One year update from the field: immense challenges and joy
With the US travel ban coming into effect on September 1, 2017, the teams from Hepatitis B Free and Christian Friends of Korea (CFK) faced even greater challenges in their work in the DPRK. Despite the political circumstances, volunteer doctors from the hepatitis program ran clinics for the third time this year in Kaesong and Pyongyang from August 22-26, marking 12 months since the first patients started treatment. At the time of writing, 705 patients were receiving treatment and over 1400 had been screened.
Dr Alice Lee reports on the September trip to the DPRK, reviewing the HOPE hepatitis treatment program. Original article from CFK Newsletter September 2017.
It has now been 12 months since we started our first cohort of patients on therapy for hepatitis B. I recall clearly the emotions of that trip last year, the expectant faces and the overwhelming relief and joy. We now have over 700 patients on treatment, and very sadly, we have lost 15 patients to the disease, some as young as 22. When faced with this brutal reality, the sense of urgency to expand our program becomes quite desperate.
Of course, these are extraordinary times, with uncertainty about this trip right until a few days prior to our departure. The hepatitis team included Heidi, Terry and Stone who readied the patients for our doctors, David, Christine and myself. Heading into the country, we all wondered if any of us were in our right minds, and whether we were doing the right thing. Of course, there was really no need for this as this trip was just like any other. Whether being greeted by the familiar faces at the North Korean embassy in Beijing, or the smiles that transformed the faces of immigration officers in Pyongyang, patients as they recognized the familiar returning team, the sense of business as usual and of welcome that waited for us was even sweeter than usual.
There is now a quiet rhythm to the program, broken by bursts of energy when faced with technical challenges or with moments of happy joy. The clinics now seem to hum along, the smiles across patient’s faces, the contentment of the local physicians now familiar with the program as they finally have empowerment to help their ailing patients. Witnessing the physical, emotional and spiritual change is something hard to describe – many are unrecognisable, a little shy about sharing how they feel, they too find it hard to explain what it is like to not be constantly suffering, to dare to hope, to expect a different ending. At the same time, there is complete acceptance of whatever fate one is given; the calm way a diagnosis of liver cancer is received, or when all we can do is say how sorry we are that we have nothing we can offer.
The delights are real: receiving our second shipment of medicines and seeing it in the store rooms, the smiles of the patients as they came to say hi, that they are feeling better, and the many new patients having heard what we are about tentatively exploring whether they too might trust us, familiar nods from waiting patients passed in the corridors of the hospitals, doctors with a sense of purpose – so many tasks to attend to. Rain and more rain, detours with streets flooded, doctors in their singlets and pants rolled up clearing the debris from the flood, I wondered if there was anything that the staff would not do.
Future direction
Currently, the hepatitis program is providing antiviral therapy for hepatitis B. All patients are screened for hepatitis C, another blood-borne virus that causes liver disease in nearly 100 million people worldwide. So far, around 50 patients have been found to be positive for hepatitis C or co-infected with both hepatitis B and C. Hepatitis C can be cured with 12-24 weeks of treatment. In future, we hope to add hepatitis C treatment into the HOPE program.
