A patient of hepatitis C lost job and another with hepatitis B couldn't get a visa. Several others didn't seek treatment for the disease fearing stigma. These are just some of the instances of discrimination against patients, and its fallout on those suffering from viral hepatitis that Dr S.K. Sarin, director of the Institute of Liver and Biliary Sciences (ILBS), can recall off-hand. “There is a law that says you can't discriminate against people living with HIV. There must be a similar law to include people suffering from viral hepatitis, so that no one can deny them a job or stigmatise them,” Sarin said, ahead of the World Hepatitis Day on July 27.
The stigma prevents people from getting treatment, with the disease getting worse and leading to complications such as cirrhosis, and even requiring a liver transplant. A liver transplant is expensive (costing upwards of Rs 20 lakhs at a private facility) and had the added complication of requiring a close relative as a donor, he said.
In India, four crore people are suffering from hepatitis B, and almost 1.2 crore people suffer from hepatitis C. According to the WHO, viral hepatitis has caused about 1.34 million deaths globally.
Hepatitis B and C [both liver infections] are transmitted through activities that involve contact with HBV infected blood or body fluids including injection of a drug that involves sharing needles, syringes, or drug preparation equipment of infected persons, sexual contact and sharing razors and toothbrushes (infrequent modes of transmission in the case of hepatitis C), among other routes.
Hepatitis B can also be transmitted from the infected mother to the child at the time of delivery, or contact with blood or open sores, wounds and ulcers of infected persons. Hepatitis C can be transmitted through transfusion of unscreened blood and blood products, and needle stick injuries.
Given that the infection is not communicable, and can be passed on through "blood transfusion" only, it was unfair that society discriminated against these patients, Sarin said.
“Sometimes I see patients who got the infection at time of a caesarean delivery, and their children are grown-up, even in their 30s. The virus stays in the liver for two or three decades and multiplies, and several years have gone by before they even know it. Listening to their stories in our OPD can be a heart-breaking experience for doctors,” he said.
With 1.5 lakh people dying of these infections, Sarin said that there was a need to create awareness on the illness—people need to get themselves screened, get all the required doses of vaccination (this is for hepatitis B; there's no vaccination against the hepatitis C virus yet), and seek proper treatment for the disease.
“The drugs are really cheap in this country. In the US, the drugs for viral hepatitis cost 90,000 dollars for the full course that lasts 90 days [hepatitis C]. In India, the drugs cost Rs 3,000-4,000. And 95 per cent people get cured too. The availability of cheap drugs and high cure rates are also the reason why there's not much enthusiasm for a vaccine for hepatitis C,” he said.
In the case of hepatitis B, several anti-viral medications were available at a low cost (to be taken for 9-12 months), but lifelong follow-up is required. The ILBS had also designed an app called 'Hepcare' that allows people to check their disease status and suggests treatment options. Though enough testing facilities were available in the country, point of care testing (bedside testing) was required to ensure that more people were diagnosed early, he added.
Taking into account the rising number of deaths due to viral hepatitis, last year, the Union government had launched the National Viral Hepatitis Control Program. The ILBS has also been at the forefront of a national campaign to increase awareness about the disease.