Hepatitis B virus (HBV) and hepatitis C virus (HCV) infection are major causes of acute and chronic liver disease (e.g. cirrhosis and hepatocellular carcinoma) globally and cause an estimated 14 lakh deaths annually. Worldwide, there are an estimated 2,400 lakh chronically infected persons with hepatitis B particularly in low and middle-income countries. This epidemic is a silent epidemic and more than 80 % of persons infected do not about their infection till it is too late. A person can remain healthy and asymptomatic for years but at the same time it affects their liver slowly and progressively leading to severe liver damage. Since 2000, deaths from viral hepatitis increased by 22%. In India, each year, 1.5 lakh people in India die of hepatitis, which affects almost 60 million Indians. In India, viral hepatitis is a major public health challenge that requires an urgent response with prevention strategies as the key focus area.
Diseases are treated by doctors but can only be prevented by participation of society since prevention is always better than cure. The country has recently seen launch of Viral Hepatitis Control Program on July 28, 2018. The program is likely to a go a long way in providing diagnosis and treatment for the infected. However, the social milieu and the family and work milieu is unlikely to change without understanding of the suffering felt and lived by the infected. The stigma and consequent discrimination associated with these infections is a significant hindrance to care seeking, compliance and mainstreaming. Stigma for those with Hepatitis and their families manifests in many ways starting from self-isolation to ostracization from social relationships and loss of employment. It not only brings their morale and quality of life down, but also prevents them for opportunities in life available to other people. There is a huge gap between physical treatment by drugs and psycho-social support required by individuals, to help people them live a respectable life. They are denied opportunities due to the social stigma and lack of knowledge about the disease. Though, there has been scientific and technological advancement in areas of diagnostics and treatment modalities for hepatitis, there is much left to be done when it comes to awareness about the disease & coverage of vaccination and testing and treatment facilities. It is important to address these gaps so that we progress towards eliminating this disease.
Empowering People Against Hepatitis or the ‘EMPATHY’ campaign, being implemented by ILBS, is a four-year project funded by AAI under its corporate social responsibility (CSR) is one such attempt to spread awareness about Hepatitis B & C and address stigma associated with the disease.
The overall goal of this four (4) year project is to spread awareness and de-stigmatize Hepatitis B &C and create an enabling environment for individuals with hepatitis B & C in India for social participation and care seeking.
- Generate awareness on Hepatitis B and C across India through sustained advocacy and tailored behaviour change communication for developing and promoting positive behaviours at individual, community and societal levels for people with hepatitis B & C;
- Create a conducive environment at sub-national level to encourage dialogue on hepatitis B & C between policy makers, program managers, care providers, civil society and the patients;
The EMPATHY Campaign aims to achieve effective behaviour change communication by increasing knowledge of stakeholders, stimulating community dialogue, promoting essential attitude change, influencing social response to stigma and discrimination, creating a demand for information and services, advocacy with policy makers and opinion leaders, promoting services for prevention, care and support, and by improving the sense of self-efficacy.
The EMPATHY Campaign will have four target recipients:
- General Population
- Patients & at-risk population,
- Health Care Providers
- Policy makers
The EMPATHY Campaign would be implemented by EMPATHY Resource Centre, the project secretariat, under the guidance of a Technical Working Group.
The following section gives a summary of initial plan of implementation strategy and activities planned under the EMPATHY Campaign
- EMPATHY Network of People living with hepatitis B & C
- Celebrity Endorsement
- I Pledge… (my support) initiative
- Let’s Talk Hepatitis initiative
- Art for a Cause
- National conference on viral hepatitis B & C
- Advocacy Events on Strategic Themes
- Mass and social media campaign
- Other Innovations
- Research studies