Complementary medicine: the long and short of it The benefits of coffee Hep C goes viral: online chat forums go live
Spring 2012 Edition 02
talkinghep This second edition of talking hep C comes at an exciting time. We are pleased to announce the official launch of our integrated hepatitis C programme in four district health board regions; the Bay of Plenty, Wellington, Wairarapa, and Hutt Valley. All four DHBs have agreed to take part in this initiative to provide better access and services for those diagnosed with, or at risk of, hepatitis C. Limited services, including FibroScan速 liver assessments, and community nurse consultations are already underway in the Bay of Plenty, with the full programme to be launched on September 01. So far it has been rewarding to receive positive feedback from both patients and members of the wider community who are dealing with aspects of the new programme. As we move into 2013, the programme will rapidly expand into the wider Wellington region with two community nurses set to be based in the area. As the programme develops, delivering improved services to more patients, it is providing the impetus for a national programme of the same calibre. In the next few weeks staff from The Hepatitis Foundation of New Zealand will be attending the 8th Australasian Viral Hepatitis Conference in Auckland. The conference will reveal the latest research updates in the fast-moving world of hepatitis C research - see page 18 for research news. Now the real work begins to educate and inform New Zealanders about hepatitis C, and to encourage individuals to get tested, diagnosed, assessed, and cured of this chronic condition which affects approximately 50,000 New Zealanders.
John Hornell Chief Executive Officer The Hepatitis Foundation of New Zealand
Keep up to date and join the conversation ... www.hepatitisfoundation.org.nz
Publisher: The Hepatitis Foundation of New Zealand Editor/Design/Production: Clare Chapman Editorial Contributors: Professor Ed Gane Dr Frank Weilert Nicola Caine Proofreading/Subediting: Matt Walker Editorial Acknowledgements: Hepatitis Research Review Issue 10 - 2012 www.researchreview.co.nz Website: www.hepatitisfoundation.org.nz Mailing Address: PO Box Box 15 347 Tauranga New Zealand Phone: 64 7 579 0923 Hepatitis Helpline 0800 33 20 10 Contact talkinghepC: firstname.lastname@example.org
Talking hep C is a quarterly publication, released in Summer, Autumn, Winter and Spring. For more information about publication dates, contributions or advertising, email email@example.com. The views expressed in this magazine are not necessarily the views of The Hepatitis Foundation of New Zealand, or any of the contributors to this publication. Some of the people shown in this magazine are taken from online image libraries such as www.shutterstock.com. The people in these images have no connection to hepatitis.
The Hepatitis Foundation of New Zealand is a charitable trust governed by a board of trustees.
While the publisher is happy for content from this publication to be reprinted, please seek permission from The Hepatitis Foundation of New Zealand before doing so.
The Foundation is currently working in partnership with the Ministry of Health to improve hepatitis C services in New Zealand.
Any information that is reprinted or reproduced must acknowledge talking hep C, and the edition number and date. This does not extend to images.
news.....................................................................4 New hep C programme launched in four regions
feature: Coffee and hepatitis C.....................8 feature: Community awareness low.........9
news.....................................................................10 personal story...................................................11 The benefits of coffee
9 Hep C community awareness low
16 Complementary medicine: the long and short of it
personal story..................................................12 project update.................................................13 profile: Ruth Mangnall...................................13 nurseâ€™s column: Nicola Caine.......................14 all that jargon.....................................................15 q and a..................................................................15 feature: Complementary Medicine............16 research................................................................18
Taurangaâ€™s infectious diseases specialist talks HCV
introducing: Dr Kate Grimwade...................19 contacts and support..................................... 20
news Balloons float over the Beehive to mark every Kiwi living with hepatitis For the crowd who stood watching 1000 balloons float away over the Beehive at the World Hepatitis Day event in Wellington, hepatitis is a word with a lot of meaning. For some, it is a chronic disease they are still battling, for others, it is a condition they have successfully treated and cured. But for everyone who has experienced hepatitis, it is a word and disease the public needs to be far more aware of. With the aim of doing just that, The Hepatitis Foundation of New Zealand organised an event outside the Beehive to mark World Hepatitis Day. In front of a crowd of hepatitis patients, medical professionals and the public, 1000 balloons were released, each balloon signifying 120 New Zealanders who live with chronic hepatitis B or C. Associate Health Minister, Hon Jo Goodhew, spoke at the event of the need to bring attention to viral hepatitis. “I want to being attention to viral hepatitis, to turn the disease from unknown, undiagnosed and untreated, to known, prevented, tested and treated,” Ms Goodhew said. “Chronic hepatitis can be prevented; it is treatable, and hepatitis C is curable in most cases. Yet despite this, hepatitis remains the leading cause of liver cancer and liver transplantation in the world. “Now is the time to beat heptitis. We have a long way to go, but we are heading in the right direction.” New Zealand Liver Transplant Unit director Professor Ed Gane said most of the 150,000
New Zealanders living with chronic hepatitis B or C were in the prime of their lives. “Almost all of the deaths last year from hepatitis B or C would have been prevented by freely available anti-viral treatment,” he said. “However, only one in three New Zealanders with viral hepatitis are aware of their infection, and only one in 10 have been treated. “The only way to prevent the huge health, social and economic burdens associated with hepatitis will be through better public awareness, earlier diagnosis, and better access to more effective treatments. “To quote the slogan of the Hepatitis C Programme, Know It, I I want to ... turn the disease from Test It, Treat It.” unknown, undiagnosed The Hepatitis Foundation of New and untreated, to known, Zealand CEO John Hornell said prevented, tested and the event was a chance to raise treated. awareness about hepatitis on a -Hon Jo national level. Goodhew “World Hepatitis Day is an annual event which we will continue to mark as a way to help raise awareness in New Zealand,” Mr Hornell said. “Even though hepatitis B and C affect so many New Zealanders, awareness is very low. “The Foundation is working in partnership with the Ministry of Health to address this issue. “The pilot programme we have recently launched in the Bay of Plenty and wider Wellington regions aims to improve access to, and uptake of, hepatitis C testing, assessment and treatment,” he said.
news Three minutes, one drop of blood: the future of HCV diagnosis? A test that will detect HIV, hepatitis B, and hepatitis C from one drop of blood and have the results ready in three minutes is being developed in the United States. MedMira was recently awarded a United States Army medical research contract to develop and commercialise a rapid test capable of the simultaneous detection of hepatitis B and C, and HIV. The rapid test developed as part of the contract will be used on the frontline in situations where emergency blood transfusions are needed. “A multiplexed test for transfusion-transmitted diseases provides an enabling technology that will be used to mitigate risk in austere environments where emergency
blood collections are necessary to save lives of severely wounded war fighters,” U.S. Army Medical Materiel Development Activity’s Colonel Richard Gonzales said. As part of the contract the US Army will fund all development costs and fees in obtaining a US Food and Drug Administration (FDA) premarket approval for the test.
Man sentenced to 30 months in prison for hep C stabbing Canada: A hepatitis C-positive man who was found guilty of stabbing his ex-partner with a syringe containing his blood was sentenced to more than two years in prison. In his written ruling, Justice Wayne Dymond said it was a “one-time incident and it was done out of rage ... it does not excuse such behaviour”. The man was sentenced to 30 months in prison.
Milk thistle doesn’t help hep C: study
United States: A study has found milk thistle, which is commonly used as a natural alternative for liver ailments, does not help patients with chronic hepatitis C. The American study, in which 154 patients who had previously failed to respond to interferon-based therapy were given silymarin (milk thistle) for six months, concluded the popular dietary supplement had no benefit for chronic hepatitis C at all. “This was the strongest, most methodologically sound clinical trial to date of silymarin as a treatment for chronic hepatitis C infection, and we found that it had absolutely no effect on serum ALT or levels of the hepatitis C virus,” lead author of the University of North Carolina study Michael W. Fried, MD, said. The study was conducted in conjunction with five other American research centres.
HCV vaccine development breakthrough Australia: Researchers at Melbourne’s Burnet Institute have solved a hepatitis C vaccine mystery. Associate Professor Heidi Drummer (below) and her team have developed a vaccine candidate that protects against a number of HCV strains. “Our vaccine is unique as it contains only the most essential, conserved parts of the major viral surface protein, eliciting antibodies that prevent both closely and distantly related hepatitis C viruses from entering cells, thereby preventing infection,” Associate Professor Drummer said. The vaccine is currently undergoing formal preclinical studies.
news Vitamin B12 improves HCV treatment response: study Italy: Taking vitamin B12 along with interferon-based hepatitis C treatment may increase response rates. A University of Naples study found 72 per cent of patients who had never had treatment before and who were given vitamin B12 acheived a cure, while only 38 per cent of those who did not receive the vitamin responded to treatment. The study also found there was a 41 per cent increase in those with genotype one, which is generally the hardest type of hepatitis C to treat. The patients received standard treatment of interferon and ribavirin, as well as 5000 micrograms of vitamin B12 every month for between six and 12 months. Authors: Nardone G et al
obituary Doreen Herehere McCorkindale One of The Hepatitis Foundation of New Zealand’s long-standing trustees, Doreen McCorkindale, passed away peacefully on 8 August 2012, aged 77. Hepatitis Foundation CEO John Hornell said Doreen would be sadly missed. “Doreen made a huge contribution to viral hepatitis; her passion was chronic hepatitis B in Maori,” he said. Doreen joined the Foundation in 2008. She was also an executive member of the Maori Women’s Welfare League. The Foundation extends its deepest condolences to Doreen’s whanau.
Pegylated interferon may stunt kids’ growth
United States: Children who are treated for hepatitis C with pegylated interferon may experience growth-related side effects, a new study has found. The study found the hepatitis C drug affected weight gain (which was reversible), and height (which remained lower after the treatment finished). Boston Children’s Hospital Liver Transplant Programme medical director and lead study author, Dr Maureen Jonas, said although hepatitis C in children was generallly mild, some cases did lead to cirrhosis and liver cancer. “Treatment of HCV with pegylated interferon and ribavirin is approved for young children and offers the most benefit while liver disease mild,” she said. “However, there are concerns about the potential side effects of pegylated interferon therapy in children.” The study followed 107 children, with an average age of 11, and found some of those on treatment had decreases in height, weight and BMI scores when compared with standard scores. Those treated for 48 weeks or longer had lower average height scores at the two-year follow-up point than when the treatment began. “Additional investigation of growth patterns is needed to determine long-term outcomes so that optimal timing of treatment can be determind for children with chronic HCV,” Ms Jonas said. For more information about this story, and to keep up to date with the latest hep C news, visit: www.hepatitisfoundation.org.nz
New hep C services rolling out across four DHBs The Hepatitis C Project is now underway with services initially getting off the ground in the Bay of Plenty, Wellington, Hutt Valley and Wairarapa regions. For patients, it is a sign of things to come, and a dramatic change to status quo. For those in the Bay of Plenty and wider Wellington regions, the doors are opening onto a range of new hepatitis C services and support. The Community Assessment and Support Programme, which will be operational in the Bay of Plenty on 01 September 2012, and in the wider Wellington region in early 2013, will allow hepatitis C patients access to an unprecedented level of care. As part of the programme, a community hepatitis nurse will be based in each of the regions who will undertake community clinics and home visits. The nurse will take control of each patientâ€™s care, liaising with specialists and other organisations, and providing on-going monitoring and support. Everyone who enrols in the programme will receive an assessment, including a FibroScanÂŽ, which is an ultrasound that can stage liver damage and reduce the need for a biopsy.
Peer support networks will also be set up, and all patients in the programme will be provided with access to an online chat forum, a free helpline service, and a host of other print and online resources. The programme willl initally run for a two-year period, and provide the framework for a national programme. The Community Assessment and Support Programme is part of the wider Hepatitis C Project, which is undertaking a public awareness and targeted testing campaign, work in prisons, data gathering and analysis, and broadly aiming to improve hepatitis C services in New Zealand. The project is a partnership between the Ministry of Health and The Hepatitis Foundation of New Zealand. To keep up to date with the latest news about the Hepatitis C Project, visit: www.hepatitisfoundation.org.nz
The Hepatitis C Project from a clinicianâ€™s point of view
Dr Frank Weilert looks at the changing medical landscape for hepatitis C patients in New Zealand The idea of a targeted testing programme for hepatitis C has always been on the wish list of clinicians dealing with this treatable infection that is resulting in such devastating consequences. We have watched our Australian counterparts enrol hundreds of thousands on a national database in order to accurately identify and follow those who have HCV. New Zealand has also shown that running a screening and surveillance programme for hepatitis B creates long-term benefits for those enrolled. I have been a clinician in the secondary care setting for over 10 years and know the heartbreak of delayed diagnosis, and the joy of curing someone with chronic hepatitis C. The pilot programme will deliver a vital link between
the affected individual and the care they deserve. We must identify not only those who are keen to be tested, but also raise awareness about the many thousands of undiagnosed carriers. We are already witness to the spiralling health costs associated with cirrhosis, liver cancer, and liver transplantation. Surely we can do better by offering testing, assessment, treatment and surveillance. The pilot sites will not only strengthen the proof of concept, but allow national funding decisions based on real solutions for a community long-neglected and stigmatised. Hepatitis C affects approximately 50,000 New Zealanders. With effective processes this should be an epidemic we can conquer within our generation. page 7
Coffee’s role in fighting hepatitis C Despite the common perception that coffee isn’t good for you, researchers are linking its consumption with various health benefits. But what we do know about coffee and hepatitis C?
No beneficial link has been made with drinking green or black tea (which also contain caffeine). The link between slowed disease progression and coffee is most pronounced in those who drink more than two cups of coffee per day.
A freshly made cappucino may be just what you need if you have hep C. And if you’re having treatment for the virus, drink all the coffee you like; it may help your body to respond better to the treatment. Researchers around the globe are slowly linking coffee to many health benefits, including a reduced risk of liver cancer, a lower chance of liver damage progressing to fibrosis (the most advanced stage of damage), and an overall slower rate of hepatitis C disease progression. The findings are specific to coffee, not caffeine, and do not include other beverages containing caffeine such as cola.
In New Zealand, patients are now recommended to drink more than five cups of coffee per day to try to reduce and slow the progression of hepatitis C-related liver damage. A preliminary study analysing the effect of coffee in those who were undergoing interferon-based hepatitis C treatment, found those patients who drank three or more cups of coffee per day were twice as likely to respond to the treatment than non-coffee drinkers. Although the link between coffee and treatment success rates was strong, more research needs to be done to verify these initial findngs.
What’s the difference between hepatitis A, B, and C? Hepatitis A (HAV) • • • • • •
HAV is transferred through contact with the faeces of an infected person Thorough hand washing can stop transmission HAV infection is rarely fatal Recovery generally takes 4-8 weeks Treatment is often a balanced diet, rest and avoidance of alcohol There is a vaccine available
Hepatitis B (HBV) • • • • •
HBV is the most common liver infection in the world It is spread through the transfer of blood and other bodily fluids It can lead to liver scarring, liver failure, and cancer if untreated There is a vaccine for HBV, and treatments are available HBV is 100 times more infectious than HIV
Hepatitis C (HCV) • • •
HCV is transferred by blood-to-blood contact It can lead to liver scarring, liver failure, and liver cancer if left untreated There is no vaccine for HCV, but there are effective treatments available HCV is a slow-progressing disease; most people don’t notice symptoms for 20-30 years after infection
feature New Zealanders unaware of hepatitis C transmission, risks
Nearly 40 per cent of respondents in a recent survey believed there was no cure for hepatitis C. While nearly 70 per cent of New Zealanders have heard of hepatitis C, most are unsure how the disease is transmitted, how to prevent it, and whether treatment is available. In a recent survey, commissioned by The Hepatitis Foundation of New Zealand and conducted by Research First, it was evident that many New Zealanders remain largely unaware of hepatitis C. The survey used a nationally representative sample of 1389 participants, aged 15 or over, from the Bay of Plenty, Wellington, and Wairarapa regions. Only 30 per cent of respondents were able to correctly identify blood to blood contact as the way the disease is transmitted. Transmission through the shared use of drug injecting equipment, which is a major risk factor, was identified by just 12 per cent of participants. Another 18 per cent of respondents incorrectly believed hepatitis C could be contracted through saliva, and 16 per cent thought it could be sexually transmitted; the risk of sexual transmission is so low that hepatitis C is not classed as a sexually transmitted disease. It can only be sexually transmitted if blood to blood contact occurs. Those surveyed were unsure what symptoms were associated with hepatitis C beyond jaundice and tiredness. Despite about two thirds of the people who undergo hepatitis C treatment in New Zealand achieving a cure, only 30 per cent of the population were aware it is possible to cure hepatitis C, with 40 per cent believing it is not possible, and a further 31 per cent saying they did not know. On a positive note, the survey highlighted little public stigmatisation of those with the disease in New Zealand. It suggested the population is, in general, not judgemental about those who have hepatitis C. The Hepatitis Foundation of New Zealand’s Hepatitis If you wou ld like to h elp us raise awareness about hepat itis C, visit www.hepat itisfoundatio n.org.nz.
believe there is no cure for hepatitis C
C Project manager Dr Kelly Barclay said the goal over the next ten years was to significantly increase public understanding of hepatitis C, and encourage those with the disease to access testing and care. “This survey provides a baseline against which to measure future changes in public awareness of hepatitis C. “We are launching a concerted campaign to increase awareness and address the level of understanding about this disease in New Zealand in the coming years.”
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Hepatitis C goes viral H epatitis C has a new face in New Zealand with the launch of hepCentral, an information-rich online platform at www.hepatitisfoundation.org.nz. Linked to this dynamic site is a range of social media including facebook, twitter and youtube, enabling you to keep up to date with hepatitis C how and when you please.
In conjunction with the launch of the new Hepatitis C Programme, hepCentral went live this winter. Weeks after its launch thousands of people were utilising its wide range of resources. Aimed at providing interactive information, news and resources for the general public and the hepatitis C community, the site also has a section for health professionals where patient resources, and general information about hepatitis C is available. As well as practical information, advice, links to support groups, and online forums, the site features patient stories, and an online risk test to take if you think you may be at risk of having Sick of reading hepatitis C. about hep C? Listen to the new podcast series instead!
“The Foundation is working hard to ensure hepCentral meets the needs of the hepatitis C community in New Zealand, and provides an information-rich online platform for the general public and those who think they may be at risk,” Hepatitis C project manager Dr Kelly Barclay said. “Whether you are a community organisation subscribing to our RSS feed to keep up to date with the latest news, or a person worried about whether you might be at risk, this online community is the place to be.” The Hepatitis Foundation also launched facebook and twitter applications recently to ensure the public can choose how they keep up to date, whether it is with a tweet, liking a post, or joining the conversation.
with other people who have had similar experiences...
Chat forums are now live! To have a chat, ask advice, and read about other peoples’ experiences with hep C, visit: www.hepatitisfoundation.org.nz/forums
or no particular reason on an afternoon in August 2009, Gregory Prince decided to do “the good thing”. He finished work early and had a bit of spare time. “I drove past the blood place and I thought I would do the good thing and give blood,” he said. “A couple of days later I got a letter saying they had found some disease. “So I went back and had another test and they told me something was definitely wrong, but at that point they wouldn’t tell me what. “That’s when your mind starts spinning,” he said. “Then they told me a couple of days afterwards it was hepatitis C. I didn’t understand much about it at all.”
I have probably had hepatitis C for about 30 years now.
“My main reason for not doing it so far is that I feel healthy and I just wonder whether I should put myself through it just now. “I’ve had scans and everything as well and I was told everything was normal and they couldn’t see any abnormal cells. “I understand that, yes, things can degenerate quickly but I have probably had hepatitis C for about 30 years now. “At the moment I’m feeling healthy and happy apart from a few aches and pains which I’m putting down to age and doing a physical job. “I’m maintaining a healthy lifestyle, taking natural health products, and having three-monthly blood tests. “I’m loathe to start the treatment at the moment. I’m still taking time to find out more about it and will hopefully get the chance to talk to people who have been through it to get an on-the-ground perspective of how it might be,” he said. Gregory, 53, is originally from Zimbabwe but has lived and worked in Tauranga for nine years. He and his wife have three adult children and one grandchild.
Not knowing when or how he contracted the virus, Gregory went to his GP and had further tests. “Then I went on the waiting list to see the doctor at the hospital. It took about year or 18 months to get in to see her. “In the meantime I had done a lot of reading about hepatitis C. “The worst part about it was I felt very healthy. I have always done a physical job and been active. “I have had a clean life. Although I’ve had my fair share of booze and parties, I’ve never injected drugs intravenously or anything like that. “So when I got to see the doctor we tried to work out where I got it from.” Gregory had an operation in 1986 before donated blood was screened for hepatitis C. “I lost a lot of blood and had a blood transfusion,” he said. In October last year Gregory had an appointment with the specialist treatment nurse at Tauranga Hospital. “She laid it all out, what side effects you can have and that sort of thing if you do the treatment. “My initial reaction was, yes, let’s do it. “But when we got home, it was quite a slap in the face. You realise that it actually is quite a serious thing,” he said. “I took the prescription home and all the information about it, but I never started the treatment.
personal story “I think it was probably 1988. It was a shared needle. “I was in London then, and didn’t find out until twenty years later” 56-year-old David Murphy said. “I’m bipolar and I was going to the doctor - they take a lot of blood tests when you are bipolar. And when they got a test back for something else they told me my liver wasn’t functioning as well as it could,” he said.
“When I got to London you could buy needles and syringes and that sort of thing form the chemist so I always did that. “But once I really wanted to have the stuff. I don’t know what I was thinking, and it was already too late. I shared a needle,” he said. Although David stopped drinking when he was told he had hepatitis, the diagnosis stopped him in his tracks.
“It was funny because I had exhibited no signs at all. Every other person I have spoken to about hepatitis C has felt run down, but I didn’t.
“I went through quite a bit of denial for a while and I found my doctor to be a little cagey. I wasn’t offered treatment until I asked if I could have it,” he said.
“I wasn’t drinking to excess before I found out; I was just having a beer after work, that sort of thing.
“My brother had hepatitis C and had gone through treatment as well, so it was really good to have him there to get me through.
“But I just had to stop drinking from the day I found out I was hepatitis C positive. I just thought, that is the end of that, and stopped.”
“He was really honest about his experience with treatment. He told me it wasn’t a picnic.
David thought he was a very careful drug user and was initially shocked when he found out he had hepatitis C.
“I’m a gardener so my job is physical, particularly in the summer, when I was started the treatment.
“I was really meticulous most of the time.
“I gave my boss a lot of warning that I was going to have the treatment and said that I probably wouldn’t feel that well some days.
“There are a lot of lawns to mow, and that sort of thing,” he said.
“It was the injection that really knocked you around. It takes about a day or so and then it hits you and you just feel really run down.” David’s energy levels were very low throughout the treatment, and he developed a cough he couldn’t knock. “When I finished it all my energy came back quite quickly,” he said. “It was hard but it wasn’t as difficult as I thought it would be. “I’m still being monitored but the first blood tests have not detected the virus in my system,” he said.
“I’m free now. I think I’m lucky to have the results I have had so far, because I’ve got friends to this day who weren’t so lucky.
“It was unfortunate how I got hep C in the first place. But life is too short for regrets. If you look backwards ... well you can’t. You just have to look forward all the time.
“You can’t un-ring the bell.”
David lives in Brooklyn, Wellington. He had genotype two hepatitis C.
Hep C work in prisons gets underway As the Hepatitis C Project gets off the ground in the community, a plan is rapidly taking shape for the project’s prison component to get underway. An inital meeting of the Prisons Working Group was held in late August in which preliminary steps for scoping and research were addressed. Prisons Working Group coordinator Matt Walker said the group was comprised of Department of Corrections staff (clinical managers and nurses), local medical consultants and specialists, and representatives of The Hepatitis Foundation of New Zealand. “Initially the prison component of the Hepatitis C Project will focus solely on Rimutaka Prison in the Wellington region,” Mr Walker said. “The idea is to identify and provide support for those
who need it in the prison community. “Prisoners who have hepatitis C will be offered the same level of support and access to on-going followup as those in the community,” he said. “The operation at Rimutaka Prison will eventually provide the impetus for a national roll-out of the prison strategy.” “Our aim is to involve prisoners in the development process as much as possible and ensure their input is included in the development of this strategy.” The Working Group is set to meet again shortly to develop the next stage of the prison programme. More information about the Hepatitis C Project and its prison component is available at: www.hepatitisfoundation.org.nz
profile New Zealand’s newest hepatitis nurse enjoys a fresh focus
“I’m here just to help people get through,” she said. “One of the most rewarding parts of the job is telling people they have cleared the virus. “
Ruth Mangnall: Hepatitis Nurse, Wellington Hospital
Ruth Magnall wanted focus in her job. Last year she got that focus by taking on her new role as hepatitis nurse at Wellington Hospital. While she may be the country’s newest hepatitis nurse, her career in nursing spans nearly a decade. Since November last year, Ruth has been running hepatitis clinics two days a week in which she currently sees about six patients. “I let people talk when they come in,” she said. “The doctors see the patient first, and then refer them on to me, and we discuss where they are at. “I’m here to help people through, to talk about whether they want to have treatment, and to help them through if they do. “I see my role as more of a support one; assisting patients to manage their treatment and providing advice about how to manage. It can be really hard for some people.
column My name is Nicola Caine and I am the hepatitis nurse at Tauranga Hospital. My work is based in the outpatient department at the hospital, working alongside the infectious diseases and gastroenterology doctors. Together, we see everyone who is referred into the hospital with hepatitis C. If a patient referred to the hospital, I will see them from the first appointment. This first meeting is often where I take the time to explain hepatitis C, starting with the basics, and making sure each patient understands the information being talked about. Ensuring each person has an understanding at a level suited to them is very important in my role. The next stage Walking alongis talking about side people during their treatment options. My treatment journey is a role is to ensure you, as privilege, and a fantastic a patient, have all the part of my work necessary information so that, together with your family, you can make a decision about what is best for you. If treatment is appropriate, I will guide each patient through the often challenging treatment programme. Walking alongside people during their treatment journey is a privilege, and a fantastic part of my work. Sometimes people have heard terrible stories about others undergoing hep C treatment. I try and ensure opinions are balanced with the facts about current treatments and what can be expected. I have an open, honest, no-nonsense approach â€“ probably due to my Yorkshire heritage! Assisting people to manage any side effects they may experience is a priority.
My experience has taught me that although some side effects are common, no two people ever have the same experience while on treatment. Of course, the highlight of any clinic day is giving the final results to a patient six months after treatment has been completed. Seeing the positive transformation in how some people look physically at this time often makes me speechless! I am passionate about my work. The people I have met have been inspiring. I truly believe each and every one of us can, and should, make a difference in the world of hepatitis C simply by helping to dispel the stigma that is sadly attached to this infection. It is vitally important for people to be aware of, and understand, hepatitis C and how it is transmitted. It is only when the virus is understood in the community, that people will be able to make informed decisions about transmission, testing and treatment. Working in the hepatitis field has always been interesting; however, the future is currently very exciting with many improvements in treatment expected. Keeping up to date with these new developments both worldwide and here in New Zealand is vital. I look forward to seeing those of you in the Bay of Plenty region in the future and talking about these exciting new developments.
Nicola Caine Hepatitis Nurse, Tauranga Hospital
SOC reversible resistance
response guide standard of care naive c
all that jargon
viral suppresion Here’s a plain English explanation of some medical jargon, that, chances are, you will have heard your specialist using, or read elsewhere. Sometimes medical terminology can become a barrier to understanding your health. In every issue of talking hep C Dr Frank Weilert will explain a few commonly used terms.
A FibroScan® is an ultrasound method used to determine the level of liver damage. It replaces the need to have a liver biopsy and is able to accurately determine if cirrhosis is present.
Your genotype is the type of hepatitis C infection you have. Apart from cirrhosis, it is the most important part of deciding what treatment to have, and how long your treatment will be.
Cirrhosis is irreversible scarring of the liver. It increases the chances of future complications and liver cancer. Treatment is possible if you have cirrhosis, but long-term follow-up is required.
Are there any terms you would like explained? Send an email to firstname.lastname@example.org.
Q A Q A
I’m concerned about some of the things I have done in the past and think I might be at risk of having hepatitis C. What are the most common ways you can get it?
q and a
There are many ways you can contract hepatitis C. If you have ever been in prison, you are at a high risk of having hep C. Another very common way of contracting the virus is by having medical treatment in a country or region where there is a high prevalence of the virus, for example Eastern Europe, the Middle East or South East Asia. If you received a blood transfusion in New Zealand before 1992 when blood was first tested for hepatitis C, you may also be at risk. For more information about hepatitis C transmission, visit our website www.hepatitisfoundation.org.nz.
If I have treatment for hepatitis C and I get rid of the virus, does that mean it will never come back? No. If you clear the hepatitis C virus after treatment, it does not mean that you can never be infected again. If you participate in high-risk activites, you are at risk of being re-infected.
Do you have a question you would like answered?
Email us at talkinghepc@ hepatitisfoundation. org.nz
The long and short of it:
Complementary medicines and hepatitis C New Zealand liver specialists have long been aware of the dangers of kava, a traditional ceremonial drink of the Pacific Islands. However, as the use of complementary medicines rises, other commonly used herbal remedies have caught their attention. Auckland City Hospital hepatologist Professor Ed Gane and Auckland District Health Board chief pharmacist Sarah Fitt examine some popular complementary medicines and their effects on those with hepatitis C. It is generally accepted that there are two classes of medicine; conventional and complementary or alternative medicines (CAMS). CAMs do not contain restricted or pharmacy-only medicines, and do not require a prescription. They are traditionally produced from plants, and are often mixed or diluted with water, ethyl alcohol, or another substance that is not chemically reactive. General belief is that CAMs are natural, and therefore harmless. This, coupled with the increasing desire for a natural lifestyle, has resulted in an increased use of these products. Those with a chronic disease, those wanting to prevent aging, and those wanting more autonomy and involvement in their healthcare, are particularly likely to use some form of complementary medicine. In Australia, almost half the adult population use a natural supplement; public spending on complementary medicines is estimated at about four times that of the patient contribution for all pharmaceutical medications. In a recent local study (Ryan et al), it was found the majority of people attending hepatitis C clinics in the Auckland region were taking at least one CAM.
In New Zealand, most herbal remedies are exempt from licensing under the Medicines Act 1981. They are classed as dietary supplements and come under the Food Act 1981, which has very limited regulation. Because of this, potential problems with CAMs include the risk of contamination with toxic substances such as heavy metals or pesticides and herbicides. Herbal medicines are also frequently adulterated with prescription medicines to increase efficacy; as a result it may be impossible to identify the actual contents of every product. Common examples of this include diabetes remedies which contain anti-diabetic medicines, rash creams which contain steroids, arthritis remedies which contain aspirin or steroids, and potency remedies which contain Viagra. Other problems with CAMs include possible interactions with conventional medicines, and direct toxicity, including hepatoxicity (liver injury). The most widely used and most serious hepatoxic ingredient found in CAMs in New Zealand is the kawa kawa plant (Maori pepper tree). The root of this plant is a common ingredient of traditional Polynesian medicines, often used by Maori and Pacific Islanders. Kawa kawa is a close relative of piper methysticum, the plant from which kava is made. The following complementary and alternative medicines have been linked to liver toxicity and are particularly dangerous to anyone with chronic hepatitis C: Ingredient Kawa kawa bush tea Kava Black cohosh Germander Chapparral Comfrey Skull cap Shark cartilage
Associated problem/s Acute hepatitis, liver failure Acute hepatitis, liver failure Acute hepatitis, liver failure Slow fibrosis, cirrhosis Slow fibrosis, cirrhosis Acute jaundice Chronic hepatitis Chronic hepatitis
Kava was widely used to treat stress, anxiety, epilepsy, infections, and many other conditions. However, when reports emerged about ten years ago about links between kava and liver failure, the plant’s days as a widely used alternative medicine came to an almost immediate end.
It is important to remember that the risk of liver toxicity from any medicine, both prescribed and complementary, is much higher in someone with underlying chronic viral hepatitis. Now, almost 100 cases of severe liver toxicity, including liver failure and death, have been attributed to kava. It is now banned in many countries including Switzerland, Germany, and Canada. In New Zealand, consumption of tea brewed from the root of the kawa kawa plant has been linked to severe liver failure and death in several patients, all of whom had either underlying chronic hepatitis B or C. Many CAMs are safe, and some may provide specific benefits to people with chronic hepatitis C. Garlic is a common ingredient of CAMs, and is strong in antioxidant activity, which can directly scavenge free radicals. In addition to potentially improving the damage caused by hepatitis C, it is known to reduce blood pressure and cholesterol, and may help to build up resistance to infections.
Ginseng also improves immunity by enhancing the body’s natural killer cells, and may reduce the longterm risk of cancer. St John’s Wort contains hypericum perforatum which has anti-depressant properties and has been used as an aid to reduce the depression associated with interferon treatment. However, St John’s Wort should never be used by people who are undergoing treatment with telaprevir or boceprevir because it reduces their effectiveness. It is important to remember that the risk of liver toxicity from any medicine, both prescribed and complementary, is much higher in someone with underlying chronic viral hepatitis. For this reason, any patient with chronic hepatitis C should always discuss the use of any complementary or alternative medicine with their doctor or pharmacist.
Rongoa Maori for the liver Bay of Plenty-based Maori Rongoa expert Rob McGowan said there were many plants used for the liver in traditional Maori medicine. “But it is important to see these as a supporting treatment to other medicines,” he said. Maori Rongoa remedies for liver include the following plants, generally prepared as tonics or teas: • • •
Raurekau (caprosma grandifolia) Kumarahou (pomaderris kumeraho) Tanekaha (phyllocladus trichomanoides) page 17
research Tiny molecule may offer new way to treat liver cancer
Smokers at increased risk of hepatitis relapse
United States: The loss of a tiny RNA molecule in liver cells may cause liver cancer, and the restoration of that molecule may slow the cancer’s progression and offer a new treatment for the disease. An Ohio State University animal study found liver cells that lacked a molecule called microRNA-122 developed fat deposits, inflammation and tumours resembling liver cancer. When researchers artificially restored the microRNA-122 to nearly normal levels in liver cells, it dramatically reduced the size and number of tumours. Tumours on those with the restored molecule made up eight per cent, on average, of the liver area, while those in the control group saw tumours making up, on average, 40 per cent of liver area. “These findings reveal that microRNA-122 has a critical tumour-suppressor role in the healthy liver, and they highlight the possible therapeutic value of microRNA-122 replacement in some patients with liver cancer,” study lead Dr Kalpana Ghoshal said. Authors: Ghoshal K et al
Canada: Tobacco may adversely effect the immune system’s response to liver transplants as a result of viral hepatitis. A McGill University study found those who smoked, or used to smoke, were more likely to have complications as a result of transplant, and were more likely to redevelop hepatitis less than a year post-transplant, compared to non-smokers where it was close to five years post-transplant. The study analysed data from 444 patients who received liver transplants over a 14-year period. Authors: Gahli P et al
New drug toted as potential treatment for fibrosis: study
Liver stiffness may predict liver failure Spain: Liver stiffness, measured by transient elastography (ultrasound technology such as a FibroScan®) may predict liver failure or cancer in hepatitis C patients who are co-infected with HIV and have cirrhosis, providing a more advanced detection of disease severity. A University of Seville study analysed 239 patients and found eight per cent of 181 patients with liver stiffness less than 40 kilopascal (kPA) developed liver failure, compared to 29 per cent of 58 patients with liver stiffness greater than 40 kPa. Authors: Merchante N et al
United States: A University of California study has identified a potential new treatment for liver fibrosis, known as a NADPH oxidase (NOX) inhibitor. Researchers found the use of a NOX inhibitor in mice prevented the development of fibrosis, potentially allowing the liver to repair itself. “While numerous studies have now demonstrated that advanced liver fibrosis in patients and in experimental rodent models is reversible, there is currently no effective therapy for patients,” University of California School of Medicine dean and principal investigator David Bremmer, MD, said. “This new study provides important validation of the role of NOX in liver fibrosis, and suggests a NOX inhibitor could provide an effective treatment for this devastating disease,” he said. Mr Bremmer said the next stage of research would include a clinical trial with the drug in patients with liver fibrosis. Authors: Bremmer D et al
Tauranga Hospital’s infectious diseases specialist Kate Grimwade talks hep C Kate Grimwade is a busy woman. When she spoke to talking hep C, she was 39 weeks pregnant. Her 18-month-old daughter was at child care, and she was buzzing around the hospital, tying up loose ends and chatting to various colleagues, before heading off to get an ante-natal massage, and take a few days off work before the birth of her second child. Kate, who qualified as a doctor in 1995 in Liverpool in the United Kingdom, has had a colourful career in infectious diseases that has seen her travel around the globe. After qualifying in England, she spent four years doing research in a remote South In the next few years African hospital before treatments will change, returning to England providing options and to finish her specialist opening the doors to training. more people. In 2007 she moved to the Bay of Plenty and joined Tauranga Hospital as an infectious diseases specialist. Over the past five years, Kate’s influence has seen a lot change for hepatitis C patients in the Bay of Plenty. “Hepatitis in the Bay is dealt with by the Infectious Diseases and Gastroenterology departments,” she said. “We worked together to develop the hepatitis programme as a combined approach. “Initially we worked very closely with The Hepatitis Foundation. Then, three years ago, Nicola [hepatitis nurse] starting working for us and we now have two infectious diseases specialists and four in gastroenterology, as well as Nicola, and we run special viral hepatitis clinics every week.” “Local clinical trials of interferon-free therapies also
got underway recently, with the results sparking optimism for the future of hepatitis C treatment. “We now have subjects locally on a Phase 3 clinical trial of interferonfree therapy for genotypes two and three,” she said. “Seeing the results has been really exciting ... they are going to change everything over the next few years.” But for Kate, the real rewards of her busy career, are clear. “I am constantly amazed by how patients respond to the challenges that are put in front of them. It really is rewarding to treat this group of people. “And in the next few years treatments will change, providing more options, and opening the doors to more people. “ Dr Grimwade is on maternity leave until February 2013.
contacts and support There are various agencies in New Zealand that can provide you with help and support. The Hepatitis Helpline is a free, confidential service run by The Hepatitis Foundation of New Zealand that provides general advice, information and guidance about hepatitis C, diagnosis, treatment and ongoing care. The Hepatitis Helpline is linked with a number of other agencies, and staff can point you in the right direction if you require any other support or advice regarding issues that are not related to hepatitis C.
Haemophilia Foundation of New Zealand 03 371 7477 www.haemophilia.org.nz The Hepatitis Foundation of New Zealand 0800 33 20 10 www.hepatitisfoundation.org.nz
New Zealand AIDS Foundation 09 303 3124 www.nzaf.org.nz
Community Alcohol and Drug Services 09 845 1818 www.cads.org.nz
New Zealand Needle Exchange Programme 03 366 9403 www.needle.co.nz
Alcohol and Drug Helpline 0800 787 797 www.adanz.org.nz
Christchurch Hepatitis C Resource Centre 03 366 3608 www.hepcnz.org
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Hepatitis C Resource Centre Otago 03 477 0407 www.hepcnz.org/otago