Liver disease is a serious public health issue in Taiwan. In a population of over 23 million, roughly 15%–20% of adults are hepatitis B viral (HBV) carriers, and 2%–5% are infected with hepatitis C virus (HCV) [1]. To address these challenges, Taiwan’s healthcare community has shown a strong commitment to fighting viral hepatitis, improving outcomes for liver cancer, and reducing the nation’s overall burden of liver disease.

In support of these efforts, Taiwan has one of Asia’s most active and successful patient advocacy groups for liver disease. Known as the Gan Ji Hwei (Liver Disease Prevention and Treatment Research Foundation), it helps drive patient awareness and education. It also runs clinics and supports screening and treatment programmes, including in rural areas where many patients lack access to adequate quality care [2].

The Lab Insights team spoke to Professor Yang Pei-Ming, Chief Executive Officer of the Liver Disease Prevention and Treatment Research Foundation, to learn more about the foundation’s work and the importance of clinical lab diagnostics to their mission. Professor Yang is an emeritus professor of Internal Medicine at the National Taiwan University Hospital, and a pioneer in Taiwan’s fight against liver diseases.

What are the key activities and vision of your organisation?

The Liver Disease Prevention and Treatment Research Foundation is a non-governmental organisation that was founded in 1994 by my mentors—Professor Sung and Professor Sheu—two prominent healthcare figures in Taiwan. Its vision and mission are to eliminate liver diseases in the country.

In the past 27 years, the foundation has performed more than 700 free disease screenings, benefitting over 600,000 people—especially those in rural areas. It also has held over 1,000 liver disease awareness sessions for the general population and a toll-free telephone line was set up for patients or family members to discuss any liver disease-related issues. So far, there have been over 300,000 telephone consultations.

The contribution of the foundation in eradicating liver diseases has been recognised by the government of Taiwan, as well as agencies worldwide. The foundation is working towards achieving the WHO goal of eliminating HCV in the region by 2030, and I hope we can reach this goal even earlier—by 2025.

What are the benefits of taking a patient-centric approach to tackling liver diseases?

Nearly 80% of liver cancer cases are associated with chronic HBV or HCV infection, so treating and controlling the disease course can help in its prevention, as well as help with other serious complications. Patient awareness and education are key to managing liver diseases. We want to empower patients to manage their disease using the right knowledge and tools.

In rural areas, whilst patient education is important, access to adequate medical facilities is often lacking and this presents an additional challenge. Being able to contact patients in harder-to-reach areas is an integral part of the mission to eliminate liver diseases.

The Liver Disease Prevention and Treatment Research Foundation has focused on raising awareness and providing patient education through holding various disease awareness sessions. It also aims to improve patient access to screening and treatment, especially for those in more rural areas.

What are the main hurdles faced in reaching patients with liver diseases in rural areas?

Many patients with chronic liver disease are symptomless and therefore unaware they have the disease. This results in a lack of motivation to get screened. In addition, there is a lack of awareness of the consequences and sequelae of chronic hepatitis viral infections or chronic liver diseases. By the time patients start to display symptoms and therefore seek treatment, they may already be in the advanced stages of the disease.

Diagnostic blood tests and ultrasound examinations are the key tools to diagnose liver diseases. Abnormally high serum AST or ALT level may also indicate a need for treatment; therefore, it is important that such diagnostic tests are carried out. Raising awareness and encouraging screening can help to tackle this issue.

How do patient advocacy efforts impact health policies and outcomes in Taiwan?

Since last year, Taiwan’s health authority has provided the opportunity for a HBV and HCV test for people aged 45–79 years, free of charge. This extends to those aged 40-79 for aboriginal people.

Liver cancer had been previously the first leading cause of cancer-related death in Taiwan, but due to dedicated healthcare efforts, the number of affected patients has gradually decreased and become the second leading cause since 2004. The annual incidence rate of liver cancer has now declined from the first before 2005 to the fourth since 2014. On the other hand, liver cirrhosis and chronic liver disease also declined from the sixth leading cause of death to the tenth since 2015 in Taiwan.

How can collaborations with other non-governmental organisations help?

Collaborations with other organisations have allowed us to reach more people and increase awareness of liver diseases through joint efforts to provide education to the population. Mass-screening efforts mean that more patients are identified and treated early before the development of sequelae of chronic liver diseases.

The Liver Disease Prevention and Treatment Research Foundation has collaborated with the Formosa Cancer Foundation, as well as other international liver cancer networks and the WHO. With the Formosa Cancer Foundation we have jointly created educational brochures and handbooks for the foundation to distribute.

What are your future plans to help accelerate the impact of the Liver Disease Prevention and Treatment Foundation?

It is critical to ensure that patients have access to adequate information and medical resources. This will help us to prevent liver disease and its complications from occurring.

For those in low-income families, the government needs to work with medical social workers to make sure that such patients can access appropriate screening and treatment where it is needed. The Department of Education launched a programme at the end of 2020 which aims at educating elementary school students about liver diseases.

Placing emphasis on the importance of undergoing liver ultrasound examinations, at least once a year, for every person in Taiwan aged over 40 years will also be critical, as ultrasound examination is an important diagnostic tool for liver issues such as cirrhosis and liver cancer.

What are some key takeaways that other countries should consider when working to improve their patient advocacy efforts?

• Raise patient awareness—we can do this through patient education programmes to improve knowledge about liver diseases, encourage the population to be screened, and address the stigma associated with it.
• Improve patient access—we need to ensure patients can easily be screened, and treatment is affordable, especially for those in low-income families and rural areas. Patients may be unaware that the Taiwan National Health Insurance reimbursement scheme does already cover nearly all treatment for chronic medical conditions, including liver cases.
• Collaboration with government and non-governmental organisations—through collaborations, challenges can be addressed jointly, and more patients can be reached.

References:

[1] Chen DS, Sung JL. Hepatitis B virus infection and chronic liver diseases in Taiwan. Acta Hepatogastroenterol 1978;25:423-430.

[2] Chen DS, Kuo GC, Sung JL, Lai MY, Sheu JC, Chen PJ, Yang PM, Hsu HM, Chang MH, Chen CJ, et al. Hepatitis C virus infection in an area hyperendemic for hepatitis B and chronic liver disease: the Taiwan experience. J Infect Dis. 1990;162(4):817-22.