Experts have called on the Centre to enact a law to prevent discrimination against those with hepatitis.
The calls came at a conference organised by the Institute of Liver and Biliary Sciences (ILBS) in New Delhi. Speaking at the event, leading gastroenterologist and hepatologist and ILBS director Dr S. K. Sarin stated that “several instances of discrimination and rejection against people with hepatitis have come to light over the past few years including in the field of medicine. Not only have people been denied jobs because of being diagnosed with hepatitis, many are also denied work visas to some countries if they are victims of Hepatitis B.
“This is why we feel that government should initiate strong policy measures to address discrimination and stigmatization of patients. Enacting a law to ensure Right to Live without discrimination must also be considered.”
Hepatitis – a viral disease which can cause long-term damage to the liver – has a sizeable footprint in India. Viral hepatitis – of which there are five main types: A, B, C, D, and E – can be spread (depending on the type) by contaminated food and water, sexual transmission, and contaminated blood. Non-viral instances of hepatitis can also be caused by excessive alcohol intake and autoimmune diseases.
Such is the impact of viral hepatitis that experts assert it to be equitable to the “Big Three” infectious diseases – HIV/AIDS, malaria, and tuberculosis – in terms of the threat to public health. Hepatitis B and hepatitis C alone affect forty million and six to twelve million Indians respectively, resulting in 1.5 lakh deaths every year. In addition, multiple Indian states have been flagged as high-risk areas for hepatitis E infection. Poor sanitation infrastructure and natural disasters such as flooding heightens the risk.
Despite the high burden of hepatitis, access to treatment is difficult. This, in part, is down to low diagnosis rates: fewer than ten percent of individuals infected with hepatitis are aware and fewer than ten percent who are aware receive treatment. In India, less than one percent of the 9.175 million people eligible for treatment for the hepatitis B virus receive it. According to the ILBS, social stigma is a major factor behind this. According to Dr Sarin, “many patients with chronic hepatitis experience shame, decreased self-esteem, fear, depression, and isolation.”
Dr Sarin did state that the Centre’s National Viral Hepatitis Control Programme goes some way towards improving access to diagnostics, treatment, and vaccination against hepatitis A and E. However, he added, “the stigma and discrimination associated with these infections is a significant hindrance to care-seeking, treatment compliance and mother to child transmission mainstreaming” – hence the need for an anti-discrimination law. Similar anti-discrimination legislation is in place for individuals with HIV/AIDS and mental illness.
The ILBS will, ahead of World Hepatitis Day on July 28th, be conducting awareness drives under the banner of EMPATHY (Empowering People Against Hepatitis). “We want to create a change in the mindset of the people,” Dr Sarin said. This will aim to raise public knowledge of hepatitis and involve policymakers, civil society groups, advocates, healthcare providers, and patients alike.
The importance of such campaigns cannot be understated. What is needed in concurrence, as Dr Sarin has highlighted, is the need for recognition by the government that discrimination against those with hepatitis cannot be allowed and should be banned. Doing so can help facilitate the dialogue needed to improve treatment uptake, compliance, and outcomes and raise diagnosis rates, in addressing one of India’s most overlooked public health crises.