Just two years ago, 194 countries adopted the World Health Organization’s strategy for eliminating viral hepatitis by 2030. With an estimated 71 million people worldwide living with chronic hepatitis C infection, challenges remain around eliminating the disease. Here, experts and advocates in the field share their thoughts on some of the biggest barriers to elimination. Interviews have been edited for length and clarity.
1) Awareness and education
Nitika Pant Pai, M.D., M.P.H, Ph.D., The Research Institute of the McGill University Health Centre: We finally have highly accurate diagnostic tools and the treatments for hepatitis C like many virological diseases. However, we can’t eliminate the disease unless we address the fundamental lack of awareness in lay people about available testing and treatment options, affected communities, and equally and more importantly, amongst stakeholders like primary care providers and front line health care professionals who also need continuous training. We can empower everyone with high quality and actionable information and find innovative ways to make it easier for everyone to understand what’s available in 2018.
Helen Tyrrell, CEO, Hepatitis Australia: In Australia, sharing injecting equipment is the predominant route of infection, therefore services for people who inject drugs are an avenue for engaging with people who may have hepatitis C. However, these services can’t assist us to find the majority of the affected population who either no longer inject drugs or who acquired hepatitis C in other ways. We therefore have to greatly improve community awareness of hepatitis C treatments and also need to provide support to anyone hesitant about treatment.
Marko Korenjak, director and chief, Slovenia HEP: We need awareness activities aimed at the general public to continue to build awareness of the disease. It is first time in history that we have a chance to eliminate hepatitis C. This could be a strong message to reach those who are not aware of hepatitis C at all – that we all care about living healthy, being able to provide for our families and you can do that if you take good care of your body and get tested.
Dr. Pai: The most important barrier is stigma, societal discrimination and related to it all is a lack of social support for people who are most affected by it. Generally, people think hepatitis C means you are injecting drugs. That perception is rooted in prevalence, history, promiscuity, unacceptable behaviors, but it prevents us from moving forward. For it limits a broader understanding of factors like contaminated needles, risk of acquisition, asymptomatic disease, acute hepatitis c (HCV) infection, and transmissibility, role of co-morbidities in impacting diagnosis and treatment. And besides, the ones most affected are not in a position to understand all the intricacies of treatment, i.e., risk of side effects, risk of non-adherence, so despite treatments being highly effective, in real life, due to lack of understanding and timely action, simple things get needlessly complicated, impacting our progress toward elimination.
Tatjana Reic president, European Liver Patients’ Association: When I was 20 years old I was diagnosed with non-A, non-B hepatitis, which is now hepatitis C. I continued my life normally, had absolutely no symptoms, got a degree as a doctor of veterinary medicine and worked for 15 years until I became pregnant. During my pregnancy they told me after testing that I most likely had hepatitis C. In the mid ‘90s I lost my job, not solely because of the diagnosis but it was one of the reasons, and I found myself retired at the age of 39. I experienced a depression that lasted almost 10 years because I was without job, had a small child and was very much worried about having transmitted the disease to my daughter. Then, in addition, it was a situation that sometimes even the parents of my daughter’s friends did not allow their children to come to our house because of my diagnosis. That was painful for me. We can do much more today to educate about what hepatitis C is, how to get tested and how to get treatment.