Home tattooists are the new front line of a rapidly morphing war against hepatitis C. There is no vaccine for the disease which is causing liver cancer at an alarming rate. Otago hep C patients, tattoo artists and health advocates are among those calling for nationwide changes that could see this long-stigmatised virus eradicated within our lifetime, writes Bruce Munro.
Angela Stenersen is about to begin a year-long treatment to try to rid her body of hepatitis C. The trainee Dunedin photographer will be taking daily doses of drugs so powerful she will not be able to study. It is the price she is paying for going under the gun of a home tattooist.
On 37-year-old skin that has been the canvas for plenty of elaborate body art, the small Rolling Stones tongue and lips tattoo is as amateurish as it is seemingly innocuous.
Miss Stenersen had always loved the Stones. And getting the tattoo would help an acquaintance who was new to the art and wanted some skin on which to practice.
The work was done at the backyard scratcher's home in 2012. He was paid in alcohol.
''It wasn't until afterwards that I went over everything in my head and thought 'Oh my God. How stupid was I?','' Miss Stenersen says.
''He wasn't changing his water; he was wearing gloves but he was touching everything with the same gloves; changing his needles but not his barrels; using the same razor ...''
It was about nine months later that blood tests in preparation for dental surgery revealed she had hep C.
''As soon as I found out, I knew where I got it,'' she says.
Blood tests shortly before the tattoo had shown she was clear of the virus. There had been no other tattooing in the interim. And the woman tattooed immediately prior to Miss Stenersen already had hep C.
Miss Stenersen is unusual. Most people infected with the virus do not have any symptoms for many years. But she has quickly gone from healthy and active to often unwell, low on energy and lacking concentration.
She is also lucky. Discovering she is infected has meant she is able to get on to treatment. Although rough on the body and mind, the daily injections and pills will give her a 70% chance of a cure. It is better than dying of hep C-related liver disease, the fate of a growing number of people.
Hepatitis C is a blood-borne virus that damages the liver, causing scarring. If untreated, it can lead to liver cancer or liver failure.
About 3% of people globally are infected with hep C. In New Zealand, estimates vary between 50,000 and double that. It is thought that up to 75% of Kiwis with hep C are unaware they have it.
Hepatitis C Resource Centre Otago health promoter Allison Beck says that is one of the main reasons why, in 2012, Australian and New Zealand medical specialists warned urgent action was needed to tackle predicted soaring rates of hepatitis-related liver cancer.
''The people who unknowingly contracted hep C in the '70s, the baby boomers; their hep C is now causing liver disease,'' Miss Beck says.
''Some are being told they have liver cancer and have three months to live.
''In the meantime, through sports, tattooing or just not covering cuts or sores, they may have infected others. The medical profession is very worried.''
Figures provided this week to the Otago Daily Times show the number of hep C-related liver cancers has increased by more than 140% during the past five years. The Ministry of Health data states that the annual number of hep C-related liver cancer cases referred to the National Liver Cancer Service, at Auckland Hospital, has risen from 21 cases in 2008 to 51 cases last year.
Ministry chief medical officer Dr Don Mackie says while the number of people being referred for liver transplants has more than doubled, the small number of organ donors means the number of transplants has not increased in 10 years.
Of last year's 51 cases, only a dozen were able to get transplants.
And while there is a surge in the number of people in their 50s and 60s belatedly discovering they have hep C, Miss Beck says the increasing popularity of home tattooing is also putting a new generation of young people at risk of the disease.
New Zealanders love body art, Miss Beck says. According to a 2009 UMR survey, 36% of New Zealanders under 30 years have a tattoo, making this the most tattooed nation per capita in the world.
It is an art form that should be encouraged, but kept safe, she believes.
Unfortunately, the growing popularity of tattoos, in tandem with the ready online availability of cheap and sometimes nasty tattoo guns and gear, mean a growing number of people are unwittingly putting themselves and others at risk.
''Essentially any time your skin is compromised you would want it to be in a setting akin to a doctor's surgery. That's not what is happening,'' Miss Beck says.
Hep C is a hardy virus. It was thought hep C could live outside the body for up to five days. But new research has shown it can survive and cause infection weeks, and potentially months, later. And it does not have to be visible to be a threat.
There are no accurate figures on how many backyard scratchers (as home tattooists are known) are out there. Miss Beck says anecdotal evidence suggests there are about 100 in Invercargill. Miss Stenersen estimates Dunedin has ''dozens''. And most appear to have little or no knowledge of how to keep themselves and others safe.
Mark (not his real name) was a backyard scratcher. He started seven years ago, as a 17-year-old, using gear borrowed from his brother. He tattooed people at home both before and after a six-month stint working in a tattoo studio.
The studio time gave him hygiene and safe practice awareness that is rare among home tattooists. Mark is reluctant to talk, saying most home tattooists would refuse to say anything. But he has realised there is a lot he still does not know and has decided to retrain for a different career.
''There's a lot of things that need to be taken into account, and most people aren't doing them,'' he says.
''Too many home-job tattooists don't know what to do with the stuff afterwards. They'll go and put a tattoo needle in the rubbish bin. That could jab someone in the foot, and that's them infected.''
He had two people tell him, just before tattooing them, that they had hep C. He suspects there were more who did not say they were infected. It makes him wonder how many less hygiene-conscious home tattooists are unwittingly spreading disease.
Tattoo artist Brendan Smith, of Agency Inc, does quite a lot of work covering up and reworking bad tattoos. He has seen photos posted online of people being tattooed at home on picnic tables and dirty couches.
''I even saw one not long ago of someone tattooing not wearing gloves,'' Mr Smith, of Dunedin, says.
''It was quite shocking to me.''
He and Mark both say it is too easy to buy tattooing gear.
Mark has one more thought that gives some insight into the state of play among home tattooists.
''Also, people shouldn't be tattooing under the influence of anything; the person receiving it and the person doing it,'' he says.
Among the concern and gloom there is one strong, bright ray, the prospect of actually being able to eradicate hep C.
Despite the absence of a vaccine, Hepatitis Foundation of New Zealand chief executive John Hornell says the development of effective treatments has been proceeding apace in recent years.
''We are no longer talking about treating people with hep C. We are talking about curing people with hepatitis C, and eradicating the disease,'' Mr Hornell says.
''We have the potential now to eradicate hepatitis C from New Zealand in our lifetime.
''This just doesn't happen in medicine ... We're talking smallpox, we're talking polio. It's hugely exciting.''
But before the war can be won, several significant battles need to be fought, those involved warn.
The first is the need for legislation regulating tattooing, Hepatitis C Resource Centre Otago co-ordinator Glenys Needs says.
Throughout New Zealand, only three local authorities have bylaws covering tattooing - Dunedin, Napier and Auckland.
But Ms Needs says home tattooing is becoming so prevalent and poses so much risk that a national approach is needed.
''This is essentially a medical procedure that needs legislation around it for the safety of everyone involved,'' she says.
She has the support of Dunedin City Council's Ros MacGill.
Ms MacGill, who is the council's environmental health team leader, says five home tattooists have been issued formal warnings under the city's bylaw. Legislation would ensure the same standards were being enforced throughout the country, Ms MacGill says.
''It would be a strong tool for education as well ... We need to get the information out there that there are problems with this activity,'' she said.
A formal qualification pathway for prospective tattooists is needed, Miss Beck says.
''A lot of tattooists we are talking to are saying they wish there was a course young people could take to get them well-educated on how to tattoo, how to be clean about it. The tattooists we've talked to are crying out for it,'' she says.
It is a point reiterated by erstwhile scratcher Mark.
''A lot of people learn from the internet, and we all know what the internet is like, there's a million different ways to do the same thing. So a lot of people are learning by trial and error,'' he says.
The most inexplicable and long-running battle to date has been over whether hep C should be a notifiable disease.
At present, the medical officer of health only has to be notified if someone has acute hep C - a short-term illness that occurs within the first six months after someone is infected. But because most people have no symptoms in the early stages, their hep C, if it is identified at all, is not notifiable.
As a consequence, New Zealand's hep C figures are guesswork based on Australian statistics.
The implications are many and far-reaching, Miss Beck argues.
''There would be a huge advantage in making chronic [ongoing] hep C infection notifiable,'' she says.
''It would mean we know more accurately what is happening in New Zealand with hep C. That would raise awareness of the disease, which would increase the number of people getting testing. So we would get more people going for treatment.
''If hep C is kept under cover it is just going to stay there or even get worse. If we bring it out into the open, I think we could see hep C disappear.''
She gets no argument from the hepatitis foundation head.
''It's a no-brainer,'' Mr Hornell says.
''It's bizarre that it's not notifiable.''
Probably thousands of New Zealanders have had blood tests which show they have hep C. But most are unaware or have not sought advice and treatment. Mr Hornell says.
Making it notifiable would enable the foundation to access those records and contact thousands of infected people, offering information and advice.
A Ministry of Health media adviser said the person most qualified to say whether hep C should be notifiable was overseas.
Dr Mackie acknowledged the lack of accurate data on hep C prevalence had been ''an issue for a number of years''. He said it was ''being discussed by the ministry with health professionals''.
When Miss Beck sought treatment for hep C about six years ago it was a year-long process that gave her a 30% chance of getting a cure. She beat the odds. Today the standard Pharmac-funded treatment, which Miss Stenersen is about to undergo, has a 70% success rate.
But there are already better options out there. If you have $100,000 to spend, you can get a 12 week, pill-only, sofosbuvir and ribavirin treatment with a more than 90% cure rate.
Ms Needs believes the reduced costs, such as less nursing care and shorter time on a sickness benefit, must make the new treatment as cost-effective as the older one.
Pharmac director of operations Sarah Fitt said the government drug-buying agency had ''received a funding application for sofosbuvir'' and would be ''seeking advice from our main clinical committee PTAC [Pharmacology and Therapeutics Advisory Committee] at its August meeting''.
That drug and a couple of others in the pipeline offer real hope of eradicating hep C, Mr Hornell says.
''It's not going to take big changes. But it is going to cost money,'' he says.
''Who knows what these drugs will cost in the end. What Pharmac does extremely well is negotiate good prices for New Zealanders.''
The final, and perhaps the biggest battle is one of perception. The stigma of having hep C, a disease traditionally associated with intravenous drug-taking, still puts people off being tested and seeking help until it is too late.
''I felt dirty,'' Miss Stenersen recalls of the day she was told she had hep C.
''It took me a good part of a year to get rid of that feeling and realise I just had a virus.''
