middle-income and even high-income countries. In sub-Saharan Africa, almost certainly infectious diseases are still the major consideration; however, many populations are afflicted by both communicable and non-communicable diseases. As we try to point out in our paper, both problems must be addressed in tandem.
Cancer-stricken refugees are a challenging population to follow longitudinally. How can oncologists most effectively care for this unstable demographic? What can the international healthcare community do to support such efforts?
In order for cancer to be combatted, I would argue that the approach must include prevention, screening, diagnosis and intervention. There are many ways to address cancer prevention and screening, and sometimes also diagnosis and intervention, that do not depend on specialist physicians. For example, in our manuscript, we reported the most common form of cancer affecting the refugee population was breast cancer. This can be considered as a population-based problem as well. How can we address cancer from a community health worker, primary care, and allied health perspective, given that we know many refugee situations have few oncologists?
Do any palliative care resources exist in Jordan and Syria to meet the demands of the refugees? Why are curative approaches more common?
Curative approaches should be offered whenever possible, in order to offer the patient the best possible chance of long-term survival. In our paper, we found that “poor prognosis” was a leading reason for not being funded for exceptional care. The international community, when aware of this situation, may be more mobilized to help support refugees with cancer.
In many low-and middle-income countries, establishment of cancer care infrastructure has required substantial political and local governmental support. In the case of cancer care in refugee settings, how do you envision the involvement and collaboration between international organizations such as the UNHCR, local government, and other partners?
All stakeholders are important. It is crucial that all agencies work together with a common plan and jointly agreed-upon operating procedures. The country of displacement is critical in providing care to refugees. In many cases, the country of asylum may already have a high burden of disease to address for its own population. Working to integrate cancer care for refugees in a country that already has a responsibility to care for its own citizens remains a challenge. In such a case, there are organizational and financial barriers. The data in our paper showed how cancer care is possible in complex refugee situations, given the work of the UNHCR, NGOs, the host government, and dedicated citizens. We know cancer care – with the support of all of the agencies you mentioned – is already happening.
What are some of the unique aspects and challenges to developing innovative financing systems and health insurance schemes for refugees; especially for those who need cancer care?
Breaking down conceptions of refugees as suffering from only infectious diseases is the first barrier. Therefore, increasing awareness for cancer is the first step. In some cases, cancer can be prevented through screening programs such as Pap smears and mammograms. Health provision of refugees is increasingly costly. The UN alone has been unable to pay for all refugee cancer care. Donations of private citizens, through crowd sourcing and targeted care programs, will also be key. Another challenge is to ensure that programmes are sustainable, make transparent decisions, and engage local experts.
To what extent is the refugee situation in sub-Saharan Africa generalizable? What are the key distinctions between the experience in sub-Saharan Africa and that of Jordan and Syria?
There are several differences between the two regions and both are large regions which include many million people. Overall, sub-Saharan African populations tend to be younger than populations in the Middle East. Also the health systems of countries may be different between the two, equating to differences in pre-conflict care and diagnosis. The diseases for which people at risk may differ. However, as we have seen, some diseases and vaccination programmes are vitally important no matter where you are, such as the poliomyelitis outbreaks in Syria and Africa. Notably, these outbreaks often don’t start with displaced people at all, but they are at risk like all of us.
Can the growing trend towards electronic medical records be leveraged to help ensure that refugees whose medical history remains outside of Jordan or Syria reach their new practitioners?
Yes, I believe it can be essential. The important issue is to ensure safe, protected health information collection that benefits patients and is shared in ways that will support cancer (and related disease) care across borders.
How can resource-poor countries prepare their chronic disease infrastructure for the prospect of a refugee crisis?
Resource-poor countries will likely create electronic records for their populations in the future, whether or not armed conflict occurs. Many countries of low- and middle-income may be able to improve infrastructure faster than countries of high income because of the former’s ability to “leap frog” onto new technology platforms without transferring from paper records and old ways of doing things.
There may be less regulatory issues in low-income countries and less demand to use old technologies. A great example of this to date is the widespread use of cell phones, particularly in low- and middle-income settings. People in LMIC may in fact take the lead on mobile health, electronic registries, and technological innovation. We can try to expand these efforts to displaced persons as much as possible too.