For the estimated 6-12 million people living with Hepatitis C in India, access to treatment was already way below the level of need, but when the COVID-19 pandemic arrived, the national Hep C programme ground to a halt. Activists repeatedly took to the streets during lockdown until services resumed. Loon Gangte, co-founder of the Delhi Network of Positive People (DNP+), explains.
India’s Ministry of Health had long been criticised for its failure to treat people living with Hepatitis C, and treatment activists had campaigned tirelessly to change this, before the country finally announced its free Hep C programme in 2018.
However, the programme has only “limped” forward since its announcement.
“The rollout didn’t start until around July 2019, and in Delhi only about 3,000 or 3,500 people have been enrolled,” says Gangte. “The exact stats on how many people live with Hep C and how many have treated are not readily available.
The treatment figures area drop in the ocean, there is urgent need to scale up. Tens of thousands of people have died while waiting. The WHO estimates 176,000 people in India die yearly of complications related to hepatitis B and C.
“Throughout 2019 the programme was just crawling and crawling, clinics kept closing, most people couldn’t start treatment. We were already insisting that the government act, this was before COVID came along,” says Gangte.
“During the pandemic treatment just stopped. People’s treatment disappeared overnight.”
Towards the end of July 2020, the health ministry reassured DNP+ that Hep C services would resume. They didn’t. “The next day we returned to protest. Again we were told the clinics would reopen. Again, they didn’t. So we went back the next day. We kept doing this until the promise was kept. Over a period of 10 days we went back to protest for four days and one night.”
“After the 10 days, the clinics reopened, but there are two remaining problems,” Gangte explains.
“People are turning up, after a gap of weeks or months in their treatment, and being handed new prescriptions. We’re hearing reports that often they are not the same drugs as what they were on before. Not only that but drugs are being prescribed without the right tests. There’s no liver scan, or viral load test.”
“We don’t know what is going to happen. I worry,” says Gangte. “What I fear is people developing resistance.”
“Putting people back on treatment – and a different treatment without tests – it needs it be monitored. I think it will be one or two years from now when we will see the impact of COVID-19 on people living with Hep C.”
“The second problem is that even though the clinics have reopened many people can’t get in.
Many of our clients are homeless people, sleeping on the flyover. For them to get an ID card, it’s impossible. Clinics previously agreed to accept DNP+ letterhead as ID, but they’ve changed the rules.
The ART Centre still accepts it, so what’s different with Hep C patients to HIV patients – and some of them are the same people, so they can collect HIV treatment with a letterhead, but not for Hep C!”
“Not only must they have an ID card, but a COVID test before entering,” Gangte explains that he would agree about a COVID-19 test if it was practical and it actually helped. “But it’s not a rapid test, people have to come back days later for their result – and they have no ID! So it’s not really even a test, it’s a way of stopping people getting through the door.”
“It’s supposed to be a Centre of Excellence, so what’s the logic?” says Gangte. “Is it deliberate?It’s starting to seem like it is.”
“Some bureaucrats are on our side, and we will pursue the issue until it is resolved.”
“We fought, and continue to fight Gilead for fairer drug prices for Hep C, for sofosbuvir, so that more people can get access and save lives, and yet we’re the same guys who also have to knock on the door of government and Ministry of Health.”
Two patents applications have been granted to Gilead Sciences on sofosbuvir, a key drug in Hep C treatment. DNP+ opposed the two patents filed by Gilead as the application “clearly does not involve any inventive step”. DNP+ was successful in having a patent rejected in the first round of the examination. The network believes that the subsequent granting of the patent is unmerited and continues to challenge this monopoly.
“These actions deny people of their right to life – and we will not accept it.”