NEW YORK/TAL ABYAD, SYRIA, MAY 18, 2018—The international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) has begun providing treatment for children in northeast Syria suffering from thalassemia, a life-threatening, chronic blood disorder requiring regular blood transfusions and chelation treatment, for which there is limited care across the country. MSF is calling on other medical actors to also begin supporting treatment in Syria as there is a need for more specialists and medical equipment to care for people with this particular disease.
MSF is treating 400 people with thalassemia at Tal Abyad national hospital, 30-40 percent of whom are internally displaced and live in the camps across northern Syria.
“The number of patients we are treating is limited compared to the high number of those with thalassemia in the region, but we are hoping that this treatment will give some children and their parents comfort and continuity, so they can focus on rebuilding their lives,” said Maartje Hoetjes, MSF medical emergency manager. “We hope that other medical organizations, donors and pharmaceutical companies step in to meet the gap in healthcare provision in Syria to ensure that civilians have adequate medical care and uninterrupted services.”
Thalassemia is an inherited, chronic disease common in the Middle East. It causes the body to produce an abnormal protein in the blood which the immune system rejects, leading to anaemia. Those suffering from thalassemia need regular blood transfusions and chelation therapy to remove excess iron from their blood to prevent organ failure.
After seven years of war, many with this chronic disease have not received the regular treatment or blood transfusions they need to survive. Most thalassemia treatment centers in Syria have closed because they were damaged in the war or lack the specific medical equipment and specialists needed to provide these services.
“Most of our patients are children aged between eight and eighteen,’ said Hoetjes. “They need a blood transfusion every three to four weeks. The frequent blood transfusions can come with complications, as blood contains iron that the body is not able to clear. As a result, people develop iron overload, which damages their internal organs. Without removing the excess iron from the blood, they will eventually die because of heart iron overload.”
Jawhara, a mother of a 10-year-old patient said, “Because of the war, my daughter hasn’t received her treatment or blood transfusions for almost five months. We suffered a lot in Deir ez-Zour city. There weren’t enough units of blood. My daughter’s chronic disease was the main reason we left the city.”
Stories like this are common; the war has forced families to make difficult decisions and take risks to access blood transfusions and treatment for their children.
“Due to the practice of unsafe blood transfusions, a high rate of the children we treat—up to 30 percent—are unfortunately infected with another blood borne disease, most prominently hepatitis C,” Hoetjes said.
Harfeyeh a mother of a nine-year-old patient originally from Raqqa said, “We’ve been displaced seven times. Every time we flee to a safe place, we also try to find areas that have thalassemia treatment centers. Most of these centers are now closed. The closest location to us is Tal Abyad hospital, but it takes almost two and a half hours’ drive to get there.”
In addition to chelation therapy and safe blood transfusions, MSF is also closely monitoring patients in Tal Abyad to identify and treat severe infections early and to provide nutritional supplements, vaccinations, health education, and psychosocial support.
Across northern Syria, MSF runs or directly supports six hospitals and seven health centers. The organization operates six mobile clinic teams and provides distance support to around 25 health facilities countrywide, in areas where teams cannot be permanently present. MSF’s activities in Syria do not include government-controlled areas. MSF’s requests for permission to work in those areas has not resulted in any access. To ensure independence from political pressures, MSF receives no government funding for its work in Syria.