Hepatitis B: The struggle with disease and discrimination in India

New Delhi: Submerged in her newly married life, 24-year-old Rama Saini (name changed), was unaware that the vows taken while tying the nuptial knot to be together, love and care in sickness and health by her husband will be broken in a jiffy. What turned her fairy tale marriage into a nightmare was her diagnosis with Hepatitis B.

“I was trying to adjust in my new family. After two months, one sudden day I had a severe pain in right side of my stomach and I rushed to the hospital,” said Saini.

“Several blood tests revealed that I’m Hepatitis B positive and the diagnosis changed everything, my husband’s behaviour, my in-law’s perception and behaviour towards me. No one was sitting close to me, no one was eating with me and I was blank,” she said.

Rama's husband told her to get treatment at her parent’s home faking that she can rest there as well.

She nodded considering that her husband cares for her and went to her father’s place during the illness. Time passed by and she didn't hear from her husband. She noticed that he was avoiding her.

“It’s been four years now; we are living separately. Every passing day, I feel guilty and betrayed as my husband left me saying that if they stay together, he will also get Hepatitis B,” said Rama.

Rama is not the only one who is facing the wrenching discrimination due to Hepatitis B status but scores of patients bear this brunt, which impacts their education, career, financial conditions and relationships.

The social stigma surrounding Hepatitis B

Discrimination and marginalization of people living with the chronic infection is a major concern that majorly impact the life of patients.

"Misconceptions and stigma attached to the disease often leads to marginalization and discrimination against patients. Our fight against the disease must focus on multiple fronts -- prevention of Hepatitis B through universal vaccination, identifying and treating patients through screenings and providing psycho social support to patients,” said Professor S.K. Sarin, Director, Institute of Liver and Biliary Sciences.

Several initiatives are currently being undertaken by the Government under the National Viral Hepatitis Control Program (NVHCP), to improve access to vaccines, diagnostics and treatment for patients and those at risk. However, the stigma and discrimination associated with these infections is a significant hindrance to care-seeking, treatment compliance and mother to child transmission mainstreaming.

"While there have been major efforts to remove social discrimination against HIV/AIDS patients leading to improvement in their lives, hepatitis B continue to carry a social stigma in India. The infection can easily be prevented by a vaccine,” said Nagaraj.S, physician and diabetologist at Infilifehealthcare Pvt ltd.

“The government will have to raise awareness about hepatitis B the way it did for HIV. Hepatitis B spreads through contact with infected blood and certain other body fluids. The virus can be found in saliva but, but it doesn't spread by sharing utensils, shaking hands, kissing, sneezing or coughing. There are several myths about the disease, which we have to shed and make people aware about it,” he said.

The burden of Hepatitis

There are five types of Hepatitis known as A, B, C, D and E , in which A and E are water borne and spread through contaminated food or water, then Hepatitis B, C and D are blood borne and at last Hepatitis D causes infection only along with Hepatitis B. The major concern is being focused for Hepatitis B which can spread unknowingly from a mother who is infected to a new born child. Over 90% of new hepatitis B infections occur through mother–to–child transmission and during the early age of childhood.

With 1.5 lakh deaths annually and almost 60 million Indians affected, Viral Hepatitis continues to be a serious public health concern. Most of the mortality due to Viral Hepatitis is attributed to Hepatitis B and C, which are also known as silent killers as more than 80% of the infected aren’t aware of their infection.

Hepatitis B and C infections can remain asymptomatic for years, even decades, slowly damaging the liver.

It is estimated that 4 crore people are suffering from Hepatitis B and 0.6-1.2 crore people are suffering from Hepatitis C in India.

“Fighting hepatitis is difficult because both hepatitis B and C are chronic infections that often remain dormant in the body for years before damaging the liver. Liver cirrhosis and liver cancer are common culminations of these chronic infections. Most people infected with the virus are not aware about their disease status,” said Sarin.

Chronic HBV infection accounts for 40-50% of hepatocellular carcinoma (HCC) and 20-30% cases of liver cirrhosis while chronic HCV infection accounts for 12-32% of HCC and 12-20% of liver cirrhosis in the country.

Mother-to-Child transmission is considered to be the most common mode of transmission for HBV. However, the HBV infection is both preventable by a very effective vaccine as well as treatable with oral drugs.

The solution

“Only preventive screenings to high risk individuals such as those who have undergone dialysis or blood transfusions can identify dormant infections and treat them on time. Improving India’s birth dose coverage of HCB vaccine is essential to our fight against Hepatitis B,” said Sarin.

In India, population-based syndromic and health facility-based surveillance of viral hepatitis is mandated under the Integrated Disease Surveillance Programme (IDSP).

“It is mandatory to test a mother for Hepatitis B during pregnancy and take preventions after positive results including immunologic and vaccination. Hepatitis C is now fully treatable disease. We have oral effective medication available cheaply now a days. Hepatitis A & E are limiting and needs supportive treatment,” said Ramesh Garg, head of the department, Gastroenterology, Saroj Super Speciality Hospital, New Delhi.

‘Now the major change has been achieved after introduction of vaccine for Hepatitis B which is a safe, affordable, and well tested too. The improvement area is visible in the case of Hepatitis B infection is among children group which is being reduced from 4.7% (before introduction of vaccine) to 1.3% n 2015 after introduction of vaccine. It is very much important for everyone to get vaccinated against Hepatitis B as it works as armor for you to protect from this killer viral disease,” he said.

Public health experts also claim that awareness about safe blood transfusion and use of safe needles for injections is very important, Similarly, it is crucial to educate youth about the threat of hepatitis infection through unsafe needles used in tattooing and body piercing. Regular screening and vaccination also can prevent from the disease.