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

• Survey of more than 3,000 people in Africa, Asia and Latin America reveals inadequate knowledge of hepatitis B and C¹
• Fear and misconceptions discourage testing, with more than half of respondents assuming they are not at risk¹
• Almost one-third of respondents expressed no intention of getting tested in the future¹

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.² 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.

“Despite extensive global efforts, awareness of hepatitis remains low,” said Joanna Sickler, Vice President, Health Policy and External Affairs at Roche Diagnostics. “Hepatitis is a disease that we can prevent, manage, or even cure in some cases, but it still devastates lives worldwide. This new survey reminds us of the urgent need to improve understanding and address barriers to testing, to ensure that more people get the care needed to break the cycle of transmission.”

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,³ 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.⁴ For hepatitis C, only 36% of cases have been diagnosed, with 20% receiving curative treatment,⁴ despite the fact that over 90% could be cured with a course of anti-viral medication.⁵ 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.⁶

In the survey, which included 3,318 people aged 16-64, almost half (48%) of respondents reported only a “slight” understanding of the disease.¹ 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.¹

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.¹

The presumption of good health emerged as the most common barrier to testing, with over half of respondents assuming they are not at risk.¹ 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.¹

‘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.

For more information or to access the full report, visit: https://www.roche.com/solutions/focus-areas/infectious-diseases/hepatitis

About hepatitis

Hepatitis refers to the inflammation of the liver, which can arise from various causes, including autoimmune diseases, obesity, and alcohol use.⁷ However, most cases are caused by one of five different hepatitis viruses: types A, B, C, D and E. Among these, hepatitis B and C are the most severe, often leading to chronic liver disease, cancer, and premature death.³

About the survey

The ‘Decoding the Hepatitis Inaction Bubble Survey’¹ was commissioned by Roche and conducted by GWI, a survey-led research company with a platform of 22 million consumers in 50+ countries worldwide. The survey sought to gauge awareness of hepatitis B and C, explore testing rates, and understand barriers to seeking care. The research surveyed a total of 3,318 people (male and female), aged between 16-64, living in Asia, Latin America, and Africa. Fieldwork was carried out between 23rd April and 2nd May 2024. A full breakdown of respondents by country below:

Brazil: 251

China: 255

Ecuador: 253

Kenya: 58

Mexico: 270

Morocco: 251

Nigeria: 253

Pakistan: 252

Peru: 251

South Africa: 260

Taiwan: 250

Thailand: 252

Vietnam: 262

References

1. Roche Decoding the Hepatitis Inaction Bubble Survey, available at: https://www.roche.com/solutions/focus-areas/infectious-diseases/hepatitis

2. WHO, Priorities in planning hepatitis B and C testing services: new operational guide, https://www.who.int/news/item/05-12-2024-who-publishes-operational-guide-on-priorities-in-planning-hepatitis-b-and-c-testing-services, accessed 18 December 2024.

3. WHO, Hepatitis, https://www.who.int/health-topics/hepatitis#tab=tab_1, accessed 19 December 2024.

4. WHO, WHO sounds alarm on viral hepatitis infections claiming 3500 lives each day, https://www.who.int/news/item/09-04-2024-who-sounds-alarm-on-viral-hepatitis-infections-claiming-3500-lives-each-day, accessed 19 December 2024.

5. 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. Available at: https://www.hcvguidelines.org

6. WHO, Global hepatitis report 2024, https://www.who.int/publications/i/item/9789240091672, accessed 22 November 2024.

7. NHS, Hepatitis, https://www.nhs.uk/conditions/hepatitis/, accessed 17 December 2024.

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