Hepatitis C: India has failed to tackle the deadly disease

India lacks accurate data to tackle Hepatitis cases

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 Organization has adopted the Draft Global Health Sector Strategies for viral Hepatitis (2016-2021), identifying areas and strategies for action.

The Indian scenario

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 per cent. 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 per cent of liver cancer and 10-20 per cent 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 per cent 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 per cent of liver cirrhosis and 40-50 per cent 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.

Cheap drugs do not reach poor people

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, Indian ranked first among the top 10 countries with the largest global share of extremely poor people with a total 30 per cent share. They were living on less than $1.25 a day, says an analysis done by non-profit Lawyers’ Collective.

It adds that only 24 per cent 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.

Hepatitis C patents

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 antivody, 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.

All you need to know about Hepatitis

The government of India has included vaccine for Hepatitis B in its vaccination programme, but has paid scant attention to Hepatitis C

Hepatitis is an inflammation of the liver, most commonly caused by a viral infection. There are five main viruses that cause the disease: Hepatitis A, B, C, D and E. According to the World Health Organisation (WHO), types B and C lead to chronic disease in hundreds of millions of people and, together, are the most common cause of liver cirrhosis and cancer.

The global health organisation says that hepatitis A and E are typically caused by ingestion of contaminated food or water. Hepatitis B, C and D usually occur as a result of parenteral contact with infected body fluids.

Common modes of transmission of these viruses include transfusion of contaminated blood or blood products, invasive medical procedures using contaminated equipment; in the case of hepatitis B, the virus gets transmitted from mother to baby at birth, from family member to child, and also by sexual contact. The government of India has included vaccine of hepatitis B in its vaccination programme.

However, hepatitis C has failed to receive the attention of the government so far. Hepatitis C is inflammation of the liver caused by hepatitis C virus (HCV). About eight out of 10 people infected with HCV develop permanent (chronic) infection.

It is estimated that anywhere between 1.5 to 3.5 per cent people in India are suffering from the disease. However, there is no mechanism in place to compile data to give a clear picture of its prevalence.

Hepatitis C is a blood borne-disease. As in the case of HIV/AIDS, it spreads through contact with infected blood and shared needles, particularly among drug users. The main sources of HCV are injected drugs and unsafe blood.

Those who are at risk include healthcare workers exposed to infected blood (though accidental needle prick, for example), children born to HCV-infected mothers, long-term dialysis patients, and people who have multiple sex partners.

HCV does not spread by sneezing, hugging, coughing, food or water, sharing eating utensils or drinking glasses, or casual contact.

The disease can range in severity from mild illness lasting a few weeks to a serious, lifelong condition that can lead to cirrhosis of the liver or liver cancer.

Drugs available on monthly installments

People in an extremely backward Haryana town, where almost every fifth person has hepatitis C, are forced to seek treatment on EMIs

High incidence of hepatitis C in Ratia and the absence of a government-run treatment centre for the liver disease in the small town of Haryana have opened a novel business opportunity for pharmaceutical firms. Companies that manufacture expensive interferon injections—the main component of hepatitis C treatment—have been offering them on monthly instalments since 2012.

Subhash Chandra, a moderately well-off farmer of Bara village in Ratia, was diagnosed with the disease in 2012. His treatment required him to take weekly injections, each costing `6,240, for six months (see ‘Costly cure’). “Since I could not pay the entire amount, pharmaceutical company Fulford offered me injections on monthly instalments,” he says. If untreated, hepatitis C can lead to liver failure or liver cancer.

“I started the treatment in 2012 after making an initial deposit of `9,400 and agreeing to pay the rest of the amount in two years,” says Chandra. Over the course of the treatment, his dosage reduced from 100 mg to 80 mg. “But as I had already given post-dated cheques, my treatment cost did not reduce,” he says.

Fulford (India) Ltd is a subsidiary of Merck & Co Inc. Down To Earth spoke to a Fulford agent in Ratia who confirmed that the company does provide interferon on monthly instalments and gives additional medicines for free.

Chandra is still paying his loan of `1.59 lakh. Later, three of his family members—his wife, brother and sister-in-law—were diagnosed with hepatitis C. “We could not start their treatment because we cannot afford it, even on instalments,” says Chandra.

Ratia is an extremely backward sub-division of Fatehabad district with 31.7 per cent of its population belonging to the scheduled castes. The rate of incidence of hepatitis C in the town is 18 per cent against the national average of around one per cent.

The high incidence of the disease in Ratia was highlighted for the first time in 2011 when a large number of liver disease cases were reported that the doctors there were unable to cure. A government survey was conducted the same year after activists in the region demanded that the problem be investigated.

“Of the 8,500 people tested on a random basis in the survey, 1,600 were found positive for the virus,” says Ram Chander, who heads Committee Against Hepatitis C, a local body formed by the people.

Despite the alarmingly high incidence of hepatitis C, it took the government two years to start a treatment facility, that too 165 km from Ratia at the Post Graduate Institute of Medical Sciences (PGIMS) in Rohtak. “The officials did not even inform the people who had tested positive. We had to run around to get the list released,” says Chander.

The high incidence of hepatitis C found in the survey made the government undertake another study in 2012. This study, conducted by PGIMS Rohtak, found the rate of incidence to be 22.3 per cent. However, the percentage this time was expected to be higher because the samples were collected from suspected and previously positive cases of hepatitis C. The results have been published in the Australasian Medical Journal in January 2014.

The hepatitis C virus (HCV) spreads in the same manner as HIV/AIDS—through sexual transmission and blood (see ‘Silent killer’).The study says that wrong medical practices are the main reason behind the spread of HCV in Ratia. Of the 1,630 people found HCV positive, 1,146 (70.3 per cent) had a history of injection as a mode of treatment from local doctors; 1,088 (66.7 per cent) had a history of dental treatment; 5.6 per cent had blood transfusions; and four patients had dialysis. The researchers observed the medical practices of local doctors and dentists and found that most of them were using unsterilised needles and syringes. About 76 per cent of patients had received injections from local doctors in the past six months. “We found that there was a doctor who was using a syringe on multiple patients,” said Ramesh Verma, associate professor, PGIMS, and lead author of the study.

“Dental problems are very common in Ratia. Dentists do not use modern machines to sterilise equipment. They boil equipment at 100°C which is not enough to kill HCV,” says Niraj Kataria, general physician and part of the Committee Against Hepatitis C. “People do not know that they should allow doctors to use only disposable syringes,” he adds.

Long distance medication

PGIMS Rohtak offers free treatment and medicines to people belonging to the scheduled castes and below poverty line categories on Tuesday and Saturday every week. However, travelling to Rohtak is a major problem because it takes about four hour by road. “I spend `500 on transport every week. The doctor administers injection and gives pills for only a week,” says Naresh Rani, 32, of Ratta Khera village. Earlier, doctors would give an injection to be administered by a local doctor in Ratia. “But there were complaints of injections being sold. So the practice was stopped,” she says.

Patients have been demanding that the treatment centre be shifted to Ratia. Chandersays Committee Against Hepatitis C has made several representations to the government, but to no avail.

No programme soon

India has the second highest number of HCV-infected people in the world but a nationwide programme is unlikely anytime soon. Though the Union health ministry’s National Centre for Disease Control (NCDC) is planning a national programme on HCV on the lines of HIV/AIDS and a committee of doctors is framing it, NCDC director L S Chauhan says, “It will take two-three years to start the programme.” He says data on HCV prevalence in different parts of the country is yet to be collected. But Leena Menghaney, India Coordinator, Access Campaign of Medecins Sans Frontieres, says, “The government should start the programme without waiting for statistics. We cannot afford to have people suffer till then.”

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