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Hepatitis C sufferers die awaiting treatment

09 June 2003

Hundreds of people infected with hepatitis C are suffering and dying unnecessarily through lack of treatment, one sufferer of the disease says. He spoke to Ruth Hill about the frustration of watching his health deteriorate while knowing there is a drug that could cure him – if he had the money.

"Mark" has carried a time-bomb in his liver for years, possibly decades.

The Christchurch resident in his late 40s, formerly a fit and healthy man who spent 30 years in the fishing industry, is now "totally debilitated" and unable to work.

He is dogged by fatigue, joint pain and recurrent infections as a result of a hepatitis C infection, which has left his liver chronically-inflamed.

But worse than his physical afflictions is the mental torment of knowing he may develop cancer or cirrhosis – and that a potential cure exists for him, if only he could afford it.

Mark, who asked not to be identified, says he and thousands of others are "in limbo", waiting for the Government to say whether it will fund the drug, which is their only hope.

According to Health Ministry estimates, about 25,000 New Zealanders have the disease, with 1300 more infected each year.

About 80 per cent of infections are spread through intravenous drug use, but tattoos, body piercings and even toothbrushes – anything that entails blood-to-blood contact – are all possible sources of infection.

A public perception that "only drug addicts" get the disease adds to the crippling effect on sufferers, Mark says.

"Many of us have never used intravenous drugs, never had a tattoo or even a blood transfusion and we are completely ignored.

"The occupational side to the disease is rarely publicised – knife injuries are endemic in the fishing industry and freezing works, but people have little idea."

As a senior operator in the fishing industry, he often had to administer first aid, treating "everything from cut fingers to severed limbs".

Mark was also a blood donor for several decades, no doubt unwittingly spreading the virus through the health system.

Prior to 1992 when screening of blood products was finally introduced (two years after it was recommended), hundreds of haemophiliacs were infected with the virus.

He himself was only diagnosed a year ago with a particularly virulent strain, type 1a.

He has had no treatment.

A drug called peginterferon, used in combination with ribavirin, can cure up to 80 per cent of cases.

"However, it's horrifically expensive and it's not subsidised at all.

"Even those with private health insurance can't afford it.

"For the want of a few grand, many of us are going to die of this."

Pharmac – the government drug-buying agency – says negotiations over peginterferon are currently in progress with two pharmaceutical companies.

But due to commercial sensitivity, it was unable to say when the negotiations were likely to be concluded.

Mark says the fatality statistics do not reflect the full extent of the disease.

Of 75 people infected, 40 to 60 will suffer liver damage; eight to 20 will develop cirrhosis and between two and five will suffer liver failure and or cancer.

"Just looking at all the people who die of liver failure or cirrhosis won't give you the full picture – what about all those who die of cancer and secondary cancers?"

It is estimated that up to half of those infected do not even know it, a situation Mark describes as "scandalous".

"I don't know where or when I became infected but through no fault of my own, I have this horrible, terrifying, disgusting disease."

ACC spokesman Richard Braddell says people infected with hepatitis C through an accident at work or medical misadventure are entitled to compensation.

However, it gets harder to prove a person contracted the disease at work if a particular incident cannot be pinpointed.

"Whether cover applies in a specific situation is made after assessment of available evidence and is decided on the basis of a balance of probabilities."

In the period July 2002 to April 2003, 21 claims relating to hepatitis C were "active", totalling $218,000.

Health economist Ian Sheerin, from the National Addiction Centre at the Christchurch School of Medicine, warns the current lack of screening and treatment of hepatitis C may cost the health system between $166 and $400 million over the next 30 years.

Predictions are murky because not much is known about the progression of the disease, which can take up to 40 years to show symptoms.

"The most conservative estimate says that about 8 per cent of people will progress to serious liver disease within 20 years, while other studies put it as high as 20 per cent."

The only drug currently funded by the Government is interferon, which (according to the Hepatitis Foundation) has barely a six to 13 per cent cure rate.

In combination with ribavirin, it has a 41 per cent success rate, but the dual therapy (which costs $23,000 in Australia) is not currently funded by Pharmac.

However, the new generation drug, peginterferon, boasts a 39 per cent cure rate by itself, and when used in combination therapy, can cure between 60 and 80 per cent of some strains of the virus.

Essentially, the New Zealand health system is "two generations behind when it comes to treatment", Mr Sheerin says.

"I would estimate that only 5 per cent of people in Christchurch have received treatment, which surprised me.

"I had expected that once people had entered the methadone treatment and been identified as hepatitis C carriers, they would get treated.

"But most of them would not be aware of the options, the treatments have simply not been available and there's a complete lack of awareness."

Chief executive of the Whakatane-based Hepatitis Foundation, John Hornell, says the cost of treating five people with peginterferon is the equivalent of one liver transplant.

Most people die on the waiting list.

A liver transplant costs $140,000 in the first three months, while a liver resection (removing a tumour) costs about $20,000.

Peginterferon has limited side-effects compared with the old drugs, patients only need one shot a week, and it is apparent very quickly whether a patient is going to respond to the treatment, saving time and money, he says.

"Roche Pharmaceuticals has been very supportive of New Zealanders, and has spent about $8 million over the last two years treating about 200 New Zealanders on compassionate grounds.

"Many people have this idea of drug companies that they are out to make huge amounts of money.

"Of course it's a business and they have to turn a profit at some point, but how long should they be expected to keep spending their own money?"

The Health Ministry's Action on Hepatitis C Plan 2002-2007, released last October, emphasises primary health care and prevention, and "prioritising existing funding".

Education for health professionals, at-risk populations and those already infected was reported to be "variable", and plans are afoot to introduce target programmes for drug-users, youth and prisoners.

But with infections set to increase by 50 per cent over the next 10 years, there is no funding as yet to implement national guidelines for health workers, a protocol for early treatment after exposure nor an adequate surveillance system.

Mr Hornell, whose foundation has just finished a hugely successful three-year screening programme for hepatitis B, says people with hepatitis C are slipping through the cracks.

"I'm not talking about testing everybody – but we need to target high risk groups, identify these people and get them on treatment.

"We're letting people walk around with a time-bomb in their livers and waiting till they pack up completely before we do anything about it."