hub: India

For World Hepatitis Day, we spoke with Dr Kanica Kaushal (Assistant Professor, Institute of Liver and Biliary Sciences, New Delhi; WomenLift Health Cohort Member, India ‘24) about her efforts leading campaigns to raise awareness to tackle rising hepatitis cases in the country.

Why is hepatitis a rising public health concern in India? 

Kanica: There are five main strains of the hepatitis virus: A, B, C, D, and E. Type B and C can lead to chronic disease in millions of people and are the most common cause of liver cirrhosis, liver cancer, and viral hepatitis-related deaths. According to the World Health Organization’s (WHO) Global Hepatitis Report 2024, India accounted for 11.6 percent of the global viral hepatitis disease burden in 2022, making it the country with the second-highest disease load after China (27.5 percent).

In India, the number of hepatitis B cases is largely due to mother-to-child transmission, accounting for almost 90 percent of cases. This is because most blood banks now provide safe blood, and needle-stick transmission among healthcare workers is limited due to widespread vaccination. As for hepatitis C, the WHO report indicates that India is one of the ten countries where 80 percent of infections are among injection drug users.

Despite the introduction of the National Viral Hepatitis Control Program, which provides free diagnosis and treatment for Hepatitis B and C in India, its reach remains limited.

What are the reasons behind the prevailing social stigma against the illness? 

Kanica: The stigma surrounding hepatitis B infection has a profound impact on millions of lives worldwide. It leads to loss of educational and job opportunities, separation from families, and, tragically, even loss of life. Many individuals affected by hepatitis B avoid seeking treatment until it’s too late. For far too many people, living with hepatitis B means suffering from shame and isolation.

The stigma is fuelled by ignorance about the virus and misconceptions about its transmission. It particularly affects women, who often face rejection from their in-laws as well as their husbands. Those affected not only endure societal and familial exclusion, but also internalize feelings of guilt and self-condemnation. Misinformation about casual transmission, such as sharing food or utensils, contributes to these discriminatory attitudes. Many fear disclosing their condition, which prevents them from accessing essential care.

You are leading two campaigns to raise hepatitis awareness in India – EMPATHY (Empowering People Against Hepatitis) and WOMB (Winning Over Mothers with Hepatitis B). Could you tell us a little more about them?

Kanica: I have been fortunate to work under the capable guidance of Dr. Shiv K Sarin, Director and Chancellor of the Institute of Liver and Biliary Sciences, who showed confidence in my ability to lead such impactful campaigns.  The ‘EMPATHY’ Campaign attempts to bridge the gap between psychosocial needs and justified rights of the millions of Hepatitis B and C virus-infected people in India. Since 2018, we have positively impacted over 50 million lives, striving towards the vision of a hepatitis-free India and fostering enduring and impactful change. The WOMB campaign  aims to build a community that will help foster a cohesive group to advocate for women with the virus, challenge stigma and discrimination, and prevent mother-to-child-transmission-of Hepatitis B.  Additionally, a patient network helpline has been launched for Hepatitis B & C patients to address any concerns related to navigating the disease.

In your experience, what are the factors to keep in mind while engaging directly with communities to tackle stigma and change behaviours?

Kanica: In my experience, it is critical to uncover the root cause of the stigma—lack of knowledge, fear, or other socioeconomic issues —and accordingly address it while exercising cultural sensitivity to understand and respect local customs, beliefs, and values. This includes creating safe spaces and establishing environments where people feel comfortable discussing sensitive topics without fear of judgment. Support groups and patient networks have been introduced under both WOMB and EMPATHY.

While communicating with the community, it is also essential to provide accurate, accessible information in the language(s) most accessible to dispel myths and misconceptions that fuel stigma. Engaging local leaders, respected community members, or celebrities who can serve as positive role models and advocates for change is also an effective approach towards tackling stigma. For example, the Olympic medalist Mary Kom has endorsed the EMPATHY Campaign and has appeared in several informational videos. Encouraging individuals affected by stigma to share their experiences, as personal narratives, can be powerful tools for changing perceptions.

Finally, it is crucial that the community is actively involved in the process, from planning to implementation to foster ownership and sustainability. Behaviour change takes time, so policymakers must plan for sustained, long-term engagement rather than short-term interventions to focus on building the capacity of community members to become advocates and agents of change themselves

What are the characteristics of an effective behaviour change campaign?

Kanica: A strong foundation for creating a behavior change campaign that is focused, relevant, scientifically sound, engaging, and adaptable includes well-defined, measurable goals for the desired behaviour change to provide focus and allow for effective evaluation of the campaign’s success; insight into the audience’s current behaviours, motivations, and barriers to change to address specific needs and concerns effectively; employing strategies grounded in behavioral science and proven theories of change; clear and emotionally resonant communication; and regular assessments of campaign effectiveness and ‘willingness to adapt’ to ensure the campaign remains on track and allow for improvements based on real-world impact.

In your opinion, what role can leadership play in designing and implementing an effective awareness and behaviour change campaign to tackle hepatitis in India? 

Kanica: Leadership plays a key role in establishing a clear, long-term vision for hepatitis elimination, developing a comprehensive strategy with specific goals, timelines, and key performance indicators, and securing the financial, human, and technological resources to support the campaign. It is also crucial to bring together various stakeholders, including healthcare providers, NGOs, community leaders, and government agencies, to create a collaborative effort. Moreover, effective leadership facilitates the creation or modification of policies to support hepatitis prevention, testing, and treatment, addressing vaccination, healthcare access, and drug pricing. Finally, high-profile leaders can also use their platform and influence to raise awareness about hepatitis, reduce stigma, and encourage testing and treatment, potentially through media appearances, public speaking, or social media campaigns.