Diabetes and Refugees
Taking a global look at diabetes among refugees
Before Syria's civil war began, Hamad, 67, was a successful farmer in Tafas, a town not far from Syria’s border with Israel. Together with his sons, he farmed 100 acres of fertile tomato fields and olive groves. He took pride in his flock of 100 sheep, and his tomatoes were sold all over Syria. Best of all: His farmhouse was always filled with happy grandchildren.
Then, in 2012, fighting came to the area. First, government jets and helicopters flew over his farm on their way to drop bombs on the nearby city of Daraa. Tanks began rolling through the streets of Tafas on their way to the front lines of the conflict. One day, government soldiers arrived at his farm and shot 27 of his sheep. Two of his seven sons were taken away by secret police officers. To this day, he has no idea if they’re alive or dead.
Hamad and his wife, Sumaiya (their names have been changed to protect relatives still living in Syria), were able to flee to nearby Jordan in 2013, renting an apartment in the capital, Amman. Hamad began feeling ill. “I had a dry throat, I was dizzy all the time, my eyes hurt, I was going to the bathroom all the time,” he says. A doctor at a clinic in Jordan delivered the diagnosis: Hamad had type 2 diabetes.
Not long after, Sumaiya received the same diagnosis.
Hamad and Sumaiya are unwilling members of a large community: refugees with diabetes. Although data is scarce, a recent study in The Lancet Diabetes & Endocrinology identified diabetes as one of the most problematic noncommunicable (non-transmittable) diseases among refugees.
Meanwhile, the number of refugees worldwide is at an all-time high. Almost anywhere there is conflict in the world, there are people fleeing it: from Syria to Venezuela, South Sudan to Myanmar. In 2018, an estimated 70.8 million people around the world had been forced from their homes, the highest number since World War II, according to the latest figures from the United Nations. About 26 million are refugees, people who have fled their home countries due to violence, war, or persecution.
Although refugees arriving in Europe and the United States often dominate the headlines, the reality is that 85 percent of forcibly displaced people live in low- or middle-income countries such as Jordan, Uganda, Pakistan, and Bangladesh, whose health care systems—already overwhelmed and underfunded—struggle to deal with complex, chronic conditions such as diabetes. It can be hard for people with type 1 living in crisis zones or fleeing conflict to access insulin easily, if at all.
The changing nature of refugee crises, meanwhile, makes diabetes an increasing threat. Refugee situations used to be short term, lasting just as long as it took to negotiate the end of a conflict and make the home country safe again. But increasingly, crises are drawn out, says Sylvia Kehlenbrink, MD, who heads up the Non-Communicable Diseases in Conflict program at the Harvard Humanitarian Initiative. The average refugee now spends 26 years away from home.
The lengthier conflicts have caught many aid organizations, more accustomed to parachuting into troubled regions for a few months to provide short-term help, unprepared. Often they’re not equipped with insulin or basic oral medications to help people with diabetes.
Meanwhile, just 3 percent of health aid money around the world goes to treating noncommunicable diseases such as diabetes and cardiovascular disease, even though such illnesses account for 70 percent of deaths worldwide. Diabetes alone kills more people than HIV, malaria, and tuberculosis combined. “Diabetes is a chronic disease—it’s not a priority in war zones,” says Nizar Albache, MD, chairman of the International Diabetes Federation for the Middle East and North Africa, and a Syrian refugee who fled the country in 2012 and now lives and works as an endocrinologist in France. “The priority is taking care of acute disease and trauma. Usually international organizations think about diabetes later on.”
As aid organizations adapt to drawn-out conflicts, they are recognizing that more effective diabetes care for the millions of refugees around the world depends on raising awareness and changing the perceptions of where and how refugees live. Reports on refugee crises often focus on refugee camps, some the size of small cities. For all the difficulties of living in a camp, they offer both aid organizations and residents some advantages, such as centralized health care services.
But the reality for most refugees around the world is very different. Controlling diabetes can be much harder than for local populations.
In 2015, Kehlenbrink spent a month working in sub-Saharan Africa, treating refugees from war in Congo. Over and over again, she saw young men with untreated type 1 diabetes arrive at her clinic deep in the final stages of diabetic ketoacidosis. (This life-threatening condition happens when extreme high blood glucose, along with a severe lack of insulin, results in a breakdown of body fat for energy, causing a buildup of acids, called ketones, in the bloodstream.) Designed to treat emergencies and contain contagious diseases, Kehlenbrink’s clinic had no insulin on hand. “Not a single one of my patients with type 1 survived,” she says. “To me that was stunning. We could treat HIV, malaria, and tuberculosis, but diabetes was very difficult to manage.”
A New Hope
Awareness of diabetes in humanitarian crises is growing, says Kehlenbrink. In August, The Lancet Diabetes & Endocrinology dedicated a series of articles to the topic. And recently Kehlenbrink helped organize a conference in Boston dedicated to improving care for refugees with diabetes around the world.
The World Health Organization has begun preparing supplemental kits for crisis zones that include three months’ worth of insulin and oral medications such as sulfonylureas and metformin. And more organizations are setting up long-term projects to treat diabetes in areas where refugees may face years of life in limbo, waiting for the chance to go home.
One example of the changing approach to diabetes can be found in Irbid, a city of 1.7 million people in northern Jordan. Since 2014, the international aid organization Doctors Without Borders has operated diabetes clinics in Irbid, along with a mobile treatment unit that makes house calls to patients unable to travel.
The Doctors Without Borders diabetes clinic is in a rented basement under the local chamber of commerce, but it could be almost anywhere: There’s a fluorescent-lit waiting room filled with slightly uncomfortable chairs and a reception area with cabinets full of patient records. In the back of the clinic is a pharmacy, where two refrigerators are filled with insulin, and shelves are neatly stacked with medication and blood glucose monitors. Outside, honking cars mix with the Muslim call to prayer as local employees load Accu-Chek glucose monitors into the trunk of a car, preparing to shuttle them from a central warehouse to another clinic across town.
The waiting room is filled with patients: worried-looking parents whose kids were recently diagnosed with type 1 and older patients waiting to talk with the clinic’s staff about managing their type 2. The Doctors Without Borders clinic in Irbid cares for over 2,400 patients with diabetes.
The clinic is a pioneering approach to a big problem: According to Doctors Without Borders estimates, over 12 percent of the Syrian refugees in Jordan—more than 70,000 people—have diabetes. The organization hopes the clinic can make a difference for some of them and provide important lessons for treating refugees in other crisis zones around the world.
Jamil Hamid Qasem, MD, is a grandfatherly Jordanian general practitioner who wears a white vest with the Doctors Without Borders logo over a checked shirt. He’s worked at the clinic for years, long enough to see how the health needs of refugees have changed. “At the beginning, the most important were acute cases—upper respiratory infections, gastrointestinal diseases, sick children,” he says. “Now we try to focus on noncommunicable diseases [NCDs], not just acute needs. Cholera and vaccinations are important, maternity care is important, but NCDs are often forgotten. And they are killers.”
Over the years, Qasem says, doctors and staffers at the clinic have had to adjust to new challenges. Many refugees aren’t allowed to work legally in Jordan, and they have no access to the Jordanian health care system. As a result, they have no way to earn money and can’t afford medication. “These patients are just trying to find the money to live. Making them change their lifestyle is very challenging,” Qasem says. “They have no resources.”
Realizing that distributing insulin and metformin wasn’t making enough of a difference in a population dealing with grief and depression, Doctors Without Borders hired mental health counselors. Now, individual counseling and group therapy sessions are an integral part of the clinic’s approach.
For years, Hamad and Sumaiya struggled to cope, relying on international aid organizations for diabetes medications and insulin and stretching their savings to buy food and pay for an apartment in Jordan. In 2016, they were resettled in the United States by the United Nations refugee agency. Now they live on the north side of Chicago, separated from their children and relatives, most of whom still live in Jordan, Lebanon, or Syria.
They are, in some ways, lucky. They’re two of just 28,000 Syrian refugees allowed to settle in the United States since the conflict in their homeland began, a tiny fraction of the more than 4.5 million Syrians displaced around the world.
Hamad and Sumaiya are grateful for the refuge they found in America, and for the medical treatment they receive in Chicago for their diabetes and eye problems. They take insulin, try to stay active, and have better access to medical care than they did when they lived in Jordan. But like other people with diabetes in the United States, they still struggle to manage; their diabetes hasn’t improved since their arrival in Chicago.
Experts say their story isn’t unusual. In addition to issues like stress and trauma, U.S. refugees with diabetes are vulnerable to the same problems faced by low-income people in the United States. Access to medication, supplies, and medical care are common struggles. After a short resettlement period, typically one to three months, refugees are usually responsible for finding their own health care, either through their employer—refugees are allowed to work in the United States—or by paying for it themselves. In some states, they may have access to Medicaid, or Medicare if they’re over 65.
Nabeel Jabri, MD, a Syrian American endocrinologist, volunteers for the Syrian American Medical Society (SAMS), an organization of Syrian American doctors working to help Syrian refugees displaced by the civil war. For the past few years, he’s volunteered for short trips to Lebanon to treat refugees living in informal camps. Their problems—having to stretch diabetes supplies to save money, for instance—were familiar from Jabri’s work with low-income patients in and around his hometown of Joliet, Illinois. “There are similar issues here, but to a lesser extent,” Jabri says.
Lack of exercise and an abundance of junk food options make diabetes harder to manage, whether refugees settle in Jordan, Germany, or the United States. Refugees resettled in the United States often depend, at first, on private charities for support. As a result, they are often placed in low-income neighborhoods, where rents are cheaper. “Just as it is for other people in low-income areas, healthy food is often hard to find and expensive, and options for their kids to go outside and play are limited,” says Lyn Morland, MSW, a refugee health researcher at McGill University.
And, like Qasem’s refugee patients in Jordan, U.S. refugees struggle with mental health issues that can affect their diabetes management. In a study published in 2016 in the Journal of Community Health, researchers found that refugees in the United States were significantly more likely to develop diabetes than English-speaking U.S. citizens being treated in the same community health center. Refugees in the United States struggle to adjust to a new culture, navigate a health care system in a new language, and cope without the social support networks they may have had before being resettled. That’s on top of the physical and emotional trauma they may have suffered in their home country and during their migrations. “It’s not that surprising there are higher rates of diabetes among refugees,” Morland says.
Hamad and Sumaiya say they’re lonely, with little hope of ever being reunited with their children. Hamad still struggles with tremendous stress and guilt knowing his grandchildren, grandnieces, and grandnephews back in Jordan and Lebanon often go hungry. “I lost my land. I lost my wealth. I lost my life’s work. Two of my sons are missing. There are 27 children under 18 I feel responsible for,” he says. “I feel sick all the time. It’s because of the stress we’ve been through.”
Like diabetes, conflict and crisis seem to be a chronic problem. There is hope, however, that chronic diseases such as diabetes in refugee situations are becoming better understood—and supported.
Term to Know: Refugee
Under U.S. law, a refugee is a person who is unable (or unwilling) to return to his or her home country because of fear of persecution, war, or violence. Refugees are screened and treated for communicable diseases (such as tuberculosis) before they are allowed to resettle in the United States but often have other medical needs, such as diabetes.