India lacks accurate data to tackle Hepatitis

At a time when millions in India are suffering from Hepatitis C, the country has neither accurate data regarding its prevalence nor policies to support patients. While the world is observing Hepatitis Day to increase awareness about the disease, millions are dying every year in India as the government has no programme to support patients. The United Nations adopted the Sustainable Development Goals (SDGs) in 2015 with an aim to combat Hepatitis by 2030. The World Health Organisation has adopted the Draft Global Health Sector Strategies for viral Hepatitis(2016-2021), identifying areas and strategies for action.

The Indian approach can be better understood with the response of Health Minister J P Nadda when he said in the Parliament in 2015, “The figures of Hepatitis C-affected Indians who could not afford medical treatment are not collected centrally.” He thus admitted the lack of data.

Due to the absence of an HCV (chronic Hepatitis C virus) surveillance system in India, there is a complete lack of knowledge about the actual number of people living with HCV-related liver diseases and the people who died of it.

Global studies estimate that there are 8.7 million people living with chronic HCV in India, according to a rights-based analysis on Hepatitis C released on Monday by Lawyers’ Collective, a non-profit.

Experts guess that the prevalence of chronic HCV infection in India is somewhere around one percent. The disease is mostly prevalent in Punjab, Haryana, Andhra Pradesh, Puducherry, Arunachal Pradesh, and Mizoram.

A statement released by the Delhi-based Institute of Liver and Biliary Science (ILBS) in 2014 highlighted the approximate number of people living with chronic Hepatitis C infection, which stood around 12 million.

If the situation has not worsened, it has not improved since then, experts say. As per the statement, chronic HCV infection accounts for 12-32 percent of liver cancer and 10-20 percent of cirrhosis cases in India. Most people with chronic Hepatitis B or C are unaware of infections and are at serious risk of developing cirrhosis or liver cancer.

To tackle the deadly disease, the Government of India said that it had launched a national programme for prevention and control of viral Hepatitis during the 12th Five Year Plan period. But there is no activity visible at the ground level.

Anand Grover from Lawyers’ Collective said that at present Hepatitis C is killing more people than HIV/AIDS in India. However, the government has no plans for Hepatitis C. Hepatitis C is just one part of the complete burden of viral Hepatitis in India. Hepatitis is a group of infectious diseases divided into A,B,C,D, and E. Hepatitis B and C are both blood borne and can be transmitted from one human to another. India has over 40 million Hepatitis B-infected patients (second only to China) and constitutes about 15 percent of the entire pool of Hepatitis B in the world.

Tribal areas in India have a high prevalence of Hepatitis B. Every year, nearly 600,000 patients die from HBV (Hepatitis B Virus) infection. Chronic Hepatitis B infection accounts for about 30 percent of liver cirrhosis and 40-50 percent of liver cancers in India. Outbreaks of acute and fulminant Hepatitis B still occur mainly due to inadequately sterilised needles and syringes, ILBS director Shiv Sarin has been quoted saying in the statement mentioned above.

Until a year ago, treatment for Hepatitis was extremely costly and not that effective. However, the situation has changed a bit with the introduction of sofosbuvir owned by Gilead, a US-based drug manufacturer. But the cost at which the medicine is available is still out of reach for many people.

Gilead knows that there are 103 million people living with Hepatitis C in developing countries and for this it has engaged with 11 India-based generic pharmaceutical manufacturers to develop and sale sofosbuvir, a drug used to cure Hepatitis C.

At present, the medicine is available in India at the cost of around Rs 20,000. But the question arises whether this is affordable for most people. As of 2011, India ranked first among the top 10 countries with the largest global share of extremely poor people with a total 30 percent share. They were living on less than $1.25 a day, says an analysis by non-profit Lawyers’ Collective.

It adds that only 24 percent of the population is covered by some form of health insurance either through government-sponsored schemes or private health insurance. For the poor who are really vulnerable to the disease, how can we expect them to buy medicines priced at Rs 20,000.

Paul Lhungdim, president, Delhi Network of Positive People, said that definitely there were benefits (of sofosbuvir). However, few are able to afford the drug and poor patients are not in a position to buy the medicine.

To provide relief to the poor, either the government will have to intervene and take care of the cost of the medicine or generic companies have to compete with Gilead, which is likely to bring down the cost further, experts feel. But the model Gilead has opted for is stopping generic companies to go for it.

The price of treatment of HCV (Hepatitis C virus) has become a global concern with unscrupulous patents hindering access. While Gilead’s Sofosbuvir has been priced at around $84,000 for an entire course in the USA, generic Indian companies, through voluntary licences, are selling their versions for less than $200 for a full course. Prices are even lower in other countries.

The patent for Sofosbuvir was granted in May 2016 but has been challenged by community members. “Gilead’s business model is to basically kill generic competition for which VLs are the new route. We will continue to fight to preserve affordable access and we hope the government does that too,” Anand Grover, a senior lawyer associated with Lawyers Collective which works for public interest, said.

High cost of diagnosis is another challenge that patients are facing. At present, an individual has to pay almost Rs 15,000 for the diagnosis which is a huge amount for a poor person.

An individual infected with HCV will have to go for seven tests, including HCV antibody, NAT-HCV RNA, full blood count, creatininine, liver function, genotyping and fibroscan. Altogether, these tests cost Rs 14,160 in government hospitals.

Screening for Hepatitis C is a problem, said Homa Mansoor, a physician working with Médecins Sans Frontières, an international non-profit.

There are also no proper diagnostic facilities available. Even when a patient has been diagnosed, the disease is not taken seriously as there are no instant threatening symptoms, she added. HCV does not kill immediately. Sometimes, problems may start surfacing 20 years after the infection in the form of liver cirrhosis or liver cancer.

HCV is more dangerous than HIV because of its longevity. “The mode of transmission of HCV is similar to that of HIV. It is dangerous because an infected person does not even know about it. So, the patient continues with his life and might infect others,” Mansoor said. If the patient is screened early, the efficacy of the treatment will be better.

Currently, diagnostic facilities for HCV are available only for those who are also infected with HIV. How can someone expect a patient to go to a health centre saying that he or she had such a history, Mansoor questioned. DOWN TO EARTH