A Planetary Health Lens for Rare Diseases in Refugee Populations and Innovating Systems Medicine Education

Displaced People and Political Determinants of Health

Throughout history, people have migrated for various reasons such as education, employment, and concerns for personal safety due to wars, social conflict, discrimination, and natural disasters. In June 2018, the United Nations High Commissioner for Refugees (UNHCR) has reported on “a total population of concern of 70.4 million people” that included “20.2 million refugees under UNHCR's mandate, 3.2 million asylum-seekers, 124,100 returned refugees, 39.7 million internally displaced people (IDPs)” (UNHCR, 2018). Among refugees, those fleeing from the Syrian conflict have been among the largest, reaching 6.5 million in the first half of 2018 (UNHCR, 2018).

These are not merely statistics. They have a human face that underscores planetary scale new realities with vast impacts on political determinants of health. Stuckler and Basu (2013) have shown the linkages among political choices made and physical and mental health and death. Health is inherently political, and impacted by constitution and contestation of power: “health is often unevenly distributed, many health determinants are dependent on political action, and health is a critical dimension of human rights” (Bambra et al., 2005). The Ebola outbreak in West Africa and similar incidents further illustrate the ways in which political determinants shape global health.

Rare Diseases in Refugee Populations

Rare diseases are those where a limited number of patients are affected. The definition of rare disease is variable depending on the country: their prevalence must be ≤1:1500 to 1:2500 (Ferreira, 2019). The term is a misnomer in the sense that there are thousands of rare diseases, likely in the range of 5000–10,000, whose collective burden is formidable, affecting about 4%–8% of the population (Ferreira, 2019).

Rare diseases tend to manifest in chronic and progressive clinical phenotypes associated with serious morbidity and mortality. For example, we have recently reported the case of a 38-year-old Syrian refugee man with early-onset extensive atherosclerosis (Ağırbaşlı et al., 2018). Our genetic analyses pointed to a rare case of homozygous familial hypercholesterolemia presenting with multiple large and widely distributed xanthomas. Statins have limited effect in familial hypercholesterolemia and novel therapeutic candidates and clinical trials are necessary. Because refugees are often in movement from transition to host countries, there is a need to think broadly in global clinical trials, for example, using the recently introduced panvigilance concepts and practices (Ağırbaşlı, 2019), to assess the efficacy and safety of new drugs and diagnostics for rare diseases impacting on refugee health.

Although genetic diseases include those that are rare, not all rare diseases have a genetic origin. Also, there are some rare diseases that are infectious in origin as with rare cancers. Signs of a rare disease may be present at birth but can become apparent in adulthood as well. Although effective therapeutics lack for most rare diseases, their diagnosis is important because many patients suffer from the diagnostic odyssey, meaning that establishing the diagnosis of a rare disease can take numerous physician visits and a lengthy time interval between the first symptoms and the accurate diagnosis.

Rare diseases in refugee populations make patients extremely vulnerable and subject to political determinants of health. For example, the diagnostic odyssey in rare diseases can be prolonged further due to language barriers between refugees and their host countries. The past medical records of refugees are often inaccessible, thus creating gaps and challenging their continuity of care. The hopes for treatments might rest in clinical trials for many rare diseases that lack effective remedies. Yet, access to adequate and accurate information on new clinical drug trials and diagnostic tests can be limited for refugees with a rare disease.

The average time spent as a refugee ranges from 10 to 20 years (Mirchandani, 2016). This means refugee health and rare diseases in refugee populations are here to stay in host countries. This commentary is, therefore, a call for devising long-term governance approaches, rather than transient or piecemeal solutions, to address the rare diseases in refugees. In particular, committed responses are important to fund diagnostics, therapeutics, and health services innovation for rare diseases in a context of refugee health.

A Planetary Health Lens for Systems Medicine

New conceptual frames that bring together the biological, social, and political determinants of health are timely, and much needed for innovation in both refugee health and systems medicine education. Rare diseases in refugees are highly relevant to the political determinants of health as highlighted earlier.

Because health is affected by the distribution of money, power, and resources (Kickbusch, 2015), familiarity with political science theory and related analytical skills can usefully inform education on systems medicine and refugee health. This calls for health professionals' expertise in domains that are not previously considered (but ought to be) within the traditional remit of health such as an adequate knowledge on political determinants of health. Yet, political determinants and refugee health do not receive the commensurate attention they deserve in formative training of health professionals and scientists.

Planetary health is a new field that examines the linkages among changes and disruptions in planetary natural systems caused by human activities and attendant public health impacts. Planetary health expands the scope of thinking in global health and systems medicine for integration of the three pillars of health determinants (biological, social, and political) in particular (Schütte et al., 2018). Planetary health also calls for attention to the ways in which human power and values impact natural ecosystems, health, and disease.

Planetary health by its broad and integrative focus across the biological, social, and political determinants is well poised to get to the root causes of health in refugee populations. Planetary health scholarship ought to be considered as an important component of medical, nursing, and other health professionals' training. For this, there has to be adequate emphases placed on retooling of existing physicians, and education of the new generation of health professionals in critical, social, and political science scholarship. This would empower physicians, scientists, and health care staff to see through and beyond the biological determinants of health, for example, social and political determinants such as adequate housing and income, especially in the case of refugees with rare diseases.