An interview about World Hepatitis Day with Raquel Peck CEO of World Hepatitis Alliance.
So Raquel, can you tell us a bit about the World Hepatitis Alliance?
The World Hepatitis Alliance (WHA) is a patient-led and patient driven organization with over 250 members in over 83 countries. I say patient driven because that is really key to everything we do. Whether it’s working with governments, members or other key partners to raise awareness of viral hepatitis, patients are at the heart of everything that we are. That is where our success has come from and that is where our future lies as an organization.
You mentioned raising awareness of viral hepatitis. How do you do that?
There’s a lot of moving parts. For example, in 2015 we held the first ever World Hepatitis Summit, which convened more than 500 delegates from 84 countries. The Summit is really about driving better policy-making at the national and international level. We’ve got the 2017 Summit coming up soon in Sao Paulo, Brazil. Raising awareness of viral hepatitis at the policy level is one side of it, then there’s the NOhep movement, which we pioneered last year, aiming to turn hepatitis into a cause everyone, everywhere could embrace. Furthermore, we cannot forget World Hepatitis Day on the 28th of July. The aim is to get the issue of viral hepatitis in front of people and engage them by saying: “Hey, you can help save millions of lives—we need your support!”
Why does World Hepatitis Day matter?
It matters because this is day is the culmination of year-long initiatives, when communities join forced and engage in actions big and small to elevate the profile of hepatitis and effect change. For too many years, viral hepatitis has been neglected at a policy level, which has trickled down to the public, meaning that hepatitis still suffers from very low public awareness. Having an internationally recognized awareness day focused on the disease is so important to us because it gives us a chance to share our story, and the patients’ story, with people who don’t otherwise know anything about it.
So, you think viral hepatitis doesn’t get enough attention right now?
It’s not just about attention. It’s about getting the message out there so that people understand viral hepatitis isn’t just some minor issue affecting a few people in other countries and other places. When you look at some other major diseases, such as HIV/AIDS, malaria and tuberculosis, they have a public profile that makes it possible to include these issues as part of a wider public debate about global health. Hepatitis isn’t there yet, despite the mortality rate being comparable with all of these diseases.
Has World Hepatitis Day been successful—what has it achieved?
Personally, I think it’s been a great success. When you go online on the 28th of July to take a look at what’s happening, there are so many organizations and activists doing really fantastic things to raise the profile of viral hepatitis. For me, I find it inspiring to see all of these different groups working together to advocate for viral hepatitis. Seeing them in action makes me realize that eliminating viral hepatitis by 2030 is absolutely possible. As a global health awareness day, it’s achieved a great deal, primarily international recognition through the World Health Assembly resolution, which set out to provide an opportunity for education and greater understanding of viral hepatitis as a global public health problem, and to stimulate the strengthening of preventive and control measures for this disease in Member States.
You mentioned eliminating viral hepatitis by 2030. What will eliminating hepatitis mean for patients?
For a patient, no longer having a cancer-causing, highly stigmatizing infectious disease can mean so many different things, from not feeling exhausted all the time or not having to pay insurance premiums to living a life free from worry—these things affect patients on a day-to-day basis.
Why do you think so many people are becoming involved with World Hepatitis Day?
Firstly, I think people are realizing how much of an impact hepatitis has on individual lives. The fact that there are over 300 million people, right now, who are living with the disease and are unable to access the treatment that does exist really matters, not only to them and their families, but also for the advocates who really do care about this issue and want to fight for people living with viral hepatitis. Secondly, lots of people are aware that hepatitis doesn’t just affect those living with it, it is connected to wider social and political issues. Stigma and discrimination, at an individual, community and government level, perpetuate the global burden of viral hepatitis. For those living with the illness, they experience stigma and discrimination at an individual and structural level. More often than not, we hear about stories of patients being denied employment, legal and marital rights, and a place for their children in nurseries, etc. People want that to change, and World Hepatitis Day is a chance for them to make their voices heard.
And how can people get involved?
There are so many ways people can get involved this year, whether it’s joining our #ShowYourFace campaign, signing up for the Thunderclap on Twitter, getting a local event going or joining the NOhep movement. The centerpiece for this year is the #ShowYourFace campaign, and the idea behind it is to encourage people to literally show their face to support the elimination of viral hepatitis. What we want to do is help people feel empowered to talk about issues around viral hepatitis without worrying about being the only one in the room doing so. What’s been so inspiring is the number of great photos we’ve already had—people are really coming forward this year and it’s getting us all very excited in the office! If anyone wants to get in involved, the best place to start is to go on the World Hepatitis Day website to take advantage of the guides and materials.
For more information on viral hepatitis, please visit the World Hepatitis Alliance website.