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Hepatitis C has been called a silent killer. An individual can have the insidious virus for years without realising, until it starts to attack their liver with potentially deadly consequences. An estimated 50,000 people in New Zealand have hepatitis C, and the numbers are expected to increase dramatically. A community clinic has been set up Christchurch as a pilot programme with the aim of tackling the disease head on. Kelly Andrew takes a look at its novel approach.
A small yellow sign with CLINIC written in black type is the only clue to the new location of the Christchurch Hepatitis C Community Clinic. Uprooted from its former home in the central city by the February 2011 earthquake, the centre has been forced to set up in a temporary site in an industrial area on the city fringe where factories, panel beaters and fledgling businesses are the more usual tenants.
The front door is painted lilac, and inside, the waiting room comprises an old brown couch and a desk. A narrow stairwell leads to an office and small clinic room upstairs where blood tests can be taken. The basic surroundings, stocked with second-hand furniture found on Trade Me, have not stopped the clinic enrolling more than 530 clients since it opened its doors in January 2009. In fact, its laid-back informality, approachable staff and accessible community setting have been key components in its success.
Clinical Nurse Manager Jenny Bourke believes the unique Christchurch service represents a benchmark model that could be adapted to suit other cities around the country to improve management of what is a highly debilitating and increasingly prevalent disease.
“It’s the only clinic of its kind in the country and the only one internationally that’s focused solely on management of hepatitis C. It integrates primary healthcare with secondary healthcare,and I think it has the potential to be transferred in some form to other regions. It could devolve some of the antiviral treatment from hospitals into the community setting, allowing better use of our health dollars.”
It’s estimated 50,000 New Zealanders are currently living with the hepatitis C virus, and this is predicted to increase by 50 percent in the next 10 years. What makes these figures of greater concern is that, because it can be symptomless for many years, only about a quarter of people with hepatitis C are aware they are carrying the virus, with 20 percent diagnosed and only 5 percent accessing treatment. The estimated cost to New Zealand if those infected do not receive treatment is $400 million annually by 2020.
While HIV and AIDS have had a much higher public profile than hepatitis C, internationally, there are about 200 million people with the disease and only 40 million with HIV. There is undoubtedly a need to ensure early diagnosis and improved access to treatment for people with hepatitis C. The vast majority of sufferers are either past or current injecting drug users, and Bourke says this group often feels stigmatised and discriminated against, making them difficult for mainstream health workers to reach.
Establishing a community-based clinic to provide testing, support and information to people with hepatitis C was first mooted back in 2002 by a group that included Charles Henderson, now National Director of the New Zealand Needle Exchange Programme. Locating such a clinic near a needle exchange and establishing a close relationship between the two organisations seemed like a “no brainer” to him, considering up to 90 percent of intravenous drug users will contract the disease through infected needles or syringes. Christchurch has the largest population of injecting drug users in the country, with an estimated 10,000 currently in the Canterbury region.
A proposal for a community clinic was presented to the Hepatitis C Treatment Advisory Group by Bourke as a result of a collaboration between three Christchurch-based organisations – the New Zealand Needle Exchange, the Rodger Wright Centre Needle Exchange and the Hepatitis C Resource Centre – and in 2008, the government gave the go-ahead for Health Ministry funding. The 3-year pilot was part of a package of funding for treatment programmes designed to help resolve the so-called bad blood scandal of the 1990s, which stemmed from delays in donated blood being screened for hepatitis C.
Sharing governance with the nearby Rodger Wright Centre, the Hepatitis C Community Clinic opened with the aim of increasing access to diagnosis and treatment, improving monitoring and prevention of the disease and helping people with the virus have a better quality of life. Bourke says it has quickly built a good rapport with its clients.
“The thing we’ve managed to do well is to get on side with the community we serve – they wouldn’t come if we didn’t serve them well.”
In a pioneering approach to a major public health issue, the clinic liaises with other local health agencies such as general practices, the Community Alcohol and Drug Service, the Christchurch Methadone Programme and Christchurch Hospital as well as needle exchange staff.
The clinic’s 3-year pilot ended in October, and an evaluation has been carried out by the National Centre in HIV Social Research at the University of New South Wales. The results back up Bourke’s pride in the project. The report says the clinic’s model provides a continuum of care that improves the health of people with hepatitis C.
Clients expressed a high level of confidence in and satisfaction with the clinic – with 95 percent giving positive feedback. It was described as nonjudgemental, non-threatening and holistic, with clients saying they felt more supported and less discriminated against by staff at the clinic compared with mainstream healthcare workers. The report says, overall, the centre is meeting its objectives in increasing knowledge of hepatitis C, enabling lifestyle modifications and increasing access to treatment for what can be a marginalised group.
A feedback form asking clients where they would go for help if the clinic was not available found 50 percent ticked “nowhere”, suggesting these people would not have received testing and management without its help. Through the clinic, 71 clients have so far been referred and supported through to antiviral therapy at Christchurch Hospital.
The evaluation also praises the clinic’s integrated model, saying that, by working in partnership with other agencies, it was able to act as a point of entry for people unwilling to directly access conventional healthcare providers. However, it recommends clinic staff work harder on improving their relationship and collaboration with PHOs and GPs.
Bourke, who has a friendly but firm manner, spent time training in Australia and New Zealand to become a specialist hepatitis C nurse in 2006 after developing an interest in the disease while working in Christchurch as a
home detox nurse – visiting people who had been through detoxification from alcohol or other drugs. She enjoys working with her clients, and she finds the hepatitis C virus fascinating, despite its highly damaging effects.
“The more you know, the less you know; that’s what I find. I learn something new about it every week, and I tell that to my patients. There are new inroads into treatment and new clinical trials all the time, things are always changing.”
Clinic data shows 22 percent of its clients are Mäori and most are aged 35 to 49. Nearly three-quarters are on Work and Income benefits, a group most in need of more equitable access to healthcare.
Bourke says the clinic’s approach is non-judgemental and based around asking each client what they want to do and then helping them achieve it. It provides completely free access to testing, social work and on-going
information. It refers some patients to hospital-based treatment services, but others may choose not to have antiviral treatment, and they are offered information on ways to prevent their disease progressing, including healthy eating, quitting smoking and referral to the Community Alcohol and Drug Service. While the centre is nurse led, it also has a part-time GP, Mike Thwaites, to help with hepatitis C-related health concerns, and a part-time social worker, Marilyn Brown.
The clinic is open to anyone who believes they may have been exposed to hepatitis C, but with its close ties to the Rodger Wright Centre and an outreach clinic Bourke runs every Thursday at the Christchurch Methadone Programme, it particularly targets injecting drug users who are at highest risk.
“The affiliation with the Rodger Wright Centre and the Methadone Programme helps us find a great niche, because that is our target population,” Bourke says.
“But it’s really important that those who are not on methadone or are no longer using drugs also feel comfortable accessing the clinic.”
Proposed new premises in Cashel Street will see the community clinic sharing a building with the Rodger Wright Centre, but Bourke says separate access will be available for clinic clients.
People who are currently injecting drugs are generally excluded from treatment but Bourke says it is still important for them to be tested and find out their hepatitis C status so they can get information on the disease and their options for management and the treatment process.
“To be open to anybody who has concerns I think is really important, and sowing the seeds early on is good for harm reduction and self-management.”
Charles Henderson says hepatitis C is at “absolutely epidemic” levels and the situation is likely to get worse. Advanced drug treatment means people with HIV can maintain their quality of life for many years. But with hepatitis C, there’s a 50 to 80 percent chance that antiviral therapy will be a ‘cure’, preventing a patient’s progression to chronic liver disease. The success rate depends on what genotype (or strain) of the virus they have.
“The stats are clear; there are currently 32 liver transplants in New Zealand each year. That’s going to increase to 250 by 2030, and it will be predominantly due to hepatitis C infection. It’s such a nasty, pernicious virus. You might be largely asymptomatic, but a few years down the line, you could be cirrhotic and eventually need a liver transplant.”
Henderson strongly believes the Christchurch Hepatitis C Community Clinic is delivering a valuable service and says the trial has been a success despite huge disruption caused by two major earthquakes and the loss of its original building.
“By attaching a health clinic to a needle exchange and working with other agencies like GPs, the Community Alcohol and Drug Service and the hospital, you’re doing a lot of good for a reasonable amount of dollars, so it’s
a good investment.”
However, the clinic – which won a second runner-up award in the community-based section of the Canterbury District Health Board’s (CDHB’s) Quality Improvement and Innovation Awards last year – is only assured of CDHB funding for 1 more year, and its long-term future is unclear.
The Ministry of Health is currently investigating ways of improving hepatitis C services around the country, with a summary report due from the Hepatitis Foundation of New Zealand in March next year covering a wide range
of hepatitis C issues. A Ministry spokesperson says it is reviewing the evaluation report of the Christchurch clinic by the National Centre in HIV Social Research, and the findings will feed into future planning for the provision of hepatitis C services.
But he says there is no expectation the hepatitis C clinic model piloted in Christchurch will be rolled out as a national solution for hepatitis C services in New Zealand.
Bourke says providing early diagnosis, management and the option for antiviral therapy is paramount in order to make headway in tackling this disease. She believes the community clinic provides the most effective model for Christchurch, but other centres may need to adapt to local circumstances.
“We’ve set up a benchmark model that can provide a framework for future improvements in hepatitis C services.”
Richard* says he would not have found out he had hepatitis C if he hadn’t visited the Christchurch Hepatitis C Community Clinic last year.
A friend who worked at the Rodger Wright Centre Needle Exchange suggested he go to the community clinic and get checked out, and his test results came back positive. He was an injecting drug user about 20 years ago in Australia but wonders if he might have been infected by borrowing a friend’s disposable razor about 5 years ago.
Before his diagnosis, he had experienced headaches but no other symptoms that would have made him suspect he had hepatitis C. He had been a patient of the same GP for about 10 years and says, despite telling him he had the antibodies for hepatitis C, the doctor had not suggested further testing or treatment.
“He hadn’t really done anything. It’s not until I went to the hepatitis C clinic that things started happening. They gave me heaps of info and got me on the course [of treatment]. Otherwise, I wouldn’t have known I had it until it actually bowled me over… I can see why they call it the silent killer.”
Richard has been having antiviral treatment – a combination of pegylated interferon and ribavirin – for about 5 months and will find out in a few weeks if it has been successful.
He says testing should be more widely available so that people find out their hepatitis C status as early as possible. He highly recommends the community clinic to other people.
“They don’t look down their noses at you like a lot of people do. They take you for what you are, not what you’ve done. They can’t do enough for you, and they’ll make you a cup of coffee and put you at ease. It’s not like a hospital or a surgery. It’s a lot more informal.”
* Richard is not his real name.
Until 22 February 2011, Christchurch’s Hepatitis C Community Clinic was housed in a two-storey timber and roughcast building on Lichfield Street in the central city. When the huge earthquake struck, the old building partly collapsed, with one floor toppling one way and the ground floor slumping the other.
Fortunately, Clinical Nurse Manager Jenny Bourke and the clinic’s social worker, Marilyn Brown, were attending a training course elsewhere, but there were two other people inside at the time – New Zealand Needle Exchange Programme receptionist Liz Neho, who worked upstairs, and the hepatitis C clinic’s receptionist, Micky Ingram, on the ground floor.
Ingram remembers everything around him lurching sideways accompanied by the sound of timber in the building being ripped apart. He managed to wrench open the front door, which was leaning sideways at a surreal angle, and found himself kneeling on the street with Liz behind him. She had somehow bumped down the stairs and landed outside.
The badly damaged building had to be demolished, and for several months, the clinic operated temporarily from a Portacom on the empty site, with files stored in a staff member’s living room. Bourke says the situation wasn’t ideal, but despite the disruption, the number of clients has actually increased since the quake.
“Even though we lost our building, it was as if people’s psyche was, ‘We’ve survived this, we want to continue to survive,’ and that seems to have kept going because we’ve had more and more new clients.”
Despite the loss of important equipment, including computers, resources and some records, important patient files were able to be salvaged from the old building before it was knocked down. In October, Bourke managed to find a new short-term home for the clinic that is close to the central city. Posters at the Rodger Wright Centre Needle Exchange publicise the clinic’s new location, and while walk-ins off the street are not as common, Bourke says most clients hear about it through word of mouth.
By the end of the year, the clinic will have a new central city location in a building on Cashel Street it will share with the Rodger Wright Centre Needle Exchange, which also lost its former home in the quake.
Hepatitis is inflammation of the liver caused by one of several viruses – hepatitis A, B, C, D or E. The hepatitis C virus is carried in the blood and can only be passed on through blood to blood contact – including sharing of needles and drug equipment during injecting drug use, non-sterile tattooing and body piercing equipment or at birth from a mother with hepatitis C.
It is estimated there are up to 50,000 New Zealanders infected with the virus, and only a quarter of these people are aware they are carrying the disease. It often progresses slowly over many years without noticeable symptoms, but common signs include fatigue, nausea and abdominal pain.
Chronic hepatitis C can lead to years of ill health and reduced quality of life. Left untreated, it can cause damage to the liver that may progress to cirrhosis and, in some cases, eventually lead to liver cancer or liver failure.
For people who are infected through injecting drug use, the risk of cirrhosis is 20 to 30 percent, and 5 to 10 percent of those will die or need a liver transplant for liver failure or liver cancer.
Liver cancer from hepatitis C is increasing rapidly in New Zealand, from one case in 1995 to 29 in 2007, and chronic hepatitis C is now the leading cause of liver transplant operations. The cost of a transplant is about 10 times the $25,000 cost of treating someone with hepatitis C.
An estimated 50 percent of all New Zealanders with chronic hepatitis C infection need to be treated, and 30 percent need to be cured to avoid the expected doubling in numbers of hepatitis C-related liver cancer and liver failure by 2030.
There is no vaccine for hepatitis C, but treatment with antiviral medication can help prevent progression to chronic liver disease.
More advanced drug treatment for the virus – called directly acting antiviral treatments (DAAs) – is expected to be available in New Zealand in 2015, although funding through Pharmac has not been confirmed. These drugs have higher cure rates and shorter treatment times than the antivirals currently used in combination – pegylated interferon and ribavirin.
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