talkinghep Winter 2016: Edition 17
fi e r ’ y e Th
! e r e h nally
• Personal story: ‘Harvoni saved my life’ • Telling others about your diagnosis • World Hepatitis Day: 28 July
Pharmac funds new generation hepatitis C treatments •
As of July 1, Harvoni was funded to treat hepatitis C patients with severe liver disease, and Viekira Pak for the treatment of genotype 1. Those with genotypes 2, 3, 4, 5 and 6 continue to wait patiently for a cure.
Hi Everyone, Welcome to the 2016 winter edition of talkinghepC. Winter has taken a long time to arrive this year. And like winter, so too has the arrival of the new direct-acting antiviral (DAA) medications for hepatitis C. We are pleased they are finally here. As of July 1 Pharmac has funded Viekira Pak and Harvoni. Viekira Pak is available through prescription for people with Genotype 1 hepatitis C. At the moment Viekira Pak is available through specialists only, but from October 1 GPs will be able to prescribe it. Harvoni is available to people with advanced liver disease and liver failure. Hospital specialists are able to request this medication on your behalf. Those registered with The Hepatitis Foundation and who have genotype 1 of the virus, will receive a notification in the mail about how to obtain treatment. The Hepatitis Foundation is working hard to get accurate information out to both specialists and GPs in order to enable safe and accurate prescribing and monitoring of this treatment programme. We appreciate your patience as doctors around the country make space in their clinics to discuss treatment with patients. The elephant in the room is the lack of publically funded DAA treatment for people who DON’T have genotype 1 infection. During the consulting period earlier this year, The Hepatitis Foundation made detailed submissions to Pharmac regarding this issue. At this point in time we don’t know when Interferon-free treatment will be funded for people with genotypes 2, 3, 4, 5 and 6 infection. The Foundation acknowledges the frustration you may feel, and advises that we are continuing to support Pharmac as it considers options to fund other treatments. Finally I would like to briefly introduce myself. I am very excited to be working as clinical director at The Hepatitis Foundation. Here I work alongside the knowledgeable Dr Chris Moyes to ensure we provide the most up-to-date and evidenced-based care to all people in New Zealand living with hepatitis B and C.
Alex Lampen-Smith Clinical Director The Hepatitis Foundation of New Zealand
Publisher: The Hepatitis Foundation of New Zealand Editor/Design/Production: Jasmin Brown-Duurentijdt Millie Freeman Editorial Contributors: Professor Ed Gane Dr Frank Weilert Website: www.hepatitisfoundation.org.nz Mailing Address: PO Box 647 Whakatane 3158 New Zealand Phone: +64 7 307 1259 Hepatitis Helpline: 0800 33 20 10 Contact Talking Hep C: firstname.lastname@example.org The Hepatitis Foundation of New Zealand is a charitable trust governed by a board of trustees. The Foundation is currently working in partnership with the Ministry of Health to improve hepatitis C services in New Zealand. 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 publication’s contributors. 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 or the Foundation. 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. Any information reprinted or reproduced must acknowledge Talking Hep C, and the edition number and date. No images are to be reprinted.
Pharmac funds two new hepatitis C treatments
DAAs funding announcement........................... 4
PERSONAL STORY: CRAIG
There is no doubt in my mind. Harvoni saved my life.
The International Liver Congress...................... 8
Personal story ......................................................... 12
Feature: Hepatitis C and disclosure..................... 14
Feature: Joint pain.................................................... 16
Grant offers some advice
World Hepatitis Day................................................ 18
Welcomes are farewells.......................................... 19
Contacts and support............................................ 20
DAAs Viekira Pak and Harvoni Quick to take advantage of new, fully-funded hepatitis C medicines, an estimated 127 people throughout the country are part-way through their 12-week treatment plan of Viekira Pak. Last month Pharmac approved funding for the latest direct-acting antiviral medicines Harvoni and Viekira Pak to become freely available in New Zealand from 1 July. Clinical studies indicate that more than 90 per cent of people who take these medicines will be free of the virus after a 12-week course of treatment. Studies also show patients have reported fewer side-effects than older, interferon-based treatment. Hepatitis Foundation Acting Chief Executive Susan Hay, says the funding announcement was a major step towards the Foundation’s goal of eliminating hepatitis C from New Zealand by 2030. “We are delighted to see people who have waited for so long, finally getting the medicine they need to get rid of this terrible disease. We applaud Pharmac for making this medicine freely available in New Zealand to so many patients.” However Ms Hay says the Foundation’s aim is to see all New Zealanders living with hepatitis C – regardless of genotype – have equitable access to life-saving medicines. “Our task is only just beginning. Currently the medication is only available for people with severe liver disease and those with hepatitis C genotype 1. There are many people living with other genotypes of the virus who remain unable to access these state-of-the-art medicines unless they have severe liver disease. We will continue page 4
to support Pharmac as it considers options to fund other treatments.” Pharmac has stated that other new hepatitis C treatments are still an option for investment and that they would pursue these should the opportunity arise. The two new medicines now funded in New Zealand – Harvoni and Viekira Pak – are directacting antiviral agents that interfere with the replication of the hepatitis C virus (HCV). Under the Pharmac plan, Harvoni, made up of Ledipasvir (90mg) and Sofosbuvir (400mg), is being funded for high-priority hepatitis C patients only, ie, patients with severe liver disease, regardless of genotype. Access to funding will be via application to the Hepatitis C Treatments Panel (HepCTP).
Viekira Pak, and Viekira Pak-RBV (which includes the drug Ribavirin), is being funded for people who have genotype 1a or 1b. Both are available via prescription, initially from infectious disease specialists, hepatologists and gastroenterologists; from 1 October GPs will also be able to prescribe. Viekira Pak comprises ombitasvir, paritaprevir and ritonavir, copackaged with the drug dasabuvir. Viekira Pak is taken as three tablets in the morning and one in the evening. More than 50,000 people in New Zealand are living with the disease but an estimated 50 plus per cent have never been diagnosed
become funded in NZ because the virus can go undetected for many years. Ms Hay says the key is to find those people living with the disease so they can access treatment before their health deteriorates. “These funding developments now need to be linked to a national strategy to eliminate the disease within a decade,” she says.
Harvoni saved my life Craig, 59, lived with hepatitis C genotype 1 for more than four decades. Recently, his liver decompensated and he was treated with Harvoni through the New Zealand Liver Transplant Unit. Now he is cured.
Announcement facts: •
Hepatitis C is a viral infection affecting approximately 50,000 New Zealanders, more than half of whom are undiagnosed. Many patients will progress to lifethreatening disease, including liver cancer and liver failure.
From 1 July 2016, Harvoni, Viekira Pak and Viekira Pak-RBV became fully funded in New Zealand (with some access criteria). For Harvoni, access to funding is via application to the Hepatitis C Treatments Panel (HepCTP). Viekira Pak and Viekira Pak-RBV is currently being prescribed by infectious disease specialists, hepatologists and gastroenterologists. From 1 October, once additional support has been put in place, Viekira Pak will be funded on prescriptions written by all eligible prescribers, including GPs.
Both of these treatments are a major advancement in the treatment of hepatitis C, with cure rates of more than 90 per cent with as little as 12 weeks’ treatment.
Pharmac continues to explore more options to widen treatment coverage for those with hepatitis C.
Pharmac is working collaboratively with a number of organisations, including the Ministry of Health, hepatitis specialists and the suppliers of these treatments, to develop training and education resources for general practice.
Craig is ecstatic that others like him can receive access to life-saving treatment. However, he says people with other genotypes of the virus shouldn’t be left behind. “The fact that Ed Gane and the Liver Transplant Unit put me on Harvoni has saved my life. This product works. Everybody should receive a chance to survive. “I would hate to think what it has cost this country to monitor me and look after me in the 42 years that I’ve had hepatitis C. What it has cost this country to put me through interferon, ribavirin, the ultra sounds, MRIs, and the liver specialist appointments. The $140,000 it cost to put me on Harvoni to save my life has got to be a small drop in the ocean compared to that. “It is a lifesaving treatment.” page 5
feature What is Harvoni?
What is Viekira Pak and Viekira Pak-
Harvoni is a direct-acting antiviral agent that interferes with the replication of the hepatitis C virus (HCV) and is effective against all genotypes. Supplied by Gilead Sciences (NZ) Ltd, Harvoni comes in tablet form and is made up of two active substances, Ledipasvir (90mg) and Sofosbuvir (400mg).
Viekira Pak comprises ombitasvir, paritaprevir and ritonavir and is co-packaged with the drug dasabuvir for the treatment of HCV genotype 1a or 1b. Both products are manufactured by Abbvie and come in tablet form.
Harvoni is being funded for high-priority hepatitis C patients, ie, patients with severe liver disease, as follows: • HCV patients with decompensated cirrhosis (all genotypes) • HCV patients pre/post liver transplant (all genotypes) • HCV patients with essential mixed cryoglobulinaemia (a disease causing damage and inflammation of blood vessels). While these patients are the first priority, Pharmac says an application for funding Harvoni for other subpopulations of patients, ie, those in lower priority groups, will remain open.
Ombitasvir, paritaprevir and dasabuvir are directacting antivirals (DAAs), which means they directly interfere with HCV replication and target the virus at multiple steps in the viral lifecycle. Viekira Pak-RBV includes the medicine Ribavirin, and its use depends on genotype and presence of cirrhosis. Both Viekira Pak and Viekira Pak-RBV are being funded for the treatment of chronic hepatitis C genotype 1. Apart from specialist-only prescription until 1 October, there would be no access criteria or restrictions for funded access to these medicines.
Adverse effects in clinical trials
Adverse effects in clinical trials
Viekira Pak and Viekira Pak-RBV
In clinical trials, fatigue, headache and nausea were the most common adverse events reported. When Harvoni was studied with ribavirin, the most frequent adverse drug reactions were consistent with the known safety profile of ribavirin.
In clinical trials, nausea, pruritus (itching), fatigue, insomnia and weakness were the most common adverse events reported.
Medsafe: When not to use these medicines • • • •
Harvoni and Viekira Pak/Viekira Pak-RBV may interfere or react with other medicines or herbal remedies and cause serious side-effects. You must discuss this with your doctor before beginning treatment. Discuss with your doctor before taking these medicines if you are pregnant, think you may be pregnant or are planning to have a baby. You should not breast feed during treatment. DO NOT use Ribavirin if you or your partner are pregnant or planning to have a baby. Ribavirin may cause birth defects or death of an unborn baby. Extreme care must be taken to avoid pregnancy during treatment and for six months after completion of treatment with ribavirin. Viekira Pak is not recommended for patients who have decompensated cirrhosis, which is very advanced liver damage.
feature Global and national prevalence of hepatitis C genotypes HCV genotypes: Global prevalence Graph 1 shows the global prevalence of HCV genotypes. Around 180 million people globally are estimated to be living with hepatitis C. Figures do not include Oceania:
‘What if I do not qualify for the funded treatment?’ Personal importation Hepatitis Director discusses:
Foundation Clinical Alex Lampen-Smith
HCV genotypes: New Zealand prevalence Graph 2 shows the New Zealand prevalence of HCV genotypes, with HCV genotype 1 being the most common (57 per cent). Approximately 20,000 people have been diagnosed with hepatitis C in this country and it is thought a further 30,000 people have chronic hepatitis C who aren’t yet diagnosed with the disease.
In the 2016 Autumn edition of talkinghepC, we discussed personal importation as a means for accessing affordable generic versions of the lifesaving DAAs. Many people in New Zealand have personally imported treatment. In April 2016, Dr James Freeman from the FixHepC Tasmanian Buyers’ Club received a long-standing ovation following his presentation at the EASL Conference in Barcelona, which presented the high cure rates (>90 per cent) of cheaper generic medications. The international liver specialist community recognise the way in which he is helping make generic DAAs available for sufferers of hepatitis C at a fraction of the cost of the branded medications – the approximate cost of a 12-week course of treatment is $2,500. If you are interested in personally importing treatment please ask your GP to refer you to a specialist for assessment to ensure you import the correct combination and length of treatment.
Graph 1 (data sourced from): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4303918/ Graph 2 (data sourced from): https://www.pharmac.govt.nz/news/consultation-2016-05-04-hepatitis-ctreatments
International Liver Congress 2016: The arrival of Perfectovir Written by Professor Ed Gane, New Zealand Liver Transplant Unit, Auckland Hospital.
Professor Ed Gane reports on the 2016 European Association of the Study of the Liver (EASL) conference, held in Barcelona, Spain.
New Developments AbbVie has co-formulated two nextgeneration direct-acting antivirals – the pangenotypic protease inhibitor (ABT-493) and the pangenotypic NS5A inhibitor (ABT-530). Both have very potent antiviral activity across all HCV genotypes (1-6) and against viruses which are resistant to the current Viekira Pak and Harvoni regimens. At previous meetings in 2015, AbbVie presented the earlier studies which selected the ‘NEXT-GEN’ regimen – once daily combination of ABT-493 200mg and ABT-530 120mg without any ribavirin. They have now studied different durations: in patients without page 8
April’s EASL conference will be remembered as the last major liver meeting dominated by advances in the management of hepatitis C (HCV) infection. This was less than five years after the first major presentation of directacting antivirals (DAAs) at an international conference (AASLD) in 2011. The biggest advances at the EASL meeting were the data on two next-generation regimens, designed to both shorten treatment duration across all patient populations and also to rescue the 5-10 per cent of patients who currently cannot be treated by the approved Harvoni and Viekira Pak regimens.
cirrhosis, 12 weeks ‘NEXT-GEN’ cured 97-100 per cent, including the previously difficultto-treat patients infected with HCV genotype 3, who had already failed treatment with pegylated interferon and ribavirin. This same 12-week regimen was then studied in patients with cirrhosis, and cured 96 per cent genotype 1 cirrhotics and 100 per cent genotype 3 cirrhotics.
The duration of treatment was then reduced to only 8 weeks in patients without cirrhosis infected with either genotype 1, 2 or 3. Again the results were stunning – all patients were cured except for three patients who withdrew from the study. Finally, this ABT-493/ABT-530 regimen was studied in what is now regarded as the most difficult-to-treat patients and the only true remaining unmet medical need – those 5-10 per cent of patients who fail currently approved DAA treatment including Harvoni or Viekira Pak. ‘NEXT-GEN’ cured 96 per cent of these patients. The safety profile across the phase II programme is excellent with no specific toxicity and very few drug interactions compared to Viekira Pak.
This ‘NEXT-GEN’ regimen is now being studied in larger Phase III registration studies – 8 weeks for most patients and 12 weeks for cirrhotics and DAA failures. It should become available in the clinic late 2017. Gilead has co-formulated sofosbuvir (NS5A inhibitor) with velpatasvir (NS5A inhibitor) and voxilaprevir (next-generation NS3 inhibitor) into a single tablet regimen. At AASLD, I presented the first clinical results from the small New Zealand Phase II LEPTON study in the very difficult-to-treat patients with cirrhosis and prior interferon non-response. Only 8 weeks of this regimen cured 100 per cent of patients with HCV genotype 1 and HCV genotype 3 infection. At EASL, the results from the larger global Phase II studies were presented by me (treatment-naïve patients) and Dr Lawitz (treatment-experienced patients). In summary, this regimen for 8 weeks cured 95 per cent of treatment-naive patients, including those with cirrhosis, whilst 12 weeks cured 99 per cent of patients who had failed previous treatment, including DAA regimens such as Harvoni and Viekira Pak. Both these next-generation regimens represent the final phase of HCV treatment development – a simple and very safe, once-daily, ultra-short regimen, which can cure all patients without the need for interferon or ribavirin, regardless of HCV genotype or presence of cirrhosis. These ‘Perfectovirs’ will be ideal for GP prescribing without any baseline tests (except a single HCV RNA test) or on-treatment monitoring. They provide the opportunity to eliminate HCV provided we can improve diagnosis rates and
access to DAA therapies. One initiative which has helped improve access to DAA therapies in both high and low income countries has been the increase in generic drugs.
Dr James Freeman presenting at ILC 2016. Photo: Liz Highleyman, hivandhepatitis.com
One of the most popular presentations at EASL was by James Freeman from the Tasmanian FixHepC Buyers Club. He presented the results from 146 mainly Australians and New Zealanders who have been treated with 12 weeks of generic sofosbuvir plus ledipasvir (genotypes 1 and 4) or sofosbuvir plus daclatasvir (genotype 3). The cure rates were 95 per cent for genotype 1, 100 per cent for genotype 2, 90 per cent for genotype 3 and 100 per cent for genotypes 4, 5 and 6, and the safety was excellent, proving that these generic drugs appear to be the real deal. Certainly they provide an option for New Zealanders infected with HCV genotypes 2, 3, 4, 5 or 6 for whom there is currently no funded treatment available.
Now’s the time: Get treated! Written by Dr Frank Weilert, Hepatologist at Waikato Hospital.
The news is out! Pharmac has approved funding for all-oral, non-interferon, direct-acting antiviral medication beginning 1 July, and hospital clinics have already started to treat patients. This is great news and is what we’ve been waiting for. The important thing now is to take the initiative and get yourself into line to be treated as there are a few steps you need to take before treatment can begin.
If you suspect you may be living with hepatitis C (HCV): 1. Make contact with your GP or medical provider to get a hepatitis C blood test (HCV Antibody (Ab) to see if you have been exposed to the HCV virus. 2. If the screening test is positive, your doctor will send off a blood test to see if you are a chronic carrier. This test checks for viral load (VL), and HCV genotype by Polymerase Chain Reaction (PCR) test. 3. If the PCR test is negative, this is good news as it means you have been exposed to hepatitis C in the past and cleared the infection spontaneously (HCV Ab positive but PCR negative). You do not have chronic hepatitis C infection and treatment is not needed. page 10
If you have confirmed chronic infection (positive HCV VL by PCR): If chronic infection is confirmed by these screening tests (or by tests you have had in the past), your health provider needs to ‘stage’ your degree of liver disease prior to treatment commencing. 1. Fibroscan: Your health provider will refer you for a Fibroscan, which is a special ultrasound of the liver to determine the level or ‘stage’ of liver disease.
A Fibroscan is crucial before treatment because it accurately detects whether or not you have cirrhosis (a lot of liver scarring), which is very important to determine the future risk of liver cancer. The degree of liver damage helps us determine what combination of treatment is required and if the treatment has to be hospital clinic-based or if it can be supervised by your GP or community health provider. Fibroscans are provided by a network of trained providers, who will interpret the results for you so that you know what to expect and what long-term screening is required.
2. Education to prepare for treatment: Your health provider will discuss what you can expect during the treatment regime, and provide nutritional and lifestyle advice,
for example, you should aim to eliminate alcohol. This education session should take place at the time of your Fibroscan. What if I have cirrhosis? If you have cirrhosis (or severe fibrosis) your treatment will be managed through hospital clinics as you will require closer observation during this time. You will also require life-long, six-monthly screening (liver ultrasound) for liver cancer even after your hepatitis C has been cured. Treatment options: Pharmac has approved two treatment options, Harvoni and Viekira Pak, which both offer high chances of cure (>95 per cent). All patients with genotype 1 (with or without cirrhosis) are eligible for Viekira Pak, and treatment will be shared between hospital clinics and your local GP. Genotype 1 is the most common variant in New Zealand (around 60 per cent). The second treatment option, Harvoni, is reserved for patients who have cirrhosis and whose liver disease is deteriorating rapidly. There are, however, significant gaps in the funding. Importantly, the funding currently excludes the new treatment options for genotypes 2, 3, 4, 5 and 6 (genotype 3 occurs in 30-35 per cent of patients in NZ) unless you have severe deteriorating liver disease. However, you are still urged to get tested and to prepare yourself for possible treatment as we can expect more funding changes in the coming year. If you are missing out on treatment at the present time do not be discouraged. There are significant developments in new treatments where the genotype no longer matters (called
pan genotypic treatment regimens), which are close to FDA approval. Once this occurs (within the next 6-12 months) these new treatments will be registered in New Zealand. At that time submissions to Pharmac for a change in the funding criteria will be made. However, there may be situations where you cannot wait. If your liver is deteriorating, you may become eligible for Harvoni treatment, which is highly successful even at that stage. Your other options include consideration of self-funding, generic based compounds (through the “buyers club” for example). We encourage you to do this in consultation with your doctor, as the treatment duration and combination of drugs has to be carefully considered. There is a chance that through the generic compounds you may become resistant to one or more of the groups of drugs involved. This will impact your response rate to newer or even current drug treatments. It is best to work together and get the best solution for your hepatitis C – we want everybody to be cured! Take action now! Your GP or health provider will help you to: 1. Confirm – confirm if you have hepatitis C infection by getting a blood test (HCV Ab) 2. Check – check if you are a chronic carrier by testing your viral load and genotype 3. Refer – refer you for a Fibroscan to determine the stage of liver disease 4. Educate – get educated to minimise ongoing damage to your liver 5. Understand – understand what to expect during treatment.
Craig’s story Craig is feeling optimistic for his future. After living with hepatitis C for more than four decades, he has recently cleared the virus with the help of new generation drug Harvoni. Now Craig, 59, is looking forward to regaining his strength and getting back on his mountain bike. However, just a few short months ago he was on the brink of death. Craig had experienced periods of illness ever since he was first diagnosed with the disease in his late teens (see talkinghepC, edition 11 for his earlier story), but last November he started to feel unwell all of a sudden. While he didn’t notice the symptoms straight away, he gradually felt the onset of chronic fatigue, a common symptom of hepatitis C.
if we didn’t do anything I was going to die.” For the third time in his life, Craig had to leave work because of the virus, and this time it meant shutting down his pest-control business. Toward the end of January Craig was sent to the Auckland Liver Transplant Unit. Specialists Professor Ed Gane and Dr Margaret Johnson put him on a 12-week course of Harvoni. He was one of the 100 New Zealanders who received treatment from Gilead and BMS between 20152016 in order to prevent liver transplantation and death. Craig is now clear of hepatitis C and is very grateful for Dr Johnson’s and Professor Gane’s efforts. “They don’t just do it for a job, they do it because they care. It’s really nice to have those people on your side.”
“There is no doubt in my mind. Harvoni saved my life.”
“By early January I was struggling to get through a day’s work. That’s when I rang my doctor and asked for a blood test because I didn’t feel right. When my doctor received my blood test results I was admitted to hospital. My liver had decompensated. It was a huge shock. Up until November I was running a million miles an hour. I expected to continue living like I was until such time as my liver failed. I just didn’t think it was going to happen just like that.” By mid-January Craig’s liver condition had worsened. “I hit a wall. It got to the point that page 12
Craig began feeling better after just five days of treatment. While he experienced ascites (accumulation of fluid in the peritoneal cavity, causing abdominal swelling) and oedema (excess of watery fluid collecting in the body), he says once those issues were dealt with he felt better day by day. “I almost feel like there isn’t a hell of a lot wrong with me, compared to how sick I have been earlier this year. I say to people that I’m half the man I once was but twice the man I have been in a while.”
Craig was on the waiting list for a liver transplant, but no longer needs one because his liver is recovering from the virus and beginning to repair itself. “There is no doubt in my mind. Harvoni saved my life.”
some medical professionals looked at him differently because he had hepatitis C, he says people are starting to realise that hepatitis can affect everybody and there is less stigma attached.
In the near future Craig hopes to improve his fitness and is looking forward to asking his specialist about returning to his fitness regimen. “I’d like to get back to riding my mountain bike…. even if I could get back to riding the cycle ways in Tauranga that would be great. I have all of these drivers, all of these things I want to achieve and now I can.
Let’s rid the country of this disease. The medications are there, we just need the government to be strong.
I’ve got another chance to live life without hepatitis C after 42 years with it. I just want to grab it and run with it.
“I am certainly feeling a whole lot better than I had been and the fact that I can entertain those sort of thoughts is a great credit to what Harvoni has done for me.” While Craig realises there are lifestyle changes he needs to make to stay healthy, he is choosing to embrace it and look on the brighter side. “I’ve got another chance to live life without hepatitis C after 42 years with it. I just want to grab it and run with it.” Craig says it is important to reduce the stigma around hepatitis C. “The one thing that I have found after all these years of living with hepatitis C is that the social stigma is now reducing.” Despite feeling even recently that
Craig encourages people living with hepatitis C to keep pushing forward. “If you’ve got nothing to do all day, start getting up at a reasonable time, have your shower and approach the day like you’ve got a few things to do. Otherwise it’s so easy to get buried in that funk.” He says people in New Zealand need to start putting their voices together. “We are important and we matter. Let’s rid this country of this disease. The medications are there, we just need the government to be strong.” Around 50,000 New Zealanders live with hepatitis C, a liver disease transmitted by blood-to-blood contact. Hepatitis C is the number one cause of chronic liver disease and liver cancer in New Zealand. Craig has also featured in the Summer 2014/2015 issue of talkinghepC magazine.
Hepatitis C and disclosure...
...A Q&A with someone who’s had hepatitis C
When thinking about revealing information about your diagnosis to others perhaps the main question to ask yourself is, ‘what will be the benefits if I disclose?’
Grant, 56, is a business development advisor from Hamilton. After living with hepatitis C for 20 years, he was recently cured through a clinical trial.
Friends and family members can offer valuable support at a time when you might be feeling uncertain about your future and scared about your health. They can help you cope with your feelings when you find out you have hepatitis C; they can help you deal with the physical and mental challenges, and support you if you feel discriminated against because you have hepatitis C.
Grant spoke to talkinghepC about disclosure and his hepatitis C diagnosis.
There could be negative reactions when you tell family members and friends. This kind of reaction from loved ones (and others) often happens because many people know little about hepatitis C – what it is, how it is transmitted and how it affects someone.
How would you recommend other people tell their close family members and friends?
It is important that you find out as much as you can about hepatitis C before telling others. Giving people accurate information (including booklets, pamphlets and information from credible websites) often helps correct any misunderstandings they may already have about hepatitis C and people who have it. Source: healthed.govt.nz page 14
Who did you tell about your diagnosis? I kept it fairly secret. I only told my closest friends because there is the persona that it’s a dirty disease. There is still that stigma attached to it I think.
I think you should tell those people. It’s a personal thing, and how you do it is up to you. But I think it’s very important to notify them because little things can happen to you when you are dealing with hepatitis C that are often out of character, such as tiredness and mood swings. People in families often grab each other’s razors and stuff like that. I think it’s a common courtesy to tell close family members and friends so they are aware of it. But I was still careful about who I told.
feature How would you advise others to handle the stigma? I think it depends on your personality. You’ve got hepatitis C so you’ve got to handle it. But it’s about putting a plan in place. I think the best thing to do is talk to the people who know you and whom you’ve confided, so you can put some sort of mechanisms in place to cope with it. Because even things like going to the dentist can be hard because of the stigma. How do you suggest people ask their family and friends for support? I think you can just tell them what you know about hepatitis C. What the effects are, and what to look out for. It’s about educating other people around you so they are prepared, because there are some things that are going to happen. In my time I did liver biopsies which were quite a horrendous exercise. Hepatitis C is always in the back of your mind, and you need a support system to help you through that. It’s invaluable. You need people to support you and give you advice. How do you tell your kids you have hepatitis C? I think it’s a process. I think you’ve got to be careful with children; you’ve got to pick the right age to tell them. I think I told my boys when they were about 14. So they were just old enough to not unconsciously tell other people who didn’t need to know. Children need to be aware about what they can’t touch or share with you, like toothbrushes, razors etc, and you can also put things out of their way so they don’t use them. It’s just about general cleanliness. If you bleed on surfaces, you need to make sure you wipe it up with bleach and cover your wounds. You have to be very conscious of that. For those living around people who have hepatitis C, how can they help? Just be there. For people living with hepatitis C, there can be times when you just feel so tired. People don’t understand that. They don’t understand what the fatigue is like. It’s so draining. It’s like you’re not quite asleep but just have no motivation. Those are the times when you need to be there for them, or if they want space, to leave them alone. Grant’s personal story was also featured in the autumn 2016 edition of talkinghepC magazine. Grant is happy to provide motivational support. To be put in touch with Grant email talkinghepC@hepatitisfoundation.org.nz
Who should I tell? Your hepatitis C test result is personal and you do not have to tell anyone straightaway. However, you are required to take precautions to prevent transmission of hepatitis C to others. You are advised to inform sexual partners and your close household contacts. Disclosure in healthcare settings There is no legal requirement to tell any of your treating doctors, nurses, dentists or other health care providers that you have hepatitis C. However, it is advisable to do so in order to get the best treatment for your needs. If you decide to tell any of these professionals, they are required to keep that information confidential unless you give your consent or unless disclosure is required by law (eg, court order) or in exceptional circumstances. Source: hepatitisaustralia
For more information about hepatitis C, phone 0800 33 20 10 or visit hepatitisfoundation.org.nz to access helpful resources. page 15
Symptom series: Joint pain Hepatitis C is an infection that primarily affects the liver. It also can cause problems elsewhere in the body, such as joint and muscle pain. While joint pain can occur in people with hepatitis C, it is not a common symptom of the virus. Unfortunately, obvious symptoms don’t always appear until the infection has been in the body for a long time.
Your joints endure an incredible amount of stress. They connect your bones, support your weight and above all, allow you to move. Though your joints are designed to cope with all of the stress you place on them, sometimes they suffer from wear and tear. The resulting joint pain, otherwise known as arthralgia, can be extremely uncomfortable. Arthralgia is pain in the joints. Frequent sites of joint pain are the hips, knees, fingers, and spine, although any joint can be a source of pain. Arthralgia associated with hepatitis C can be migratory, meaning it moves around. A person may have pain in their hip at one time and then pain in their knee another time. Joint pain usually comes and goes, and is rarely present all of the time. If you experience joint pain, it is important to talk with a health care provider before taking anything to treat the page 16
pain because some over-the-counter pain medicines (such as paracetamol and antiinflammatories) are potentially harmful to the liver, especially if you have scarring present in your liver. Autoimmune Response A person who has hepatitis C may also experience inflammatory joint diseases, which can result from autoimmune diseases when the immune system attacks healthy cells and tissue. Pain and stiffness are early signs of inflammation caused by the body’s autoimmune response to the hepatitis C virus. Some people with hepatitis C experience sore joints – often in the small joints of the hands, ankles or wrists. Hepatitis C can cause the body to produce small proteins – called “cryoglobulins” – which can cause joint pain. If you develop joint pain, you should see your doctor and ask about cryoglobulins. Pain associated with interferon therapy Patients often experience discomfort from the interferon medication they take to treat hepatitis C. These are side-effects of the medication, not pains from the hepatitis C itself. It is important to remember that joint pain often differs from person to person. There are, however, a number of things you can do to temporarily alleviate the pain, as well as prevent it. Sources: http://hepatitiscnewdrugresearch.com/chronic-hcv-symptoms.html, http://www.healthline.com/health/hepatitis-c-joint-pain, http://www. hepatitis.va.gov/patient/daily/pain/single-page.asp, http://life.gaiam. com/article/10-ways-relieve-and-prevent-joint-pain
Tips for reducing joint pain Massage
Massage is an excellent way to relieve joint pain. If you are self-massaging, try using a topical menthol rub to help ease pain in the affected area. Keep in mind, the direction of your strokes should always be toward the heart.
Cold temperatures reduce blood flow, and therefore reduce tissue swelling. Wrap ice in a towel or washcloth and apply to affected area for about 15 minutes.
Physical therapy Hydrotherapy
A physical therapist specialises in human movement, and can help relieve joint pain.
Warm water will ease pressure on joints and muscles, so a nice warmth bath can do wonders for alleviating joint pain in your knees and hips. Immerse the affected area in the water and massage it to stimulate blood flow.
Exercise Choose an exercise that allows you to move within the limits of your pain and does not cause further pain to the joints. That said, sometimes joint pain can be relieved by minor exercise and stretching by increasing strength and flexibility of joints.
Rest One of the best ways of alleviating joint pain is to get plenty of rest and relaxation. This will restore energy, as well as allow the body to repair itself naturally. Medications
Natural remedies Natural herbal mixtures, such as herbal teas, are an excellent means by which to help relieve joint pains. Supplements containing glucosamine can also help joint pain from osteoarthritis.
Certain medicines, such as ibuprofen, are great for joint pain relief. Ibuprofen is one of the non-steroidal anti-inflammatory drugs, it will help relieve joint swelling and stiffness and is good for occasional use. Prescribed muscle relaxants can help to reduce muscle spasms.
If you are suffering from joint pain, schedule an appointment with your doctor in order to properly assess and alleviate your discomfort. page 17
World Hepatitis Day is on July 28. In 2010 the World Health Organization made World Hepatitis Day one of only four official disease-specific world health days. Millions of people across the world now take part in World Hepatitis Day to raise awareness about viral hepatitis and to call for access to treatment, better prevention programs and government action. The Hepatitis Foundation of New Zealand Acting Chief Executive, Susan Hay, says it is important to bring hepatitis B and C to people’s attention each year with World Hepatitis Day. “More than 150,000 people are living with hepatitis B or C in New Zealand. Hepatitis remains the leading cause of cirrhosis, liver cancer and liver transplantation in the world. “With the recent funding of two new hepatitis C medications in New Zealand, many people can now access life-saving hepatitis C treatment. While we still have a long way to go to beat this disease, we are heading in the right direction to eliminate hepatitis C from New Zealand by 2030. The Hepatitis Foundation of New Zealand will continue to find those people living with viral hepatitis and provide the support they need.” What are you doing to mark the day? World Hepatitis Day is a chance for you to come together with friends and family and raise awareness. Send any photos of your World Hepatitis Day activities to talkinghepC@hepatitisfoundation. org.nz. We would love to see them!
Facts: • Worldwide 400 million people are living with hepatitis B or C. • Viral hepatitis is the seventh leading cause of death globally, accounting for 1.4 million deaths per year – more than HIV/AIDS, or TB, or malaria. • In 2010 the World Health Organization made World Hepatitis Day one of only four official diseasespecific world health days, to be celebrated each year on the 28th July. • Millions of people across the world now take part in World Hepatitis Day, to raise awareness about viral hepatitis, and to call for access to treatment, better prevention programs and government action. Source: World Hepatitis Alliance
Welcome to... Alex Lampen-Smith Alex trained in hepatology with Professor Ed Gane and the team at the New Zealand Liver Transplant Unit. She also has fellowship experience at the Queensland Liver Transplant unit in Brisbane. Alex recently started work as a Gastroenterologist and Hepatologist at Tauranga Hospital, and has also joined the Foundation as Clinical Director.
Blood tests: Here’s what you need to know beforehand
Drink plenty of water prior to the blood test as it makes it easier to collect blood from the vein.
You don’t need to fast (have an empty stomach).
Make sure you are warm, wear a long sleeved top or jumper.
Your blood test form does not expire – you can still use it even if it is a few months old.
If you lose your blood test form, don’t worry! Call The Hepatitis Foundation of New Zealand free of charge on 0800 33 20 10 and let us know. We can arrange for a new blood test form to be sent out to you.
Tell the nurse if you don’t feel comfortable having a blood test, if you have ever fainted or are likely to faint during the blood test.
Welcome to the team!
Farewell to... Tracy Clark Tracy was with the Foundation for three years and has left to complete her fourth and final year of university study. The work she carried out as a Patient Care Administrator was valued and played a significant role in the success of the hepatitis C pilot. Tracy is a hard worker and her sense of humour will be missed by the team. We wish you all the best.
Please note: We also have an electronic copy of talkinghepC at www.hepatitisfoundation.org.nz. If you prefer to receive an electronic version rather than a hard copy please email talkinghepc@ hepatitisfoundation.org.nz The Hepatitis Foundation’s Tauranga office has now closed. Please contact the Whakatane office on 0800 33 20 10.
contacts and support Hepatitis Helpline 0800 33 20 10 Give us a call, weâ&#x20AC;&#x2122;re here to help. The Hepatitis Helpline is a free, confidential service run by The Hepatitis Foundation of New Zealand, which provides general advice, information and guidance about hepatitis C, diagnosis, treatment and on-going 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 unrelated to hepatitis C.
www.hepatitisfoundation.org.nz Find us on Facebook, Twitter and YouTube.
Alcohol and Drug Helpline The Hepatitis Foundation of New Zealand 0800 33 20 10, www.hepatitisfoundation.org.nz 0800 787 797, www.adanz.org.nz Community Alcohol and Drug Services 09 845 1818, www.cads.org.nz
Christchurch Hepatitis C Resource Centre 03 366 3608, www.hepcnz.org
New Zealand Needle Exchange Programme 03 366 9403, www.needle.co.nz
Christchurch Hepatitis C Community Clinic, 03 377 8689, 10 Washington Way, Christchurch, firstname.lastname@example.org
Haemophilia Foundation of New Zealand 03 371 7477, www.haemophilia.org.nz New Zealand AIDS Foundation 09 303 3124, www.nzaf.org.nz
Hepatitis C Resource Centre Otago Southland, 0800 22 43 72 or 03 477 0407, www.hepcnz.org/otago, hepcotago@xtra. co.nz
New Zealand Narcotics Anonymous 0800 628 632, www.nzna.org
NZ Drug Foundation 04 801 6303, www.drugfoundation.org.nz