When Caroline Thomas goes out into communities as an advocate for hepatitis care and treatment in Indonesia, she carries a message of understanding. She is married to someone who has lived with hepatitis B and C, so she has firsthand experience of the challenges and stigma associated with the disease. It isn’t rare to know someone in Indonesia who lives with viral hepatitis. With a prevalence of 7% and 1% for hepatitis B and C, respectively, Indonesia has one of the highest burdens in the world. 

“With the large population in Indonesia, there are an estimated 17 million people living with chronic hepatitis B and 2.5 million people living with chronic hepatitis C. These infections can lead to severe liver diseases which contribute to a significant number of deaths in the country,” Caroline explains. “By advocating for hepatitis B and C awareness and care, we hope that community work and advocacy work can contribute to the reduced stigma and discrimination in the hepatitis response in Indonesia, therefore increasing access to diagnosis and treatment.”

Stigma and discrimination are only a few of the roadblocks surrounding hepatitis care. Facing barriers such as gaps in diagnosis and the geographic distribution of healthcare centers among Indonesia’s 17,000 islands, Caroline and her fellow advocates at Peduli Hati Bangsa are working against a unique set of challenges. For example, the burden of hepatitis B is highest in rural areas where there is limited access to healthcare infrastructure compared to urban centers. “This disparity disproportionately affects marginalized populations, including indigenous communities and those living in poverty,” Caroline laments. She goes on to explain, “The disparities among marginalized communities are more prevalent than the general population. While some of the healthcare costs can be covered by National Insurance, marginalized communities such as inmates and orphaned children often do not have access to National Health Insurance, making them more susceptible to hepatitis.”

These disparities might be most acutely felt by people living in Indonesia’s prisons. In 2019, fueled by a grant from Gilead, Caroline and her colleagues orchestrated a hepatitis C virus micro-elimination program across seven penitentiaries in Jakarta. She reports, "Of 16,063 inmates screened, 62.42% began treatment for hepatitis C." Yet, the challenges loom large, including sustainability concerns and the disruption of COVID-19 that has stymied the consistent flow of crucial medications. Despite difficulties, advocates have convinced the Ministry of Health to increase budgetary support for healthcare of people in prisons, giving some hope for more progress in the future.

Caroline Thomas’s vision of an Indonesia free of hepatitis C may seem far off, but she has reason for optimism based on her personal experience. “As a person living with a partner who had experience living with both hepatitis B and C, who are able to plan a healthy family with no infection of both viruses passed to the children, we also dream that other children and partners can be protected from viral hepatitis.” 

When she founded Peduli Hati Bangsa, which can be translated as “Care for the Heart of the Nation,” Caroline had a vision of bridging the gap between awareness and care for people living with viral hepatitis. By approaching her work with a good grasp of empirical data and best practices, along with a compassionate outlook that helps overcome stigma and fear, Thomas provides a bright light that allows Indonesians to learn and follow her example of acceptance and determination.

Read about Peduli Hati Bangsa’s rally urging Indonesia’s Ministry of Health to address shortages in HCV medication.

Read more about hepatitis in Indonesia in our National Hepatitis Elimination Profile.

Photos courtesy of Caroline Thomas and Peduli Hati Bangsa.