Hepatitis A: A story from a Syrian refugee camp clinic
A little ways north of Thessaloniki, Greece, 175 refugees live in a converted textile factory. In early January, the pipes burst under the strain of the coldest winter Greece has seen since the 1960s, leaving the camp without running water. Fuses blew regularly as the outdated electrical system from the old factory struggled to power the one space heater allocated per family, causing many to endure the biting cold without a heating source.
In the past two years, 1.3 million refugees and migrants have traveled to Greece. Of these, 173,450 refugees arrived by sea in 2016, and over 400 people died trying. There are many refugee camps in the region, some of which are little more than a collection of outdoor tents. The number of camps in Northern Greece is anywhere between 26 and 48, depending on which month the count was done and which authority reported the data. These camps housed about 60,000 people in 2015. After the Macedonian border was closed in March 2016, more refugees were left stranded in Greece, unable to continue on to other parts of Europe.
At most camps, a medical aid organization visits 1-2 times per week, leaving refugees with chronic diseases without access to a regular primary care provider. Each time a healthcare organization visits, an individual patient may be seen by a different provider who knows little, if any, medical history about the patient. This leads to decisions being made without reviewing previous treatment plans or medical progress over time, which decreases quality of care. Access to healthcare is impacted by the disjointed system of government and non-governmental agencies charged with managing various aspects of the refugee crisis and the Greek government’s starting position from an economic crisis of its own. Before the influx of refugees, the Greek government was already struggling to provide basic medical care to its own citizens.
This camp is unique both because it was awarded a 6 out of 5 on the standard of living scale for refugee camps during the Fall 2016 Greek Ministry of Migration survey, and because the most medically vulnerable refugees are preferentially sent here. The camp is capable of accommodating refugees with complex medical needs because of its superior housing and access to regular primary care with after-hours emergency medical response provided by the on-site clinic. The camp was created as a model to demonstrate the benefits of delivering all supportive services under one roof with an emphasis on collaborating with the residents to give them a say in their own welfare. Camp leadership works to foster a sense of ownership of the community, and a sense of home. It is privately funded, unlike most camps in Greece, which are run by the military.
At most camps, individuals get each meal handed out in a plastic container like airplane food, so there is no choice or control over what your children eat. Here, families are given a choice in what groceries make up their weekly allotment. The camp has a communal kitchen, which empowers residents to cook for their own families. Another difference is the organized shop where residents can use points to buy clothes, toys, or extra toiletries. Unfortunately, even given the private funding and superior housing, the community still endures conditions that can lead to poor public health.
The living conditions in refugee camps are a perfect storm for the transmission of infectious diseases. There is overcrowding, so it is easier for infections to spread through skin contact, the air, or objects such as bedding. Close to 100 people often use one bathroom, which increases the risk of fecal to oral transmission. At this particular camp, everyone uses one kitchen, which is vulnerable to contamination. Running water is only intermittent, and hot water fails even more frequently, so handwashing, which is the most important weapon against disease transmission, is often difficult, if not impossible.
The refugees at our camp are disproportionately children and individuals with chronic health conditions. Of the residents at the beginning of 2017, 12 percent were under age 5 and 61 percent were under age 18. Of the residents age 18 or over, only 38 percent were men. Two families were from Iraq, while the rest were from Syria. Many families were forced to flee their homes during the war in Syria years before as neighborhoods were bombed and parents worried that their sons were destined to join the fighting if they remained. These families all had their previously normal lives disrupted by violence and traumatic experiences. The stress individuals had endured was a significant factor to the fragility of the physical health of many in our camp.
The psychological stress of being unable to work and not knowing what the future holds also takes a toll. Some people feel that it is pointless to learn Greek or another language in the classes offered, because there is no telling what language may be spoken where they are eventually granted asylum. Many of the men stay up until four in the morning smoking and playing cards in a private room, reclusive from the rest of the community. Some are hesitant to put work into building up the community or making friendships, knowing they could leave any day with only 12 hours’ notice. The camp leadership has tried to foster community ownership among the residents, but the effort to encourage participation in running the camp and maintaining the building has been a struggle. On the other hand, some residents seize every opportunity provided enthusiastically; take every class offered, participate in every group, and take on leadership roles in the community. There are some resilient individuals who have managed to thrive, despite all the challenges of being a refugee.
The night of December 7, our team received a call about a medical emergency. The pediatrician on-call drove to the clinic to examine a two-year-old boy presenting with nausea, anorexia, emesis, lower abdominal pain, and yellow stool. The boy’s father reported that all of these symptoms began earlier that day. The doctor noted that the boy’s liver was enlarged on percussion, his eyes were slightly yellow, and when she tested his urine, the bilirubin was elevated. She expressed her concern to the father and explained that blood tests were needed, but at midnight, the lab was closed, so they needed to come back to the clinic in the morning so the boy’s blood could be drawn and driven to the nearby lab for testing. The doctor gave the boy a shot of zofran to help with the nausea and vomiting, but emphasized that this was not a cure, because the cause of the symptoms needed to be found, which would require more tests.
This encounter took place using a teenage resident interpreter. While there are confidentiality concerns when using residents of the same community for medical interpretation, the resident interpreters were essential for initiating the medical emergency system outside of clinic hours. All residents knew to go to their room in case of emergency because they were our point of contact. We trained the interpreters to take vital signs and complete a basic assessment so they could provide us with important information over the phone before we reached the clinic.
They took on this responsibility with gratitude and seized the opportunity to help their community. They volunteered in the clinic every day, eager to learn about medical care and gain professional experience. Patient care across a language barrier is always a challenge and despite the training given to these young residents, with the father’s anxiety, he was unable to listen and internalize the instructions the doctor gave. The next morning, the pediatrician went to the family’s room and knocked on the door, but there was no answer. The family was gone.
The following day, the family presented to the clinic at noon to have the boy’s blood drawn. When the doctor examined the boy’s arm for a vein, she discovered evidence that an IV had recently been removed. The father explained that after they were seen in our clinic over night, he took the boy to the clinic at a nearby camp because he was worried. He said he was familiar with the clinic there because his wife’s twin sister lives there. The doctor at the nearby camp’s clinic recommended that the boy be seen at a hospital so labs could be completed, so the man left the two-year-old boy’s younger brother, an infant on daily medications for a seizure disorder, in the care of his aunt at the nearby camp, then took a taxi to a hospital with the two-year-old. The boy’s uncle, the husband of his mother’s twin sister, was already admitted in the same hospital with the same symptoms as the two-year-old.
When we asked about the results of the blood tests, the father said that he didn’t know the results because he was worried and left the hospital. There are two Arabic interpreters provided for hospitals in the region by Médecins Sans Frontières (MSF). If one of these interpreters does not happen to be at the same hospital when an Arabic speaker needs care, there is no interpretation service available. Even if a refugee is fortunate enough to be in the same location as an interpreter, only a doctor is allowed to call for an interpreter; a hospitalized patient does not have the authority to ask for an interpreter so they can communicate with their nurse or doctor. Apparently there had been further miscommunication, so the man was back in our camp but had no more information about the boy’s condition. Meanwhile, the two-year-old’s mother was with the boy in the hospital while the younger son was still with his aunt in the other refugee camp.
The doctor called the hospital with the help of a Greek-speaking volunteer, but the lab refused to release the results to the doctor, even though she explained that she was the primary care provider managing the patient’s care at the clinic where the family lives. The hospital staff said the doctor would have to come to the hospital in person with the boy’s father to get the test results. We had limited cars, and limited volunteers to staff the clinic so the rest of the residents could continue to access medical care. Despite these limitations, we were able to allocate resources so the same pediatrician who treated the boy would be able to drive the father to the hospital that afternoon to get the test results. When we told the father that this would be possible, I expected that he would be relieved, but instead he refused to go.
After a long discussion, the father explained that he didn’t want to go to the hospital because he wanted to deliver formula for his younger son first. The doctor then agreed to drive him to the other camp, wait for him while he delivered the formula, then drive him to the hospital. This discussion, aided by a professional interpreter, literally took hours and involved lots of yelling and even tears. This young man was exhausted and overwhelmed by trying to provide for his wife and sons in this foreign country where he didn’t speak the language and the healthcare services his son needed were so confusing and disjointed. He simply wanted to do what was best for his family, but he felt disempowered by his status as a refugee and being forced to navigate the resources available to get the help his family needed.
That night, the pediatrician reported back that the doctor at the hospital said that hepatitis A had been confirmed, on the basis of elevated liver enzymes, elevated bilirubin, in combination with the boy’s clinical presentation. Hepatitis A can cause elevated liver enzymes in the blood, but other forms of hepatitis could produce the same effect. Typically, the diagnosis would be confirmed with a test that looks for IgM antibodies in the blood that form when someone is acutely ill with hepatitis A. However, we were told this test is not available in Greece.
Hepatitis A is a viral infection of the liver which can cause a self-limited illness with loss of appetite, abdominal pain, nausea, vomiting, diarrhea, fever, malaise, and jaundice. Hepatitis A is transmitted through the fecal-oral route, primarily through contaminated water or food, or by direct contact with an infected individual. The virus is highly contagious and can spread quickly in conditions of overcrowding combined with poor sanitation.
The incubation period of hepatitis A is two to four weeks. Acute liver failure is a rare but possible complication, which is most common in the elderly and those with pre-existing liver disease. Many young people who become infected with hepatitis A have no symptoms or only a mild illness, yet they are still able to spread the virus because it will be shed in their feces. Preventing transmission was a serious logistical challenge in a camp which frequently lost access to running water, and even more frequently lacked heated running water, which is an understandable disincentive to handwashing when it is literally freezing. The virus can survive cleaning with soap, temperatures up to 140˚F, and desiccation. There is no treatment for hepatitis A, so patients are given supportive care.
Prior to the refugee crisis, the Greek healthcare system was barely adequate for the local population. A population which did not, for the most part, live in overcrowded conditions with poor sanitation, inconsistent utilities, and lack of protection from the elements. Greek citizens can expect to wait six months or more for an appointment with a specialist, and the technologies available are not up to Western standards. For example, I was told it would cost 70 euros for an antibody titer, which would have to be mailed to France to reach the nearest laboratory with the needed equipment. When I worked in a U.S. clinic that saw low income and uninsured patients, I routinely ordered antibody titers when an adult needed proof of immunity to vaccine-preventable diseases before starting school or a new job. In Greece, this would only be accessible for those wealthy enough to not depend on the national healthcare system. The Greek economic crisis set the stage for even more challenges when the healthcare system was required to expand to provide care for refugees.
Our clinic was providing primary care for the residents of the camp, so we needed to make sure that the agencies responsible for tracking and controlling outbreaks of infectious diseases were notified in a timely manner with the details needed to respond to the situation. In a functioning system, primary care providers who directly treat patients report to a public health department if an infectious disease is diagnosed that could pose a threat to the patient’s community. A public health department can look at the big picture of an outbreak and act as a liaison between the many providers scattered throughout a region who may have treated a patient with the same disease. This coordination between primary care and public health is critical to track and control an outbreak at the early stages before it spreads.
Rather than reporting to a local public health department, for refugee camps in Greece, there are many agencies and levels of officials involved. The responsibility to take charge was not clearly owned by any one of these agencies, which made it easy to pass blame for work that was not done. I reported the case of hepatitis A to the Department of Epidemiological Surveillance and Intervention (KEELPNO), the agency responsible for surveillance and control of infectious diseases in Greece, the Ministry of Health’s Medical Coordinator on Vaccinations for Refugees and Immigrants, and the Ministry of Migration. I provided the information by emailing a clinical summary of the situation, by calling, and by submitting the Ministry of Health’s infectious disease surveillance form, which I completed daily to document the patients seen by our clinic in every 24 hour period, including details of any reportable conditions seen by our medical team.
While the Syrian government did an excellent job vaccinating the population prior to the war, with coverage rates for pediatric vaccines around 90 percent, any child under age six could be assumed to be unvaccinated because public health services ceased when the war began. Hepatitis A is common in the developing world, but rare in wealthier countries. In countries with poor sanitation, people develop immunity due to early childhood exposure. Most Syrian refugees were middle-class or upper middle-class, so similar to most American communities, the whole camp would be at risk of becoming infected with hepatitis A if exposed. Hepatitis A is not on the Syrian vaccination schedule, so even a fully vaccinated adult would not be immune.
On December 11, four days after the two-year-old became ill, a resident hurried into the clinic to tell us that the boy’s father needed help. He was too ill to leave his room, but he needed a doctor. The young man had abdominal pain, loss of appetite, nausea, dizziness, malaise, and a headache. On exam, he was febrile, his blood pressure was elevated, his abdomen was tender, and the edge of his liver was palpable although he was not jaundiced. Like the rest of the community, the man had not been vaccinated against hepatitis A previously. He was informed that he likely had the same viral infection as his son. This made him angry, so he left the camp again sometime in the next 12 hours when he was well enough to walk again. With the boy, his father, and his uncle all ill with the same symptoms, there were three cases, which, by definition, is an outbreak.
We were informed that the boy was discharged from the hospital on December 12 and traveled directly to the nearby camp where the rest of the family was. From there, they were to take a bus to the Regional Asylum Office because the family had an upcoming interview as part of the asylum process. The family of four still had belongings in a room at our camp, although they expressed a desire to move to the nearby camp instead.
Following my initial report, I sent a request to the Ministry of Health, KEELPNO, and UNHCR for 177 hepatitis A vaccines to administer as post-exposure prophylaxis, given the overcrowding, poor sanitation, and high risk of infection due to lack of previous immunization against hepatitis A for nearly all individuals residing in the building. In my email, I pointed out that the vaccines needed to be administered prior to December 22 if following the two-week window recommended by the CDC. According to guidelines, we needed to achieve at least 70% vaccination coverage of the target community. I called to make sure the email was received and to ask about next steps.
In a call with the Health Officer in charge of hepatitis A on December 14, she stated that vaccines were very difficult to obtain. When I requested vaccines for all 177 residents, given that everyone living in the building and sharing the same bathroom and kitchen had likely been exposed, she said that would not be possible. I had compiled a list of the residents who were the highest risk of medical complications if they were to contract hepatitis A based on their age and medical history. I then asked for 89 vaccines to cover these high-risk residents. Again, she said this was not possible. I became increasingly frustrated and asked how many vaccines would actually be possible. She said maybe three.
Many of the Syrians who got to Greece early on were from wealthy backgrounds and some felt that it was below them and their children to clean a communal bathroom or other common areas. A resident had created a rotating chore schedule, yet there were certain families that everyone knew never did their part. A couple weeks prior to the initial hepatitis A case, the women of the community went on strike due to this conflict between families over cleaning. The women who cleaned figured that the women who did not clean would eventually get so sick of living in filth and squalor that they would see the importance of the work and do their part. Two weeks passed and the protest had not resulted in action by the other women. The stairwells were spotted with human feces and the adjoining walls were decorated by a smattering of tiny brown hand prints at toddler-level. Half-eaten pieces of fruit were stuck in banisters and other crevices from where mothers had given a child a piece of fruit as they went out to play, but they stashed it somewhere instead of finishing it. At a leadership meeting that week, a volunteer explained that he had found that it was necessary to actually watch as the men’s bathroom was cleaned because every time the men were left to do it on their own, it didn’t get done. The volunteer reported that the toilets were clogged and overflowing, and one of the men’s stalls had five piles of feces on the ground around the toilet. Open defecation in the playground area and in a tent for activities outside had also been a problem recently.
Given the fecal-oral transmission route of hepatitis A, I emphasized to camp leadership that we needed to get everyone involved in cleaning, and every resident needed to understand the importance of improving sanitation in order to maintain their health. I explained that all areas where the boy was living and playing while ill needed to be cleaned with a dilute bleach solution, which was inexpensive and readily available. I also outlined a plan for how we could best quarantine individuals who were infected or known to be exposed, given the crowded conditions and limited infrastructure. I planned to have the American volunteers help clean the family’s room and remove any toys that couldn’t be bleached in garbage bags because everything the toddler played with was likely heavily contaminated. Because Hepatitis A is not on the Greek vaccination schedule, assisting with cleaning the toddler’s room would have been more of a health risk for the Greek volunteers.
We organized a community meeting to inform the residents about the situation, and as a call to action, to begin cleaning all common areas of the camp with dilute bleach. I stood at the front of one of the classrooms, while the lead volunteer who was fluent in Arabic served as interpreter for the meeting. I provided few specifics, but said that a resident had been confirmed to have hepatitis A, and I explained the basics of what it is. I explained that each resident needed to do their part to clean in order to protect their children. As I talked about the importance of good sanitation to mitigate the risk of disease transmission, a man began yelling aggressively from the back of the room.
I looked toward the commotion to see that it was the man with hepatitis A yelling at me. I was shocked that he was back at the camp, and had been allowed to re-enter by security without notifying the clinic, but he was there. He yelled about how we were all bad doctors and how we were trying to kill his son. Most of the people near the front of the room seemed to be trying to ignore him. One woman near the front asked me whether the man and his family should be kept separate from the rest of the community to avoid spreading the infection to others. I agreed, but didn’t want to rile the man up any more given the situation. While many of the men left as the man with hepatitis A was escorted out, I felt that my message did not entirely fall on deaf ears. I had a group of fifteen or so people, mostly women and girls, who were poised and ready to get to work cleaning. It was a start. The process was not as efficient as it could have been, and volunteers had to do a portion of the work, but over the next couple days all common areas of the building where the ill toddler had played were cleaned with a dilute bleach solution.
After the community meeting about hepatitis A, the Arabic-speaking lead volunteer and I tried to explain to the father that the instructions given to his family to avoid spending time in the common areas were to protect the health of the community, they were not meant as a punishment. The man was adamant that he and his family would not follow any recommendations from the clinic. He said that they were going to go wherever they wanted, whenever they wanted; end of story. After a discussion with the camp director, the man was given bus tickets and told to go be with his family. Given his refusal to follow recommendations to reduce the risk of exposing more residents to hepatitis A, he and his family were not welcome back for two weeks. Hepatitis A is most contagious early in the illness, so the risk of transmission still exists but is lower after a couple weeks. The father accepted the bus tickets and left angrily. It was unclear why he had returned to our camp in the first place when the rest of his family was at the other camp.
I had not heard anything from the clinic at the nearby camp, so I called to ask who manages that clinic. KEELPNO assured me on the phone that my report had been received and passed along, but I was concerned that I had not been contacted. I found out that the Greek branch of Médecins Du Monde (MDM) was managing the clinic, and I knew the doctor in charge from UNHCR meetings. When I called her she was surprised that the two-year-old and his family had been seen at our clinic, because they were also being seen at her clinic. She looked up their registration numbers while I was on the phone with her and confirmed that not only were all four family members receiving medical care at the nearby camp, they were also receiving food, non-food items, legal aid, and had been given private housing to live in. They were double registered at both camps.
As a young father, his motivation was completely understandable. He did what any father would have done for his children in this situation. He tried to get them all the resources available to help them thrive. This information provided the rationale for the father’s behavior that seemed strange previously; it explains why he kept coming back to our camp without the rest of his family. The amount of time the family was spending in the other camp, combined with the information from the doctor running the other camp’s clinic confirmed that the hepatitis A outbreak originated at the other camp, so the cases at our camp could be presumed to originate from the family residing in both locations.
As the December 22 deadline for administering hepatitis A vaccines as post-exposure prophylaxis to prevent a subsequent hepatitis A outbreak approached, I continued to reach out to the various agencies responsible for public health functions in refugee camps. I sent more emails and even reached out to organizations in other countries, but even if someone abroad was willing to send the vaccines, the regulations involved in transporting them would likely be an insurmountable barrier. I spoke with a local doctor who helped me get flu vaccines in the Fall, and she said it would be even harder to get vaccines now because of a new law that all vaccines must change hands within a Greek hospital. For example, if MSF wanted to give me vaccines for our residents, we would have to arrange to meet inside a Greek hospital, which would involve the government in the transaction.
As predicted based on the incubation period of hepatitis A, more cases started occurring January 11. The first boy who came to the clinic had been previously diagnosed with congenital adrenal hyperplasia and was on oral steroids to treat this condition. He was immunocompromised and high risk for getting any infection, so it is not surprising that he contracted hepatitis A. He had to be hospitalized and was seriously ill. This infection was preventable. A boy could have died because he was exposed to a disease he had never been offered a vaccination against and had no immunity to, yet he could not get needed care after a known exposure to prevent the illness from occurring.
This happened in arguably the camp with the most resources in Greece. The clinic had a budget that allowed us to purchase anything our residents needed. We were adequately staffed with well-trained American healthcare providers. I am educated in public health and did everything I could to document and report the situation to local authorities. The political barriers involved in trying to provide healthcare to refugees in Greece were insurmountable. No amount of money or education could overcome them.
When medical volunteers and camp leadership learned about the boy with congenital adrenal hyperplasia being hospitalized for hepatitis A, three Greek citizens who work to improve the lives of residents at the camp every day took action. They each went to their doctor as a patient and got a vaccine for their own use. Even though as Greeks they were also at risk of contracting hepatitis A because they had not been vaccinated previously, they each gave their vaccines to members of the boy’s family, knowing that the family was high risk due to their close contact with the ill child. This selfless act demonstrates the goodwill of many Greeks to help the refugees in their country. They were willing to put their own health at risk to protect the health of a family of refugees.
One day in early January, a government official from what was analogous to a regional department of public health came to the clinic to meet with me unannounced. I was excited when she said she wanted to discuss vaccinations so I showed her to my office, which was actually a storage closet. The woman couldn’t have been much more than four feet tall, and due to the unusually high ceilings with shelves from floor to ceiling packed with medical supplies, I felt like I towered over her in the confined space without windows. I had emailed her many times with information about the hepatitis A situation at the camp and requests for vaccines. She said she did not think she had received any information or requests from me.
She asked how many people had been exposed to hepatitis A, and asked for details of the initial case in the two-year-old. I asked if she had read the report I sent, and she said she had not. I pulled it up on my computer and invited her to sit in my chair to read through it, because it had all the information she was asking about. She continued asking questions which would have been answered by emails I sent, and she insisted that she did not have the information about the vaccines requested. There was a long back and forth, with me clarifying what we needed and why, and her giving vague answers without making any commitments or indicating what her department was actually responsible for. She clearly did not actually want to talk about the work that needed to be done, it seemed her visit was more of a formality. I offered to exchange emails with her to make sure she had all the information. As I reached for a pen and paper, she said, “I don’t need it. I got your emails.” And then she left.
KEELPNO eventually came to the camp with 89 hepatitis A vaccines on January 20, but they arrived long after the window for post-exposure prophylaxis following the first case on December 7. They mandated that a pediatrician administer each vaccine. This requirement did not make any sense because a nurse can administer a vaccine, and we had emergency room physicians in the clinic who could have treated an adverse reaction to the vaccine in the unlikely event that one was to occur. That particular week we did not have a pediatrician, and an emergency room physician who regularly treats children wasn’t good enough. Thankfully, MDM Greece was kind enough to send a pediatrician to our clinic for the day to meet this requirement. I gave the KEELPNO representatives a copy of the list of 89 residents at high risk of complications, which was the request that prompted the vaccines to be brought to our clinic. They told me that they were only given authorization to allow the vaccination of children, so the 15 elderly adults and individuals with liver disease would not be allowed to receive a vaccine. This was frustrating from a public health perspective because many of the children offered vaccines were not as high risk as other individuals, and allocating the limited vaccines for use on the highest risk individuals would be better for the health of the community. In the end, hepatitis A vaccines were administered to 89 children between the ages of 18 months and 15 years.
Many aspects of the refugee crisis are often oversimplified by the media, but each refugee is a normal person, and people are multidimensional. There are fathers just trying to do what’s best for their family. There are resilient individuals learning new languages and contributing to their communities, thriving in spite of their circumstances. There are altruistic Greeks who spend every day working to improve the lives of the refugees living among them. There are also government officials who may be less than helpful at times. Providing primary care to refugees in Greece is complex, but not just because of the medical needs of the individuals. The bigger challenge lies in working within the socially-constructed systems to get things done.
This anecdote demonstrates one example of a systemic problem. In addition to hepatitis A vaccines, it is challenging to get any vaccines for refugees. The living conditions in refugee camps increase the risk of vaccine-preventable disease outbreaks. There isn’t an easy way to reach all refugees with a mass vaccination campaign, but maybe there is hope in raising awareness of the impact access to preventive healthcare can have on individual children and entire communities. Perhaps if the people who hold the authority to create or remove political barriers understood how much power they have to create positive change, they might think about using that power for good.