Aleksey, communications specialist from the Russian Federation

© Natalia Zamanskaya

Don’t be afraid to be open and honest with your friends and loved ones. Together, we all must fight against the stigma.

Hepatitis action plan strategic direction 3: delivering for equity

In 2000 I decided to get tested for hepatitis at a Médecins Sans Frontières mobile unit. I was an intravenous drug user at the time, so I was not surprised when I received the diagnosis of hepatitis B and hepatitis C. Before receiving these diagnoses, I did not suspect that anything was wrong with my health. To tell you the truth, when I first found out about my diagnosis I felt a sense of belonging to this “selected group of individuals” of drug users. For me it was like an initiation process. At the time, all I knew about the disease was that hepatitis C was called a tender killer because there were no symptoms, yet your liver was slowly dying. For me it felt like my diagnosis was permission to continue using drugs.

In 2006 I stopped using drugs (now I am 10 years clean) and began the state programme for free treatment of hepatitis C. After 48 weeks of treatment, I became free from hepatitis C. Today I still have hepatitis B, and go in for medical check-ups twice a year for monitoring.

The most difficult part of treatment was that injecting my medication made me feel cravings to use intravenous drugs again. The syringes and the act of injecting something into my body just brought back the memories and old habits. The main thing that is important to remember throughout the process is that the treatment is to benefit your own health. Having the right mental attitude is crucial before beginning treatment.

There is certainly a stigma around having hepatitis, and at times it was difficult to cope with. I once told my dentist about my diagnosis before performing surgery, and I remember the fear in her eyes and how she did not even want to do the procedure. When the information about my diagnosis was transferred from my local clinic to the district epidemiologist, she telephoned my parents and told them to get separate dishes and bath towels to avoid contamination with hepatitis. I felt embarrassed. It was 2000 and the times were certainly different then, but one doctor told me that he would rather have HIV than hepatitis C. Despite what society thinks, self-stigmatization also occurs. I think having a sense of self-irony about the whole situation is extremely important. 

My experience with hepatitis has definitely shaped who I am, because now I have dedicated my career to coordinating projects on hepatitis for [a nongovernmental organization (NGO)] called EVA. I am really hoping to use my experience with hepatitis to make a positive impact on the lives of others. My hope is that the general public is aware of routes of transmission of viral hepatitis, and understands that viral diseases are not just diseases of drug addicts and sex workers.

My main suggestions for those recently diagnosed with hepatitis would be not to be afraid to be open and honest with your friends and loved ones. Together, we all must fight against the stigma.