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The celebrities who suffered from Hepatitis C – before the new miracle cure

The butterfly logo that symbolises the battle against hep C. Image/Supplied

With a simple logo and message, hepatitis C campaigners are hoping to reach the thousands of Kiwis who still don’t know they have the deadly virus – or that there’s a cure.

Keith Richards, David Bowie, Lou Reed, Brian May of Queen, Dusty Hill of ZZ Top, David Crosby, Gregg Allman, Aerosmith’s Steven Tyler, Natalie Cole, Etta James, Marianne Faithfull, Naomi Judd, Anthony Kiedis of Red Hot Chili Peppers and Martin Phillipps of The Chills. What, apart from making music, do they have in common?

The answer is that they feature on the long list of musicians to have contracted the hepatitis C virus, most of them through drug use. (Judd, who was infected in a needlestick accident when she worked as a nurse in the 1980s, is a notable exception.)

Macro alias: ModuleRenderer

All but Richards suffered chronic liver disease. He later bragged about his “incredible immune system”, but he was really just in the lucky minority of people who clear the virus after the acute phase of infection. Far from being debilitated, Richards is about to set off with The Rolling Stones on a 17-date tour of the US that was delayed earlier in the year when Mick Jagger had heart surgery.

Crosby received a liver transplant and will be on immunosuppressant drugs for the rest of his life. Tyler endured an 11-month course of interferon, the only available treatment at the time, an experience so punishing, he says, that it broke up his marriage. Kiedis, preposterously, claims to have controlled his infection with intravenous ozone.

Mick Jagger and Keith Richards of The Rolling Stones. Photo/Getty Images

Others weren’t so lucky. Cole died of kidney and heart problems probably related to end-stage liver disease. Bowie and Reed both died of liver cancer, Reed only months after a liver transplant.

Phillipps, as the new film The Chills: The Triumph & Tragedy of Martin Phillipps starkly tells, might have been dead now, too. But his story is different. His life and his liver were saved by a new generation of direct-acting antiviral drugs.

The last and most powerful of these, Maviret, was funded by Pharmac this year for all New Zealanders with the virus. The eight-week course of treatment with Maviret carries no significant side effects and is so effective that experts are now beginning to talk about eliminating hepatitis C altogether. But what will that take?

Infectious diseases are not easy to eradicate. Humanity has managed it only twice.

Martin Phillipps of The Chills. Photo/Getty Images

In 1979, the World Health Organisation announced that smallpox had been driven from the planet. Twenty-two years later, rinderpest, a viral plague that had been killing cattle since the Stone Age, was also declared dead by the United Nations.

Eradication has never been done without a vaccine, and it takes generations. Smallpox wasn’t banished until nearly 200 years after Dr Edward Jenner first produced a smallpox vaccine. And, as recent headlines have reminded us, it’s easy to go backwards – measles, which mutated about a thousand years ago from the rinderpest virus, is still with us.

Four years ago, Dr Ed Gane, the country’s leading liver specialist, talked about a study in Melbourne in which doctors treating injecting drug users with new direct-acting antiviral drugs had not only cured those patients of the liver virus hepatitis C, but also “been able to turn off all new infections in Victoria”.

What that showed, said Gane in 2016, “is that we don’t just treat the sickest people on the waiting list, we have to treat everyone. And if you do that, including those people who are still injecting, it’s what we call treatment as prevention – and we will actually eliminate hepatitis C without a vaccine within the next 15-20 years.”

Months later, the Australian Government put up the funding that seemed to make that dream real, committing $200 million a year to the purchase of antivirals to cure the quarter of a million Australians with hep C. On March 1, 2016, the new drugs – which were being sold privately by their maker, Gilead Sciences, for up to $100,000 for an eight-week course of treatment – became available on the Pharmaceutical Benefits Scheme at a cost of only $40 to patients.

The dream was becoming real. Or was it?

Dr James Freeman and Hazel Heal, whom he cured of hepatitis C: working together to make sure Maviret gets to the sufferers whose lives it can save. Photo/Ruby Harris/Supplied

“It’s been woeful,” sighs Tasmanian GP Dr James Freeman, who has built his professional life around battling the virus since 2014. “Hep C has had its 15 minutes of fame.”

Australia’s treatment numbers are sagging. Forty thousand people were treated in 2016, only half that many in 2017, fewer again in 2018. “The monthly treatment uptake has tanked,” said the head of Hepatitis Australia, Helen Tyrrell, on the ABC last year.

And yet, Australia is doing as well as any country in pushing back against hep C – which affects 71 million people worldwide – and is still on track to meet the end goal that the World Health Organisation (WHO) set in 2016 of “global elimination” of the disease by 2030.

But what the WHO means by “elimination” is not what you might think. It doesn’t mean eradication. The target is officially an 80% reduction in hepatitis C incidence and a 65% reduction in mortality.

“It’s a definition that only a bureaucrat could love,” says Freeman. “It allows you to declare success without actually completely succeeding.”

This year, Pharmac funded Maviret, the last and most powerful of a series of curative drugs for hep C (see “Vanquishing the virus”, Listener, March 2). If previous antivirals, including those funded in Australia, have been experienced as functionally a miracle cure by patients, Maviret is a slightly bigger miracle. Treatment takes eight weeks, most people have no side effects, it treats all genotypes of the virus and, according to a recent German study, it’s 99.5% effective.

We have the means to cure the 50,000 New Zealanders infected with hepatitis C, but do we have the plan? And what can we learn from Australia’s experience?

The answer may lie in a butterfly.

Campaigners Rachel Stace. Photo/Supplied

Big trouble

In 2015, 51-year-old Hazel Heal was in big trouble. Doctors said her liver was rapidly deteriorating. The hepatitis C-related cirrhosis she’d borne for 18 years – and through two punishing and unsuccessful courses of interferon, the only available treatment at the time – was on the verge of decompensation, or failure, the point at which a liver transplant is the only realistic hope of survival. She needed urgent treatment and the newly available antiviral drugs would cost as much as $100,000 from the manufacturer, Gilead.

She had already called a real-estate agent about selling her Dunedin house to pay for the treatment when she heard about the FixHepC Buyers Club, which leveraged Gilead’s pricing-to-the-market strategy by importing the drugs from countries such as India, where they were far cheaper. She found a doctor willing to write a prescription for the parallel-imported antivirals, flew to Australia to pick up the drug, and was cured.

The doctor was James Freeman. And since that first consultation in Tasmania, he and Heal have established a remarkable partnership. First, they worked to convince New Zealand doctors that the generic drugs were safe and effective and that they should write prescriptions that would let their patients use them and, second, they want to make sure Maviret gets to the people whose lives it can save.

In April, Heal travelled to the International Liver Congress in Vienna with Rachel Stace, a co-founder of the tiny local advocacy group Hep C Action. They were accompanied by Claire Newman, manager of the charity Seed the Change, which has been helping Hep C Action. But it was Freeman, the doctor who saved Heal’s life, who paid their travel costs.

“James knows we won’t disgrace him in the world,” says Heal.

The Vienna conference is the liver-medicine world’s big event. More than 10,000 delegates attend and the accompanying exhibition floor is dominated by the display stands of well-heeled pharmaceutical companies. There, in a tiny corner allocated to not-for-profit organisations, the New Zealanders set up their stand.

Claire Newman. Photo/Supplied

They did it with a cloth backdrop bought from Spotlight and held in place with gaffer tape. One of the display fixtures was a cake stand that cost a couple of dollars. The pens they gave away were presented in a cutlery drainer from someone’s flat.

“We were the little people,” says Heal. “There were mega-thousands-of-dollars stands. Big, big companies. And people were coming up to us and saying, ‘This is the best concept here.’”

That concept is centred on a striking rainbow-coloured butterfly logo that was originally commissioned by Freeman from Native American artist Marty Two Bulls Sr to symbolise the battle against hep C. With Freeman’s help, the New Zealanders had the design made up into high-quality enamelled pins and other ephemera. In an environment of sleek corporate colour schemes, the butterfly seemed to speak of something different – something hopeful and human.

Hep C is a disease entangled with human folly. Although some people contract the virus through medical misadventure or bad tattoo practice, and the number of gay men infected through sexual contact is growing, overwhelmingly the people in New Zealand with the virus were infected through injecting drug use, perhaps decades ago.

That brings with it a powerful stigma. Historically, hep C sufferers have experienced that stigma not only from people around them, but also from medical professionals. Most people keep it quiet. As many as half the people with the virus in New Zealand still don’t know they have it.

“At a GP conference last year, a doctor told me she thought I was really brave,” says Heal. “She’d got it in a workplace accident, treated herself with interferon, never told anyone – not her family, not her colleagues – and kept working. And I thought, what does she think of people with hep C, then, if she can’t tell anybody?

“We’ve got a long way to go with attitudes. And that’s where this butterfly helps, because it just seems to cut through that, it really does start conversations in a positive way.”

Elimination challenge

New Zealand has some advantages over Australia in the elimination challenge. Australia got a head start with fully funded treatment, but Maviret is a pan-genotypic cure: it works for everyone. We also have the advantage of political stability. Freeman says one reason for Australia’s loss of political focus on the hep C strategy was the revolving door in the Minister of Health’s office: the country has had five health ministers in seven years.

“You then replace that minister with a new minister, who doesn’t know anything about the portfolio, and has the usual one-year learning curve to work out what’s going on, and we’ve never recovered from that.”

The Australian Government was prepared to lock in a billion-dollar commitment to fund the lifesaving drugs, but only recently gave the Hepatitis Foundation of Australia $3 million for an advertising campaign.

“The deal we got in Australia was, we will spend $200 million a year every year for five years,” Freeman says. “So, write a cheque to the drug company – ‘Righto, there’s $200 million.’ And it was based on nothing more than that. So, if we treated one patient, it would cost us $200 million. If we treated a million patients, it would have cost $200 a dose.

“The first year we treated roughly 40,000, and it cost us roughly US$5000 per treatment. The next year we treated only half as many. It cost us twice as much per head to treat them. So, if you think about that, the impetus for an advertising campaign that says, ‘Hey, get tested, get treated’, is huge. Because you’re not talking about a few million dollars at stake, you’re talking about $100 million. And was one million dollars spent? Nah.”

Where New Zealand is way behind Australia, says Ed Gane, is in diagnosis.

“Most people living with hepatitis C in Australia have been diagnosed, he says. “Not everyone, but well over 90%. But in New Zealand, we think 40-50% of people living with hepatitis C are still undiagnosed. So, no matter how good the medicines are, you’re not going to cure everyone if they don’t know they have hep C.

“We need to get out there and get people tested. There’s a lot of thought going into the best way to actually get people tested. One way is to raise awareness about risk factors. That includes ever having used [injected] recreational drugs in the past – even just once.”

Diagnosis and the availability of a cure are two of the three conditions for elimination, says Gane. The third is connection to treatment, which is where Australia hasn’t done so well. Although it is a reportable disease in Australia and there is a central registry of hep C diagnoses, the system lacks a mechanism to tell all those people living with the virus that there is now a miracle cure available.

Dr Ed Gane: “We need to get out there and get people tested.” Photo/Ken Downie/Supplied

Effective campaigns

Gane is a member of the committee formed by the Ministry of Health to make recommendations for a national hepatitis C action plan and Heal and Stace were asked to fill positions reserved for advocates. The committee is due to report in June.

“What I really want is for them to listen and use the butterfly symbol in a national awareness campaign,” says Heal. “I want that in all countries, not just here. We’ve got good ideas for effective campaigns. We definitely need celebrities and public figures. We don’t think they need to have hep C – we’re looking for people to say that they haven’t had it, but they’ve had a test. I think that would be an effective campaign.”

They have one celebrity figure already: at the New Zealand premiere of The Chills: The Triumph and Tragedy of Martin Phillipps in Dunedin, Phillipps and members of the production team wore butterfly pins and the butterfly logo was prominently displayed at the venue.

A few others have stepped into the light – Judd and Faithfull have both campaigned for hep C awareness – but most have said nothing.

Stars not infected, but prepared to front, are fewer, but in 2015, the UK pop duo Right Said Fred, who admitted using steroids in the 1980s, publicly went and got tested for hep C as part of a “I’m Not Too Sexy to Get Tested” campaign in Britain. Both tested negative.

But hepatitis C is not just a celebrity disease. Three years ago, a group of New Zealanders who had lived with the virus shared their stories. Most had been cured, either through the punishing road of interferon or via antiviral drug trials administered by Gane.

“It was like having the Sword of Damocles lifted,” a senior civil servant cured in one of Gane’s trials said. “For years, every time I had an ache or pain, I would worry that something was wrong, that liver cancer had got me. I didn’t count on a future old age or feel confident making those sorts of plans. It was quite subtle, really, but once it was gone, I was able to see how much the disease had affected me.”

Understandably, few of those people were willing to have their names published. A successful campaign will need not only people like them to brave the stigma, but also people prepared to simply say in public that they’re getting the test, just in case.

“If you could get one All Black …” muses Freeman. “Because they have this blood rule on-field, it’s recognition that HIV, hep B and hep C are spread by blood-to-blood contact. We’d want them to say, ‘I’ve taken the test, I don’t have hep C.’ And even if they do have hep C, ‘I’ve taken the test, wait eight weeks, I don’t have hep C any more.’ It doesn’t matter, the answer will still be the same. So, taking the test, there’s no risk. If you do have hep C, we’ll cure you and we won’t run [the ad in the media] for eight weeks!

“This afternoon, there are 10,000 New Zealanders driving home from work going, ‘Oh, jeez, I’m feeling tired’, where it’s hep C and they don’t know they’ve got it. And you need to get to that group. You need to be able to communicate with them, and go, ‘Guess what? You’ve got something, you might not know it, but we can fix it, and make you feel better.’ And that’s the key message, because I’m not going to get hep C-tested unless there’s some benefit for me. And having this universal cure available, free, means that, yeah, you got it, and eight weeks later, no, you don’t.”

The undiagnosed group are “the luckiest people ever”, says Heal. “It’s incredible. Walk in, find out, but as soon as they get the bad news, they get the good news. It’s a remarkable thing.”

Part of the reason for Australia’s high rate of diagnosis, says Gane, is the years of work put into awareness among risk groups by the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM).

By comparison, says Heal, “there really are no NGO services for hep C in New Zealand, right at a time when there should be. The Aids Foundation does fantastic work and this year it had an email campaign where it was looking for 500 people with undiagnosed HIV in New Zealand. Well, we’re looking for 50,000.

“And there’s nothing. The Hepatitis Foundation is for hep B – everything it does on the side for hep C is because it just happens to have the resources left over. There’s no funded advocacy. I think there should be, and I think we, as Hep C Action, should be in line for some of the funding. It’s crazy – we’ve got 40-1 hep C infections to HIV.”

Not taking the cure, Freeman emphasises, almost inevitably means an early death. The infected population includes younger adults – there are still nearly 1000 new infections a year in New Zealand, nearer 10,000 in Australia – but three-quarters of people with the virus were born before 1965.

“We see people who are 60 often in pretty good health,” says Freeman. “But by the time they’re 65, they’re getting really sick. Come age 65, the hep C demographic just disappears. They’re all dead. There’s no one there, they’re gone.”

Those demographics, says Gane, call for “two different public awareness campaigns”. Even before the new antivirals were funded, he worked to get the diagnosis and monitoring for the 5000-10,000 people who inject drugs in New Zealand moved to community facilities, such as needle exchanges, and beyond hospitals, where many of them had had bad experiences. Those places will still be the best route to such high-risk groups.

“Then there’s the much larger population of people who have no association with injecting at the moment, but who may have been exposed in their teens and twenties. And those people are in their forties and fifties now. The best way to engage with them is through their GPs or some other community site, such as a pharmacies.

“There, people can be treated by a GP. But we’d like to go further. If treatment is so innocuous, we’d like nurses to be able to prescribe it. We’d like pharmacists to be able to prescribe it. We’d like ready access to this treatment in the future, because it is so easy, so safe and you don’t need to monitor people when they’re on it.”

Actually, what Gane would really like is for all of us to get the test.

“That’s something that is not being considered in New Zealand, but is being considered in a number of countries.”

Heal thinks it will happen. “Testing is coming down in price all the time and we think every adult once in their life, barring new risk factors, should have a test. That’s how countries are going to achieve national elimination.”

The harder part

Neither Pharmac nor manufacturer AbbVie is saying what each treatment with Maviret will cost taxpayers, but Gane suspects we’ve negotiated one of the lowest prices in the world. Ultimately, it will be much cheaper than dealing with the awful complications that come with untreated hepatitis C.

As Australia has discovered, finding the money for hep C antivirals is the easy part. The harder part is cultural: finding the message that will bring in people for testing and moving past the drug-related stigma that may have prevented them doing so in the past. It means reaching people who may be profoundly isolated.

“At least with HIV, which was mostly a disease of gay people, they had that community, and they had the support around that,” says Freeman. “With hep C, there isn’t a community, because people, even if they were involved with the drug network, part of the purpose of getting clean is to break off from that network. If you didn’t get it from that source, which is about half the people, you have no relationship to anyone else with hep C. So, there’s no network support around it. It’s staggeringly isolating.”

The battle in both countries will benefit greatly from political decisions made in the 1980s to introduce needle exchanges and opioid-substitution therapy as harm-reduction measures. (Australia went further in the late 1990s, when the first medically supervised injection room opened in Sydney.) These services are either controversial or simply unavailable in many other countries.

Beating the disease will require a similar social and political commitment, the embrace of a view that, as Gane puts it, “we don’t care how you got hep C; have a test and if you’ve got it, we’ll cure you”.

Gane says about 100 New Zealanders a week are now starting treatment with Maviret and “if we can keep that up, we’ll get rid of hep C within 10 years”.

Keeping it up, as the experience across the Tasman shows, will be the challenge. And if Heal gets her way, we’ll do it by changing the conversation with a butterfly.

Taking the test

Hepatitis is a viral infection that causes inflammation of the liver. There are five known strains: A, B, C, D and E.

Hepatitis A and E are usually short-term infections and are typically spread through faecal contamination.

Hepatitis B can be spread by blood-to-blood contact or other bodily fluids, while C is almost always transmitted by blood-to-blood contact (until 1992, blood was not screened for hepatitis C before transfusions). Hepatitis C is more likely than B to become a chronic infection: as many as 85% of people infected with C will develop a chronic infection that may be carried for 20-30 years. The outcome of hepatitis C is often cirrhosis and liver failure or liver cancer.

Perhaps the biggest difference between B and C is that there is a vaccine available for B. The vaccine is also protection against the lethal hepatitis D, which occurs only as a coinfection with B.

Getting tested for hep C is as easy as asking your GP. 

For further information, visit the Hepatitis Foundation’s website or its Facebook page, or call 0800 33 20 10

This article was first published in the June 1, 2019 issue of the New Zealand Listener.