We at BBVReview want to generate awareness about suffering of patients affected by viral hepatitis. As a part of our plan, we intend to publish patient stories where they tell us about not only their pain, but also about successful treatment and their courage and great achievements as human beings. The story below is about Dee Lee, a hepatitis B carrier who started an awareness and anti-prejudice campaign early in his life. He is now a famous hepatitis elimination campaigner. He is Director of Inno Community Development Organisation and West Pacific Region Board Member of World Hepatitis Alliance. We feel honoured to publish Dee’s story here at BBVReview and thanks him for his contribution.
Nearly three decades ago at the age of two, I contracted Hepatitis B following an unfortunate needle stick injury .
I was aware the difference that this was going to make to my life, the moment it was discovered during my first blood test age 9. Twelve other students in my class of fifty were gathered in a group to do test, but our identities as hep B carriers were protected by the our loving teachers! Up to this point, I had been living in a very happy childhood and ignorance of Hepatitis B.
At the age of eighteen during a health examination for my entrance into the university to study marketing, my health certificate clearly stated that I was a Hepatitis B carrier. Although the doctor who performed the health examination said that I didn’t need any treatment, it heighted my concern and became a burden, meaning that I did whatever I could do to keep my Hepatitis status hidden.
For my peace of mind, I felt that I must learn more about the disease and through my own research I soon started to understand more about hepatitis. However; of a sudden, a moment of vulnerability when I plucked up courage to tell my girlfriend that I was Hep B carrier. She thought deeply for a moment, then burst into tears saying that we were not going to be a happy couple as she too was also a Hep B carrier! There was no way that a couple who were both Hep B positive, could have a healthy baby. This hurt us very much not because of this prediction but due to the affect that being a carrier has on everyday life.
Then a moment of nirvana happened! I have had enough of hiding and being an accomplice to extending my discomfort- I got a job! My work was comforting workers who had been threatened with or have been were sacked due to their positive blood tests. I saw table after table of Hep B positive people who were forced to eat separate tables and who had been dismissed without any compensation.
This is when I said enough and started of an organisation with a hotline to eradicate hepatitis testing as part of a pre-employment screen , a training scheme for medical staff and an outreach project for the support of Hep C high risk groups, which now involves 450 factories and more than 1.5 million people.
We have done a lot to help change the scenario. China now has much greater success with Hep B prevention and control, although we still have more than 90 million Hep B positive people and 15 million Hep C positive poeple, the prevalence has dropped to below one percent in the 5 to 14 age group. The economic and emotional burdens of Hepatitis continue to be under estimated and for some are incalculable.
Ms Wu, whose Hep B carrier status was found during a blood donation activity at the Tianjin Normal University, was forced to live in a isolated domitory so that everyone in the class and department knew that she was not clean and was considered to be dangerous! For some months she was discriminated against and physically and mentally abused by her classmates. She was forced to leave the school and shortly after she sadly committed suicide in her isolated dormitory!
My deputy director’s mother was found to be a carrier following a routine blood test. As a result her husband does not allow her to do the laundry and cooking, she uses separate utensils and only receives traditional chinese medicine to treat her. Her virus load is really low and I have visted her to try to persuade her employer and family to change their attitudes.
I knew I wasn’t fighting hepatitis alone, when I joined the World Hepatitis Alliance. I realised that I could do a lot more when I was elected as the board member in the alliance to represent WPR and today I engage with many talented people who make a difference.
There are many sad things in life but what we have here is hope. I gained some new ideas while talking to different groups during these two days. These include setting up a patient self support network all over China and a West Pacific regional campaign to lobby the policy makers to add hepatitis eradication as a sustainable goal.
To paraphrase Robin Williams-’’No matter what people tell you, words and ideas can change the world’’.
Let’s talk and spread new ideas!!
Authors: Dee Lee
Director of Inno Community Development Organisation and West Pacific Region Board Member of World Hepatitis Alliance.