• The Listener
  • North & South
  • Noted
  • RNZ

There's a free cure for hepatitis C, but thousands of the infected don't know it

Illustration/Getty Images

As many as 30,000 Kiwis don’t know they have the hepatitis C virus – and that there’s now a free cure.

Ed Gane has been instrumental in helping to find a cure for hepatitis C, a blood-borne virus that affects 170 million people worldwide and is a leading cause of liver cirrhosis, liver cancer and liver transplants.

But the Auckland liver specialist’s work is not finished yet. Gane, whose role in finding a cure for hepatitis C has made him something of a superstar both to his international colleagues and his New Zealand patients, has now turned his attention to making sure every New Zealander with the potentially fatal infection gets treated. He wants New Zealand to achieve the World Health Organisation’s goal of eliminating hepatitis C by 2030.

“We have to start pushing the message that you need to get tested and get treated,” he says.

Thanks to the drugs that Gane helped develop, it’s possible to cure 99% of people with hepatitis C with an eight-week course of tablets. Now, the latest of these drugs, known as direct-acting antivirals (DAAs), is available free to all New Zealanders with the disease.

Macro alias: ModuleRenderer

Pharmac started funding the drug, called Maviret, on February 1. Unlike its predecessor, Viekira Pak, which has been funded by Pharmac since October 2016, Maviret can cure almost everyone with hepatitis C, rather than just the 57% of people infected with genotype 1 of the virus. Once Maviret becomes freely available, New Zealanders with genotypes 2 to 6 will also have access to free and effective treatment.

Gane says Maviret is the end of the line when it comes to new DAAs to treat hepatitis C. “There will be no other drugs after Maviret, which has a 99% cure rate and no side effects.”

But it’s not the end of the line when it comes to getting rid of hepatitis C, which affects about 50,000 New Zealanders. Of those, up to half are thought to have been diagnosed and about 6000 have been treated and cured – some as a result of drug trials led by Gane and others since Pharmac started funding Viekira Pak.

That leaves as many as 30,000 who don’t know they’re infected – or that they can be cured. Hepatitis C is a chronic disease and it can take decades before people start noticing symptoms such as fatigue and depression. By that stage, the liver may already be badly damaged.

Auckland liver specialist Ed Gane: “This [drug] was a massive breakthrough.” Photo/Ken Downie/Listener

Sharing needles

It sounds simple: free cure available; take it once a day for eight weeks; end of story.

But there’s a catch. Hepatitis C is a blood-borne virus that’s spread when blood from an infected person enters the body of someone who isn’t infected. This can happen in several ways, including through the use of unsterilised tattoo needles or – as is potentially the recent case in Hawke’s Bay – surgical equipment that is not properly sterilised. Up to 55 patients who were treated using the equipment in early February are now being tested for several blood-borne viruses, including hepatitis C.

However, one of the main risk factors for hepatitis C infection is sharing needles, syringes or other equipment to prepare or inject drugs. The stigma attached to this means many people are reluctant to admit they may be at risk, let alone front up for testing and treatment.

“The biggest problem is that people who have had known risk factors and know they’re at risk are not coming forward,” says Gane, who is chairing a Ministry of Health working group to develop a national hepatitis C action plan. “There are also people who are not aware they’re at risk or they’ve forgotten it or suppressed it.”

As Hazel Heal, founder of the lobby group Hep C Action Aotearoa, observes, lack of treatment uptake is a problem unique to hepatitis C. “There’s no other disease where you have a free cure, but you have this problem of finding people who want to take it.”

Even if you shared a needle only once when you were 17, you’re still at risk. And although former drug users are happy to talk anonymously about the transformational effects of treatment – Hep C Action has adopted a butterfly logo to symbolise the metamorphosis that takes place once you’re cured – they’re not prepared to do so publicly to encourage others to get tested and treated.

“I’d love to run a campaign where all these respectable-looking baby boomers put their hands up and say, ‘I’ve been cured,’” says Rachel Stace, consumer representative on the Northern Region Hepatitis C Working Group, which ran a “test and cure” advertising campaign on the back of Auckland buses last August. “We need to change people’s perceptions about who is likely to have hep C. Many are grey-haired professionals who don’t fit the druggy stereotype.”

Cheap treatment

Heal, too, is determined to break down the “druggy” stigma associated with the disease. In the end, she says, it doesn’t matter how people got it. What matters is getting rid of it. “My bottom line is, we all got it by accident and we can all be cured.”

Until recently, her main focus has been on getting cheap treatment for New Zealanders with genotypes 2 to 6, who can’t use Viekira Pak. She took advantage of a “buyers’ club” set up by Tasmanian GP James Freeman to import generic versions of the drugs that can treat those genotypes, which cost up to $90,000 in their labelled version. The recent introduction of Maviret means she, too, is now turning her attention to making sure everyone with hepatitis C gets tested and treated.

“We have to find the tens of thousands who are missing and make sure that people realise being diagnosed is good news, that once you’re cured, you’re going to feel amazing.”

The virus is thought to have been around for about 100 years, but it started becoming a problem only after injecting drug use became common during the 60s and 70s.

“The proliferation of imports of hard drugs, such as heroin, into New Zealand and Australia in the 70s and 80s led to a marked epidemic of hepatitis C in both countries,” says Gane.

Not everyone with the disease got it from sharing needles in their hippie days. Some were infected by blood transfusions before July 1992, when blood donors started to be screened for the virus. Other risk factors include getting tattoos in an unlicensed studio and spending time in prison; as many as 35% of prisoners have hepatitis C.

The 10,000 or so current intravenous drug users are also at risk. They’re thought to account for 1000 new cases each year.

Originally known as “non-A non-B hepatitis”, the C virus was first identified in 1989 – Gane’s final year of training in New Zealand. It’s dominated his life ever since. At first, doctors thought the virus didn’t cause long-term health problems, but it soon became clear this wasn’t the case. Gane’s research, while training in hepatology in London in the 1990s, found the virus was a major cause of liver transplants in Europe.

It’s now thought that a third of people with untreated hepatitis C will eventually develop cirrhosis and, of those, 5% will develop liver cancer or liver failure. However, it can take years for the damage to occur, and the early symptoms are often vague and unspecific: fatigue, aches and pains and brain fog.

A dramatic effect

As a liver specialist, Gane is only too aware of the long-term damage caused by the virus. Of the 300 New Zealanders who develop primary liver cancer every year, a third have hepatitis C.

The virus continues to be a leading cause of liver transplants. However, overseas figures show that curing the disease with DAAs is changing this. “In Europe and the US, where they’ve been using the drugs for three years, the number of people needing transplants as a result of hepatitis C has dropped by 40%. It’s having a dramatic effect.”

Gane has been pivotal to the development of those drugs. For many years, the only available treatment was a drug called interferon, which had to be injected for up to12 months, caused terrible side effects and had a very low cure rate.

“It was a nasty drug. It made you feel as though you had the flu, it made your hair fall out, it made you depressed and often suicidal. And at the end of a year of this ghastly treatment, only about 20% of people were actually cured.”Not surprisingly, people weren’t queuing up to use it. Only 50-60 New Zealanders were treated with interferon each year.

Two million treated

Things began to change in the early 2000s, when Gane and others started running trials to test newly developed DAAs, often in combination with interferon. The breakthrough came in 2011, when Gane did a trial of a new drug called PSI-7977 in combination with another drug called ribavirin. Thirty of the 40 New Zealanders in the trial were also given interferon and took the three drugs for various lengths of time. The other 10 were given PSI-7977 and ribavirin, but no interferon for three months. All 10 were cured.

When Gane presented the findings to the American Association for the Study of Liver Disease conference in San Francisco in November 2011, it caused quite a stir. Those who were there said you could hear a pin drop, and James Freeman, founder of the FixHepC Buyers’ Club used by Heal and others, describes it as a “penicillin moment”.

“All of a sudden, it looked as if hepatitis C was going to be easy to treat,” he says. “Prior to that, there were no cures for any viruses, so this was a massive breakthrough – penicillin kills bacteria and this drug kills a virus.”

PSI-7977 had been developed by a US biotechnology company called Pharmasset. Within weeks of Gane presenting his findings, Pharmasset had been sold for US$11 billion to another company, Gilead, which developed PSI-7977 into a drug called sofosbuvir. It remains the backbone of hepatitis C treatment around the world, with almost two million treated with the drug last year.

Gane went on to lead trials of DAAs developed by other drug companies. Between 2010 and 2015, 2500 New Zealanders were cured of hepatitis C during these trials. He also lobbied Pharmac to make the drugs freely available to everyone, and he actively supported Freeman’s efforts to give people access to cheap generics.

“That was a brave thing to do – to back such a left-field idea,” says Freeman, who is one of Gane’s many admirers. Others include the patients he cured during the trials, who say he deserves a knighthood. Among them is Stace, who nominated Gane for New Zealander of the Year in 2017. He didn’t win – that honour went to Taika Waititi – but he was named Innovator of the Year.

“He’s a legend,” says Freeman. “The medications he has been instrumental in developing will save millions of lives worldwide over the next decade. He should be rightly celebrated for his contribution to medical science. It’s quite amazing.”

Test & treat

Diagnosing hepatitis C involves two blood tests. The first tests for antibodies, which indicate that you have been infected in the past. The second is to check whether the infection is still active. About 25% of people spontaneously clear the infection, but remain antibody-positive.

Some laboratories automatically do the second test if the first test is positive. Others require a second blood sample to determine whether the infection is still active. GPs can order the free test, and they’ll also prescribe any necessary drugs.

It’s also possible to use a finger-prick test to screen for antibodies. The Waitematā District Health Board is doing a pilot study, offering the pin-prick test at seven Auckland pharmacies in several suburbs, including Henderson, Kelston, Birkdale and Glenfield.

The results take five minutes and anyone who screens positive is given forms to have further blood tests.

The pilot began last July and will continue until 500 people have been tested. Principal investigator Natalie Gauld says the results will be analysed to see how many people who tested positive had further testing, and how many were treated.

“It could ultimately be rolled out to all pharmacies, but we need to look at the pilot results first.”

Australia is often seen as a hepatitis C success story. About 80% of infected Australians have now been tested and the country is well on the way to eliminating the virus. Among the measures it introduced was a hepatitis C education programme for GPs and drug and alcohol specialists, which has been running since the early 2000s.

Ed Gane believes GPs will be central to eliminating the virus here, too. He says it may eventually be necessary to introduce general screening, along with a national register to ensure that people who test positive get treated.

“We want to avoid what’s been happening in the US, where people have been diagnosed, but they haven’t been linked to treatment.”

This article was first published in the March 2, 2019 issue of the New Zealand Listener.