Hepatitis C: What Stands in the Way of Elimination?
The World Health Organization set a goal of eliminating viral hepatitis by 2030. What are the barriers to achieving this for hepatitis C? Four experts weigh in.
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.
“We can do much more today to educate about what hepatitis C is, how to get tested and how to get treatment.”
3) Gaps in the Care Journey
Tyrrell: The majority of general practitioners (GP) in Australia have not yet prescribed hepatitis C treatment and, in a vast country like Australia, GP prescribing has to become the norm if we are going to achieve elimination by 2030. We still have long way to go before every practice has at least one GP who is experienced in curing people with hepatitis C. We have called on the Australian government to commit additional resources to supporting enhanced community awareness of the hepatitis C cures and to support hepatitis C prescribing in primary care.
Dr. Pai: I’ve observed that in both high- and low-income settings, there’s a trust issue in providers and health care systems. Because people know once they get screened with a test, they need a confirmatory test and oftentimes, it isn’t clear how to navigate the system to get that (when it is not paid for). In tertiary care centers and publicly funded systems, it is easier, but outside of these centers/systems, in low- and middle-income countries, where confirmatory tests are quite expensive and not covered, it is always challenging to pre-empt losses to follow up. Again, we are not thinking about how to make it easy for the patient to navigate care. All front line health care professionals need to be educated about HCV and everyone needs to be on the same page. Besides access to diagnostic tools, drugs and care, we need to be thinking big – we need to figure out a strategy that’s actionable and translatable at the ground level. And that’s a long shot more so for the underfunded health systems that bear the bulk of the undetected disease burden.
4) The Need for National Elimination Strategies
Tyrrell: While Australia has had some phenomenal success to date in treating HCV, the road in front of us is going to be much more difficult. Those who were ready and waiting have already received treatment, the uptake of hepatitis C treatment can’t now just be allowed to trickle through over a long period of time. Having a comprehensive national strategy and resources commensurate with the task will be essential for success. Most recently Hepatitis Australia has been working closely with others to develop the Fourth National Hepatitis C Strategy 2018-2022, which will serve as our roadmap to elimination.
Reic: Now that we have the WHO global strategy and Euro action plan for elimination, we have hard work to do with our national governments to make these realities. We must be much more intentional in working with our local governments, our national governments to show them that elimination is feasible without a big investment. I find micro-elimination is a good way to show to the government that elimination is feasible.
5) Patient Support
Korenjak: When I was diagnosed, I felt like I was thrown into a conversation with somebody who speaks Chinese and I didn’t understand a word. There were no patient community resources for me in my country at the time I decided to get treatment. Through this experience, I decided to write a book for patients and started a patient support organization in Slovenia. We need these strong patient communities and resources, especially in countries where none exist and patients can get no information about the disease. When someone calls me for new information they usually get 95 percent of the same information they got in the clinic, but when a patient tells something to another patient they really appreciate it.
The European Liver Patients’ Association aim is to promote the interests of people with liver disease, highlight the size of the problem and promote awareness and prevention, and to ensure that treatment and care are harmonized across Europe to the highest standards.