How One Liver is helping to stop the progression of chronic liver disease
Published 23 June 2021
Dan tries to find the words to tell the story of the health journey that he’s been on for the past thirty years.
“In the early 90s, during my physical, [the doctors found] that I had hepatitis C,” he says. “At the time there was no real remedy for it, so I didn’t really get rid of it until the last five years. Only after they tried to treat the cirrhosis of the liver, I found out I had liver cancer. It knocked me for a loop.”
Hepatitis C is an infectious disease that causes liver inflammation and can permanently damage the liver. Although curable, many people only learn they are infected much later, as symptoms often don’t appear for years. In some cases, as Dan experienced, unchecked hepatitis C can lead to cirrhosis – liver scarring so severe it prevents the organ from functioning properly and is one of the main risk factors for developing liver cancer.
Despite living with hepatitis C for years and even after a diagnosis of cirrhosis, Dan had no idea his chronic liver disease could lead to cancer. He says that learning the connection and discovering he had another health battle to fight left him ‘sad’ and ‘disappointed’ for a while.
But, as he has progressed through the care pathway, he’s found a new perspective and a light at the end of the tunnel. “You always look forward to seeing the sun come up and taking the next breath,” he muses. “That’s part of the deal, whether you acknowledge it or not.”
Dan’s story is far from unusual. In fact, he is one of millions of people living with a chronic liver disease which puts them at increased risk of liver cancer. Almost one in five of the earth’s population has a type of chronic liver disease, a term which spans conditions such as hepatitis (HBV and HCV), non-alcoholic fatty liver disease (NAFLD)/ non-alcoholic steatohepatitis (NASH) and liver cirrhosis.
Today, these conditions together with liver cancer cause roughly 1 in 30 human deaths.1,2 The number of people living with liver disease has increased from 1.5 billion in 2017 to 1.6 billion in 2019.1,3 This increase – linked to complex causes including alcohol consumption, rising obesity rates and infections such as hepatitis – means that the number of patients progressing to liver cancer is also continuing to increase.
The unique One Liver approach
Complex problems require smart solutions. To address the growing incidence of chronic liver disease, we created an initiative called ‘One Liver’ to increase collaboration across Roche Pharma and Roche Diagnostics, with the critical input from external experts, to pool expertise and address patients’ disease holistically. We believe that by doing this together - with the medical community, patients and healthcare providers - our joint efforts can hopefully prevent liver disease from progressing to liver cancer.
Initiated by Geoffrey Torrance, International Product Manager, and Anila Tahiri, Senior Global Medical Director at Roche, the team took a unique approach to create a diverse team including medical leads, liver experts, research scientists and patient organisations, who all share a passion for reducing the number of people living with liver cancer.
This integration between different expertise means we can really focus on the best outcomes for the liver cancer community
The project has also had a positive reaction from physicians. Peter Galle, Chief Physician at the Department of Gastroenterology and Hepatology at University Hospital Mainz, says: “Liver cancer is the most severe complication of chronic liver disease, which often goes unrecognized for decades. Today we have treatment options for most of these diseases and thus can either prevent this complication or detect it at an early stage when there is a chance of cure. The One Liver approach appreciates the complexity of treating liver disease, and the potential impact of liver cancer, and requires the close interaction of many disciplines. Most importantly, the One Liver approach aims to increase the awareness of liver disease and liver cancer, which eventually will help to reduce the burden of these diseases.”
Collaboration leads to solutions
One Liver works to understand the real-world challenges patients and physicians face in diagnosing and treating chronic liver disease and develop solutions to address them. It sounds simple in theory, but the reality is that there are many complex obstacles to identifying at-risk patients and managing their conditions.
Promoting early diagnosis and best care is complicated by the diverse causes of chronic liver disease globally, which means a one-size-fits-all global approach won’t work. For example, hepatitis is more predominant in Asia, whereas the prevalence of obesity is a common risk-factor in the US.4 This means solutions must be tailored to address the nuances and complexities found locally.
In China, where almost half of all cases of hepatocellular carcinoma (HCC; the primary type of liver cancer) are diagnosed,5-7 the team believes the first step is understanding how liver disease patients are diagnosed, managed and treated from the first moment they step through the doctors’ office door. Working with the Zhuhai People’s Hospital Group and Nanfang Hospital in China’s southern Guangdong province, the team is investigating the entire patient journey to pinpoint the areas where simple changes will make the biggest difference for patients.
Following the One Liver approach on working collaboratively on solutions for liver disease patients, Principal Patient Partnership Director Irmi Gallmeier oversaw the launch of the International Liver Cancer Network (ILCN) alongside Achim Kautz, co-founder of the European Liver Patients Association, and Raquel Peck, former CEO of the World Hepatitis Alliance.
“The very core of the ILCN concept was to build a patient-led network of different groups and people who all have experience in liver cancer. By bringing patient communities and charities, medical associations and clinical experts and other relevant players in health systems together, we believed they would share experiences, develop and share resources and unite in striving for better outcomes for liver cancer patients,” says Irmi. “It’s early days but, so far, that instinct has been right. As this network is openly sharing resources with the entire community, I always call it the ‘Wikipedia of Liver Cancer’,” she explains.
The overarching goal
As much as the One Liver initiative is specific to Roche, it is important that collaboration is encouraged. It’s something Mohamed has seen first-hand through his own work.
“If we could share one thing to encourage others to be truly collaborative and spotlight the patients’ needs, it would be to empower your teams to invest in their beliefs and encourage colleagues to break free of their work focus areas,” Mohamed adds. “One Liver is a great example of how providing the right space and open culture to drive innovation, means any idea can be pushed forward.”
From disease understanding, surveillance and diagnosis, therapeutic treatments to monitoring – a new era of partnership and innovation to better the lives of millions of people around the world is in reach.
My dream is to see our partnerships with patients and clinicians contribute to stopping chronic liver disease.
“I really believe that the way forward is to ensure we all work together: patients, physicians, researchers and business leaders. By inspiring early diagnosis and treatment so that individuals like Dan can get the support they need at every point in their health journey,” Mohamed says.
For Dan, he will never know whether earlier diagnosis or access to increased surveillance might have changed his liver cancer prognosis. Luckily, he is still doing well with his wife by his side.
“I got married last year and my whole attitude about living has really improved,” Dan says. “I'm smiling and feeling better.”
“I might be here a little longer,” he chuckles. “I like that one.”
- Moon AM, Singal AG, Tapper EB. Contemporary epidemiology of chronic liver disease and cirrhosis. Clin Gastroenterol Hepatol. 2020;18(12):2650-2666.
- Asrani SK, et al. Burden of liver diseases in the world. Journal of Hepatology. 2019;70(1):151–171.
- Global Burden of Disease Study. 2019 [Internet; cited 2021 May 19]. Available from: http://ihmeuw.org/5c1s.
- Petrick JL, et al. International trends in hepatocellular carcinoma incidence, 1978–2012. Cancer Epidemiology. 2019;147(2):317-330.
- Llovet J, et al. Hepatocellular carcinoma. Nat Rev Dis Primers. 2016;2:16018.
- World Health Organization. Globocan 2020 – Liver cancer factsheet [Internet; cited 2021 May 19]. Available from: http://gco.iarc.fr/today/data/factsheets/cancers/11-Liver-fact-sheet.pdf.
- World Health Organization. Globocan 2020 – China cancer factsheet [Internet; cited 2021 May 19]. Available from: http://gco.iarc.fr/today/data/factsheets/populations/160-china-fact-sheets.pdf.