Sadly, like many Americans, until I came face-to-face with hepatitis B, I had no idea of the global implications. Over the years, raising HBV awareness has been a quiet mission. In 2002 and 2003 I was fortunate to travel to China, and help present train-the-trainer programs that were to be used in Chinese orphanages, presented to Chinese foster families, and used as training sessions for rural doctors. The training programs were successful, and well received, but of course they were only a small contribution in a country where HBV infection is endemic. In fact one in ten Chinese are chronically infected with hepatitis B. Nearly one half-million die per year from HBV related liver cancer, or one Chinese person every 60 seconds. As an American, I was aware of the discrimination faced by those living with HBV in the U. S., but I had no idea how widespread discrimination was throughout China. For some naïve reason, I thought HBV infection would be better accepted in a country where so many are living with HBV. I was very wrong.
Training participants listened with earnest as we reviewed infection control techniques and modes of transmission. All were interested in the details. Perhaps what was more sobering were the interactions in between and following these training sessions. I found myself quietly met by a number of tentative women with downcast eyes. They waited in the bathrooms, and stepped out of tiny alley-ways as we walked back to our hotel. They quickly surveyed the area, their eyes darting back and forth, before they asked their questions about HBV treatment, and outcomes. The despair was was palpable.
We were invited to visit a local city orphanage. The rooms were somewhat sterile, but cheerful and the care takers were very good with the children. However, when we met with the staff, we learned of their concern of HBV infection among the children under their care. They were concerned about transmission. However, they continued to treat infant illnesses with injections and IV drugs, rather than an alternate, oral medication. An orphanage is often a world unto it’s own, yet children with HBV are often segregated from the other children. Children diagnosed with HBV outside of the orphanage environment may also be refused entry into school, although this practice may vary with the province, the city, or even the official in charge. That doesn’t leave a child identified with HBV much of a future.
Perhaps one of the most sobering experiences was meeting with HBV-listserve members at a local tea house. We were seated upstairs, away from other guests, which is not uncommon when foreigners are present, but it was clear this was more for their privacy. They scanned the room and were careful not to speak when the server entered the room. This was the first time they had met in person, and it was clear their hearts were heavy with the burden of living with HBV. Throughout the evening, no names were used, and all members referred to one another by their screen names. Most felt very isolated with their illness and were desperate for information. Many were shunned by family and friends, were humiliated and forced to eat separately, or carry their own bowl and chopsticks. They lived alone with the knowledge of their infection, as widespread discrimination loses jobs and ruins families. There were a number of treatment questions. Many were interested to know how long they needed to take the antiviral drugs, and whether or not they could stop for a while – if they were feeling better. We told them that stopping and re-starting treatment was not good, and they should speak with their doctor. We didn’t realize that few were under the care of a doctor for their HBV.
Later, while traveling in Shanghai, we visited a lavish pharmacy. All oral, prescription medications were available in China without being prescribed by a doctor. Only injectable drugs required a physician’s prescription. As a result, it was likely my listserve friends were self-medicating without the advice of a liver specialist. The drugs were likely cost prohibitive, so the need to start and stop antiviral treatment was more a function of expense. It was apparent that most were not being treated and monitored by a specialist. The prospect was sad, all the way around.
Please join us as Thursday’s blog concludes “A Personal Reflection on China for World Hepatitis Day….