International NASH Day: COVID-19 Pandemic Offers New Challenges, Inspiration for Liver Health Advocates
Stories@Gilead - June 12, 2020
As COVID-19 began spreading across the world, Global Liver Institute (GLI) founder and CEO Donna Cryer’s first thought was about people with liver diseases. In particular, she was concerned about those living with nonalcoholic steatohepatitis (NASH), an advanced form of nonalcoholic fatty liver disease (NAFLD) that has few treatment options and over time can lead to liver scarring and cancer.
Donna knew that, with clinics cutting hours and hospitals canceling non-emergency procedures, patients could experience challenges accessing testing and care. She feared that this would be particularly true for diseases such as NASH, which is already often underdiagnosed and does not typically require urgent care.
“Pausing care means the disease may be diagnosed and managed at a late stage, which could have a negative impact on health outcomes and people’s quality of life,” she explains. “We want to empower patients to insist that their care continues.”
Donna founded GLI in 2014 after struggling to find resources as a liver transplant recipient. Her experience motivated her to work to help people living with liver diseases navigate healthcare systems. That work has taken on added urgency during the ongoing global health crisis, and patient support organizations such as GLI continue to play a critical role by finding creative new ways to engage with patient communities.
Immediately after stay-at-home orders were broadly issued around the world, GLI began a series of Facebook Live videos for patients, addressing everything from diet to accessing care during the pandemic. The series has been popular, with up to 20,000 people tuning in for a session. Using social media and other virtual tools, GLI has managed to advocate for and reach more people than ever before.
“Half a billion people worldwide have some form of liver disease already – that we know of – and yet we don’t have our celebrities, our galas, our big moments,” Donna says. “Everybody has a liver and could be at risk for liver disease without knowing it. We’re seeking to ensure the awareness of NASH and other liver diseases is commensurate with that reality.”
Donna says coordinating the first International NASH Day in 2018 stemmed from this desire to increase NASH awareness beyond liver disease communities. Held annually on June 12, International NASH Day has previously focused on civic engagement and disease education through both in-person events and online campaigns.
This year, International NASH Day has shifted to an all-virtual event providing spaces for patients, providers and the general public to connect with one another, learn more about the disease and address stigma associated with NASH, such as its correlation to obesity. GLI is co-hosting virtual events today in 25 countries with more than 80 partners.
One such partner is the European Liver Patients’ Association (ELPA). The organization’s President, Marko Korenjak, says the differences in care across Europe are the biggest challenge to creating consistent health protocols. Different countries send people with NASH to different kinds of specialists; in one country, individuals with NASH may be referred to a dietician, while in another, a liver specialist would handle care.
“In the European Union, every country has its own health system, and for people with NASH, where they live can impact the quality of care they receive,” he explains. “Much of our work is focused on trying to mitigate these differences and prevent them from having a major impact on health outcomes.”
ELPA, the biggest liver patient association in Europe with 31 member organizations in 25 countries, engages in NASH programs at the local and regional level. Through this work, ELPA played an important role in the launch of a major study in Europe, LIVERSCREEN, alongside partners from universities, research laboratories and other patient organizations in 12 countries. Over the next five years, the program will screen 30,000 people to test the effectiveness of a noninvasive test that could help with the earlier detection of fibrosis, dangerous scarring of the liver which is caused by NASH.
“We need to show decision-makers that this is a hidden disease waiting to come out. It is estimated that 30% of people worldwide have some kind of fatty liver disease, but are unaware of it,” says Marko. “Collaborative projects such as this can have a major impact on lowering the prevalence of fatty liver disease while highlighting the importance of preventative care.”
Donna agrees that collaboration is the only way to make progress improving health outcomes for people living with NASH.
“It’s very humbling how much work still needs to be done and the opportunity we have to collectively make a difference for millions of people around the world,” she says. “If we weren’t out here doing our work together, it likely would not get done. That’s what keeps us going.”