Roche report reveals that misconceptions about hepatitis are driving reluctance to test and failure to treat despite rising deaths

Roche commissioned research conducted by GWI across Africa, Asia and Latin America has highlighted key factors affecting the spread and impact of hepatitis B and C.

The new report ‘Decoding the Hepatitis Inaction Bubble’ reveals that stigma, lack of awareness and a reluctance to test are leaving millions undiagnosed, untreated and at risk of severe health complications including liver cancer.

The findings come following the recent publication by the World Health Organization (WHO) of an operational guide outlining priorities to stem the rising mortality associated with hepatitis B and C.¹ While these findings focus on addressing the structural barriers communities face to accessing hepatitis screening and care, the survey reveals that education and awareness are also significant issues to be tackled in parallel.

Although hepatitis has been described by the WHO as one of the most preventable and treatable diseases, hepatitis B and C affect around 354 million people globally,² primarily in low-and middle-income countries. However, only a small fraction have been diagnosed or are receiving treatment; only 13% of people living with hepatitis B have been diagnosed, and less than 3% have received antiviral treatment.³ For hepatitis C, only 36% of cases have been diagnosed, with 20% receiving curative treatment,³ despite the fact that over 90% could be cured with a course of anti-viral medication.⁴  As a result, hepatitis deaths are on the rise, increasing from 1.1 million in 2019 to 1.3 million in 2022, with the majority of these caused by hepatitis B and C.⁵

In the survey, which included 3,318 people aged 16-64, almost half (48%) of respondents reported only a “slight” understanding of the disease.⁶ There were also marked geographic disparities in understanding, with 34% of respondents in Thailand, 25% in South Africa, 23% in Mexico and 20% in Morocco displaying no knowledge of hepatitis.⁶

Across most regions, between 20% and 30% of people said they had no plans to book a hepatitis test. This increased in people living in Morocco and South Africa, with 60% and 52% respectively unlikely to seek testing.⁶

The presumption of good health emerged as the most common barrier to testing, with over half of respondents assuming they are not at risk.⁶ This false sense of security is particularly pronounced among younger individuals, who often perceive the disease as a risk only for older or ‘high-risk’ groups. Financial concerns and logistical challenges, such as difficulty taking time off work, further discourage testing.

Stigma compounds these issues, shaping public perceptions and discouraging at-risk groups from seeking testing or treatment. Hepatitis is often mistakenly perceived as being confined to certain groups or demographics. The survey found that more than half (58%) of all respondents believe that high-risk groups are themselves responsible for contracting hepatitis.⁶

‘Decoding the Hepatitis Inaction Bubble’ also sets out critical steps to combat inaction in hepatitis B and C testing and treatment. Recommendations set out collaborative actions across stakeholders including expanding access to affordable, decentralized testing, integrating hepatitis education into routine healthcare, ensuring workplace policies support preventive care and addressing workplace-related fears where health screenings are tied to employment.

References

1. WHO. Priorities in planning hepatitis B and C testing services: new operational guide. Accessed March 19, 2025. https://www.who.int/news/item/05-12-2024-who-publishes-operational-guide-on-priorities-in-planning-hepatitis-b-and-c-testing-services#.
2. WHO. Hepatitis. Accessed March 19, 2025. https://www.who.int/health-topics/hepatitis#.
3. WHO. WHO sounds alarm on viral hepatitis infections claiming 3500 lives each day. Accessed March 19, 2025. https://www.who.int/news/item/09-04-2024-who-sounds-alarm-on-viral-hepatitis-infections-claiming-3500-lives-each-day.  
4. American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA). Recommendations for testing, management, and treating hepatitis C: HCV testing and linkage to care. Accessed March 19, 2025. Available at: https://www.hcvguidelines.org.
5. WHO. Global hepatitis report 2024. Accessed March 19, 2025.  https://www.who.int/publications/i/item/9789240091672. 
6. Roche. Decoding the Hepatitis Inaction Bubble Survey. Accessed March 19, 2025.  Available at: https://www.roche.com/solutions/focus-areas/infectious-diseases/hepatitis.

Roche release