talkinghepC: Spring 2016, edition 18

talkinghep Spring 2016: Edition 18

What are genotypes?

GPs can prescribe Viekira Pak from October 1 Roger’s story: I participated in a clinical trial, now I’m cured!

Hello and welcome to the spring edition of Talking Hep C. These are exciting times for the treatment of hepatitis C in New Zealand. Health professionals in this area of medicine are genuinely thrilled to be able to prescribe better tolerated and more effective treatments for our patients with hepatitis C. However I think a good dose of patience will be required on all sides. I would ask you to be gentle with your GPs from the first of October. Hepatitis C is not something that has ever been treated in primary care before and Viekira Pak, while being an easier treatment than Interferon, still has a degree of complexity and requires a good understanding prior to prescribing. Not all GPs may have had the chance to upskill in this area. If you are wanting to see your GP for Viekira Pak treatment please let the GP / practice know so that they can be ready for the appointment. Or they may schedule you to see a different GP in the centre who is able to take on this work.

If you have advanced liver disease we are advising GPs to refer you to your local public hospital so your treatment can be conducted under the supervision of a Gastroenterologist or Infectious Diseases Physician. Patience may be required as waiting times for these appointments will be variable between different DHBs. However the award for the most patience must go to those people who are not carrying genotype 1. Please know you are not forgotten at the moment. We are all waiting for more Interferon-free treatment regimens to be approved and funded for you. Please maintain a healthy lifestyle, including drinking minimal alcohol, while you wait. For the people with non-genotype 1 infection Professor Gane takes you through a step-by-step guide on self-importation of medications from the FixHepC Buyers’ Club on page 8.

For prescribers of imported medications please be aware that providing a prescription for parallel importing of an unlicensed medication does put you in a unique situation of increased medical risk. As much as you want to help your patient please make sure you are aware of all the legal aspects. Legal advice has been sought from the Medical Protection Society on this matter. Please make contact with the Foundation if you have any questions about this.

Alex Lampen-Smith Clinical Director The Hepatitis Foundation of New Zealand

contents

Publisher: The Hepatitis Foundation of New Zealand Editor/Design/Production: Jasmin Brown-Duurentijdt Millie Freeman Editorial Contributors: Professor Ed Gane Dr Tony Farrell Dr Alex Lampen-Smith 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: talkinghepc@hfnz.nz 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 talkinghepc@hepatitisfoundation.org.nz.

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.

4 Genotypes: What are they and how are they

Genotypes: What are they and how are they different?.............................................................................. 4

different?

Feature: The roll-out of Viekira Pak............................. 6

6

Instructions for personal importation....................... 8

Feature: Taking on hepatitis C........................................ 10

Professor Ed Gane discusses Viekira Pak

12

Personal story: Kathy

I didn’t realise how sick I was until I got better.

Personal story: Kathy’s story......................................... 12

Personal story: Roger’s story......................................... 14

Who should I tell about my diagnosis? .................... 16

FibroScanning in the community .............................. 17

Comings and goings....................................................... 19

14

Personal story: Roger

Contacts and support..................................................... 20

Thanks to a clinical trial, Roger is clear of hepatitis C and living a much healthier and happier life.

page 3

Photo source: www.wfsj.org

Hepatitis C genotypes: What are they and how are they different?

Written by Dr Alex Lampen-Smith, Clinical Director at The Hepatitis Foundation of New Zealand.

Being diagnosed with hepatitis C must be a mindshift in itself. A whirlwind of emotions.

While your head is still spinning, the doctor in front of you is rattling off a whole lot of numbers, statistics and “ifs, buts and maybes” about your treatment options – all depending on your genotype. “So what is a genotype?”

To explain we need to delve into a little bit of science. Hepatitis C is an RNA virus, which means its genetic make-up is held on a single string of genetic material called RNA (human genetic instructions are held on multiple long strings of DNA). Each time an RNA virus replicates, mistakes can be made and, over time, these mistakes lead to variation in the genetic make-up of one hepatitis C virus compared to another hepatitis C virus, creating different strains of the virus. These genetically different strains have been grouped by scientists into genotypes. They are named genotype 1, genotype 2, etc up to genotype 6.

You could think of the different hepatitis C genotypes like different types of Kiwi: North Island brown Kiwi, southern brown Kiwi, little spotted Kiwi, great spotted Kiwi and the Okarito Kiwi. They’re all Kiwi but a little bit genetically different. Just like the North Island brown Kiwi and the southern brown Kiwi live in different parts of the country, the genetic variations of the hepatitis C virus have evolved in different parts of the world. Therefore, different global regions have different proportions of one genotype compared to another (see world map). In New Zealand the most common genotype is type 1 (see pie chart). page 4

Genotype impact and treatment response “OK, so a scientist can see different types of hepatitis C virus – what does that mean to me?”

I hear you ask. We need to break down that question into two areas – firstly, the impact of differing genotypes on disease progression and secondly, the response to treatment of differing genotypes.

0.5%

35%

1%

57%

7%

Research has looked at whether one genotype is likely to cause a more significant disease for the person compared to another genotype, but results are not at all settled. Generally, we would say “No”. A convincing difference has not been seen in the rate of disease progression, or the development of complications of liver disease.

However, scientists have noted one factor – the livers of people infected with genotype 3 contain more fat (hepatic steatosis). Fat present in the liver is associated with a more rapid progression in fibrosis (scarring) in the liver, and studies have shown that the amount of liver fat falls after a person with genotype 3 hepatitis C has been cured.

The second aspect to consider is the effect of genotype on the response to treatment and this is where there is a major impact. From 2005

until now, Pegylated Interferon and Ribavirin have been the main treatments available in New Zealand. People with genotypes 2 and 3 virus typically have an 80 per cent chance of cure with a 6-month course of treatment, whereas people with genotype 1 infection only have a 45 per cent chance of cure. People with genotype 1 infection have been prescribed longer courses of treatment but they still do not achieve the same rates of cure as those people with genotype 2 and 3.

Studies have shown certain factors in the genetic make-up of the person infected with the virus also impact upon the chance of treatment success. The human IL28B gene affects how our immune system works and how it responds to viruses. For people with genotype 1 infection, whether they were carrying the favourable or non-favourable IL28B gene was found to have a big impact on the chance of cure when treated with Pegylated Interferon and Ribavirin. With the favourable gene, the chance of cure rose to 70-80 per cent, compared to the non-favourable gene, where the chance of cure was 20-30 per cent.

Direct-acting antiviral medications In the modern era of direct-acting antiviral medications (DAAs), there is a different chance of treatment success across the

different genotypes. The DAAs act directly on components of the virus machinery (virus proteins) that help it replicate and grow in number. Some of the target proteins are the same across all genotypes and a drug targeting these proteins is described as ‘pangenotypic’.

Sofosbuvir (Sovaldi) is one example of a pangenotypic DAA. Some virus proteins, and the medications that target those proteins, are specific to one genotype only. This is the case for Viekira Pak, which is only effective against genotype 1 virus.

Internationally there are many DAAs considered pangenotypic, and which are now licensed.

Unfortunately they are very expensive and are not yet widely funded in New Zealand.

Therefore, the response of different genotypes to the new DAAs is having an impact in New Zealand right now. Viekira Pak has been available from specialists since July, and from GP and community prescribers from 1 October.

However it is only effective against (and therefore only funded for) genotype 1 virus.

Do you know what genotype you have? If not, ask your healthcare provider to check your laboratory records. If a hepatitis C genotype is not on record, you can request a blood test and will receive an answer in about 10 days. page 5

feature

feature

The roll-out of Viekira Pak across New Zealand Written by Professor Ed Gane, New Zealand Liver Transplant Unit, Auckland Hospital.

Since July 1, all New Zealanders infected with hepatitis C (HCV) genotype 1 have been able to access a 12-week course of Viekira Pak through a specialist. This treatment, manufactured by AbbVie, is highly effective and cures almost 95 per cent of genotype 1 patients. Viekira Pak is much better tolerated than the old interferonbased treatments and much simpler.

Viekira Pak can also be prescribed as a combination with Ribavirin. People with HCV genotype 1a infection have to take Ribavirin along with Viekira Pak. Ribavirin is associated with symptoms of fatigue, anorexia (common), and cough and rash (uncommon). These people take up to 10 tablets per day.

Viekira Pak and safety While there is no need to test for the virus during treatment (everybody responds), some patients do need blood tests to check for safety.

All patients who are taking Ribavirin need a Full Blood Count at two, four and eight weeks into treatment to check for anaemia – which is treated by reducing the Ribavirin dose. Patients with cirrhosis need Liver Function Tests at two, four and eight weeks through treatment to check for liver toxicity – which is very rare but is treated by stopping Viekira Pak. It is important to check for drug interactions with any current or new prescribed or over-thecounter medicine. Your doctor or pharmacist can use online applications to check whether your other medications are safe. If not, they can either be stopped for the 12 weeks of treatment or switched to a safe alternative. page 6

GPs can prescribe treatment from 1 October Between July 1 and September 30, all patients had to be treated with Viekira Pak by hospital specialists. However, from October 1, only patients who have cirrhosis need to go to see a hospital specialist. Everyone else will be able to be treated by their GP. Patients can also be treated at CADS, Needle Exchanges, or within prisons. This is part of a pilot programme which will use Treatment as Prevention – i.e. to stop transmission amongst people who inject drugs.

3. Almost half the New Zealanders living with HCV are infected with an HCV genotype other than genotype 1 and therefore will not be cured with Viekira Pak. The only funded treatment available for these patients infected with HCV genotype 2, 3, 4, 5 or 6 is still Pegylated Interferon and Ribavirin. This comes with the usual bad side-effects of depression, flu-like symptoms, weight loss and rashes.

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This community prescribing is the most important step towards eliminating HCV from New Zealand. However, some challenges remain: 1. Some GPs are reluctant to prescribe Viekira Pak because of lack of familiarity with this new treatment. To help them, the Ministry of Health is providing many types of education and training. Local hospital nurse specialists will also help support the practice nurses.

2. Many people will be unable to pay the part charge for GP visits required for this treatment. Visits include a minimum of one 15-minute initial consultation to arrange testing, a second 30-minute consultation to discuss treatment options and review potential drug interactions, three phone consultations during treatment to discuss safety monitoring results, and a final 15-minute consultation at 12 weeks posttreatment to discuss the outcome of treatment.

•

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There will be a real temptation to treat patients who have genotype 2-6 with Viekira Pak. But this should NEVER happen.

Patients with HCV genotype 2-6 who are intentionally or accidentally treated with Viekira Pak could rapidly develop resistance to all other oral treatments being developed for genotype 2-6. This could mean that they cannot be cured in the future. All people infected with HCV genotype 2-6, without cirrhosis, should be reviewed annually to receive an update on treatment options.

Patients with genotype 2-6 can either wait for Pharmac-funded therapy (expected in 2017) or they can import generic DAAs from overseas via internet-based organisations such as the Fix HepC Buyers’ Club.

The most appropriate generic regimen for these patients with genotype 2-6 infection is daclatasvir-sofosbuvir, which is selffunded at a cost of $2100.

People with decompensated cirrhosis are eligible for funded Harvoni treatment, regardless of their genotype. Harvoni is prescribed by a specialist.

Personal importation It is important however, that the buyer exhibits caution when importing generic drugs to ensure: • • •

he/she avoids purchasing fake, diluted, or contaminated drugs from sham sites he/she orders the best regimen for his/her HCV infection he/she has the necessary documents to prevent confiscation by Customs at the border.

For more instructions on personal importation see page 8.

Many people with HCV genotype 2-6 infection cannot afford the NZD $2100 needed for the 12week supply of generic daclatasvir-sofosbuvir.

Therefore, Pharmac needs to consider current and future pangenotypic regimens (drugs that can treat all genotypes) for this unmet medical need.

Currently, available options include Sovaldi (sofosbuvir) plus Ribavirin, Sovaldi (sofosbuvir) plus Pegylated Interferon/Ribavirin,Harvoni (ledipasvir-sofosbuvir) plus Ribavirin and Daklinza/Sovaldi (daclatasvir-sofosbuvir). It is likely the next medication to be approved is the new Gilead 12-week single-tablet regimen of EPCLUSA, which is in Phase III studies. It has achieved cure rates of 95 to 99 per cent across all genotypes.

Currently in Phase II studies is AbbVie’s eightweek NEXT GEN, which has achieved SVR12 (sustained viral response after 12 weeks treatment) rates between 97 and 99 per cent across all genotypes. Neither EPCLUSA nor NEXT GEN would require any baseline genotyping or safety monitoring, which would enhance treatment uptake in general practice.

Elimination of HCV will only be possible when such a pangenotypic treatment is funded by PHARMAC. page 7

Don’t qualify for the newly funded treatment?

Here are instructions for personal importation

The generic medications have an overall cure rate of more than 95 per cent and excellent safety, proving that these generic drugs are the real deal, costing less than five per cent of the price of brand drugs. Dr Freeman’s report can be found here: www.natap.org/2016/EASL/ EASL_95.htm

and FibroScan score.

3. Patient logs into fixhepc.com and sets up an account.

4. Patient logs into the Decision Support Tool (see http://fixhepc.com/hcv) to determine the correct regimen. The best option for New Zealanders infected with HCV genotype 2, 3, 4, 5 or 6 is a 12-week course of daclatasvir-sofosbuvir. If the patient has cirrhosis or prior nonresponse to PegInterferon/Ribavirin, then either Ribavirin should be added or duration extended to 24 weeks. If 24 weeks’ supply is required, then the patient will need two separate prescriptions for a 12-weeks supply and also approval from Medsafe.

2. GP/specialist checks patient’s HCV genotype page 8

NZD $2100.

6. GP prints out and completes the Medsafe Medications Approval Letter (download from http://fixhepc.com/images/forms/ Medsafe-Rx-Meds-Letter.pdf ).

7. Patient/GP goes to the Redemption eTrials site (https://fixhepc.com/r/) and completes the registration form. Also uploads scanned copies of (i) Prescription, (ii) Medsafe Medication Approval Letter; (iii) copy of passport or driver’s licence.

5. GP completes prescription for the correct regimen (daclatasvir 90mg for 84 days plus sofosbuvir 400mg for 84 days). The cost of this 12-week course will be approximately

Avoid fatty foods Fatty foods clog your liver and stop it working.

Avoid cannabis Heavy cannabis use can scar your liver.

your Indian script.

13. The patient will receive an email from MonkMed containing the tracking number.

Within two weeks, the patient will receive the couriered medications (complete 12-week supply).

The patient should contact their GP prior to starting the course.

8. Patient completes the online payment by credit card.

9. Patient registers online at MonkMed http:// monkmed.com/redemption2 or http:// monkmed.com/redemption3.

10. Once this online registration process is completed, the patient will receive a copy of all uploaded forms.

The following is step-by-step instructions on how to access generic hepatitis C medication 1. Once someone has decided to go ahead with importing generic Direct-Acting Antivirals (DAAs) they should arrange to meet with their GP and follow the instructions available on The Fix Hep C website: http://fixhepc.com/new-zealandredemption-etrials-process.html

Cut back on alcohol Heavy drinking is hard on your liver. Drinking less alcohol is the most important change you can make.

Written by Professor Ed Gane, New Zealand Liver Transplant Unit, Auckland Hospital.

To date more than 500 New Zealanders and Australians have accessed generics through the Australian Fix Hep C Buyers’ Club. At the European Association of the Study of the Liver Congress in Barcelona, April 2016, Fix Hep C founder Dr James Freeman presented some promising results. The results were from 146 people, mainly Australians and New Zealanders, who have been treated with 12 weeks of generic ledipasvir-sofosbuvir (genotype 1 and 4) or daclatasvir-sofosbuvir (genotype 3).

While you wait to receive treatment, you can help keep your liver happy by making some lifestyle changes:

11. Within one week, the patient will be contacted to schedule an online appointment with a MonkMed Doctor to obtain an Indian script required by Indian Customs.

12. Medication will be shipped to the patient’s nominated address once all documents have been received and you have obtained

The daclatasvir-sofosbuvir is coformulated into a single once-daily tablet. If no Ribavirin is required, then no on-treatment monitoring is necessary, although The FixHepC Buyers’ Club will invite the patient to supply some follow-up results.

The patient should have a blood test performed for HCV RNA 12 weeks after the end of treatment to ensure that he/she is cured.

page 9

feature Taking on hepatitis C: A few words from Dr Tony Farrell Written by Dr Tony Farrell, GP at Mount Medical Centre.

A patient recently booked in to see me specifically to ask if he could get on The Hepatitis Foundation’s Hepatitis C “Programme”. He was profusely thankful when I told him that he could start treatment on 1/10/2016. Because he was genotype 1 and didn’t have a very scarred liver he qualified for the newly funded Viekira Pak treatment. I was taken back by his gratitude and relief, when he probably could have said “about bloody time!”

This made me realise that the stigma of this illness is alive and well despite the enormous advances in our ability to eradicate the virus in a new “treatment as prevention” paradigm.

I have not seen many new cases yet for treatment after the availability of the new DAAs became public. From October 1 GPs can prescribe the fully funded Viekira Pak medication.

I am involved in a Midlands project to provide a service accessible by e-referral, and the Ministry of Health has been calling for tenders nationwide for similar service provision. People with hepatitis C need advice on how to avoid reinfection as well page 10

as other important aspects of overcoming this virus. This can be done in a timely and sensitive way with a specialist nurse at the FibroScan service, rather than at a first consultation with a doctor when asking for a test.

What questions do people with hepatitis C ask you?

With the means to help improve the quality of life of hepatitis C patients I am very excited about the newly funded DAAs. But I haven’t prescribed many direct-acting antivirals yet. I have a patient who has their own supply of Harvoni to treat his genotype 3 hepatitis virus, but he is using so much synthetic cannabinoids. I was unsure of what interactions could take place, or if intoxication could cause him to forget his pills, causing resistance and failure of treatment that costs thousands of dollars.

Generally people don’t tend to ask many questions about their virus, unless I am trying to persuade them to start treatment. I wonder if this is related to the stigma (or me talking too much!).

Patients used to ask about liver biopsies and many had stories about friends on interferon, but now I find I am doing a lot of information sharing as all of this is in the past and information changes quickly.

I have certainly had people asking about access to Harvoni and other anti-viral treatments, and there were quite a few people enquiring about clinical trials over the past few years. People worry about the state of their liver, of course, and I try to use this to motivate reduction in cannabis, fatty foods and alcohol use, which accelerate scarring and ultimately the risk of cancer.

When did you first start seeing hepatitis C patients?

I diagnosed my first hepatitis C patient in 1993 as a locum GP. This was a lady who was infected via a blood transfusion. She was angry as she had no other risk factors, and sadly died of hepatoma. Throughout 17 years of involvement

For those concerned about these interactions there is an excellent website by the University of Liverpool which can advise which medicines need to be stopped or reduced while taking hepatitis C medications: http://www.hepdruginteractions.org

How has the funding of the new DAAs influenced your job as a GP so far?

Prior to the funding announcement in July I had referred several patients to a local specialist to procure and administer Harvoni through The Fix Hep C Buyers’ Club in Australia and they are now starting this very tolerable treatment to clear the virus after 90 days.

How are you preparing people for treatment?

Photo: Andrea Keast

If a person has a hepatitis C PCR positive result (Polymerase Chain Reaction), it is important to know the genotype of the virus and the level of liver scarring. For very scarred livers, specialist treatment is necessary with support from the GP. Otherwise the patient and GP can get on with it under a relatively simple treatment protocol. This means that access to FibroScans is critical for the success of General Practice treatment of hepatitis C.

with treatment of opioid-dependent patients, I have seen patients undergo liver biopsies to then endure the immune and mood depleting interferon (often not succeeding in eradication).

I have treated patients for skin rashes, thyroid disease, fatigue, nausea and anorexia all relating to a virus that we now have the ability to cure. In short, it has been pretty hard going for people with this disease.

I have been trying to prepare my patients who have genotype 1 – advising them to come back after October 1 if their FibroScan results show no mild or moderate fibrosis. Any people with cirrhosis or major medical issues alongside hepatitis C are being referred to specialist services, as since July 1 many of them can receive specialist-prescribed DAAs. The funders delayed the availability of DAAs to GP prescribers so that primary care would have time to organise services such as access to FibroScans, and training GPs to prescribe Viekira Pak. The combination of medications in this curative regime can interact with many medications such as Valium, Seroquel, and other common medications like Zopiclone.

It’s really reassuring to know that there is support out there for patients and General Practitioners.

The specialists I have met and dealt with in my work – hepatologists, infectious diseases specialists and gastroenterologists – have just been excellent. They too are very engaged in developing streamlined services to diagnose and treat those affected.

How do you feel about the fact that only some people will be treated straight away?

I am frustrated about the delay in funding to those with genotypes 2, 3, 4, 5 and 6. Only patients with genotype 1 and liver decompensation will have access to treatment for now. So it’s 60 per cent exciting and 40 per cent frustrating but come October 1, we hope that patients and their General Practitioners and specialists are successful in our quest to commence eradicating a virus that has infected over 50,000 kiwis. Please contact your General Practitioner for treatment or a referral to someone who will prescribe Viekira Pak and please urge anyone with risk factors for hepatitis C to have a test – because acceptable treatment is here.

page 11

personal story

Kathy’s story Kathy, 55, had been sick for a very long time.

Since contracting hepatitis C 30 years ago, she had to stop working and found doing everyday chores difficult because of the symptoms.

Thankfully, that changed with the help of DAA (direct-acting antiviral) treatment Harvoni.

Kathy completed a 12-week course of generic sofosbuvir in May, giving her another chance at living a healthy life. The hepatitis C virus is now undetected in her blood.

“It was a bit of a shock because at the time I also found out that a lot of people I’d known 10 years earlier also had hepatitis C. I didn’t know much about it and I don’t think many people did.”

I really didn’t know how sick I was until I got better.

Hepatitis C made Kathy very sick in the last 10 to 15 years. “I’ve experienced fatigue, brain fog, itchiness, and aching bones. I live an hour and a half from the nearest service town and I go there once every three months for supplies. I would have to emotionally prepare myself beforehand. Everything was difficult emotionally and physically. I had to put a bit of energy away if I had something I needed to do. I really didn’t know how sick I was until I got better.”

Kathy lives in Karamea, on the West Coast of the South Island. “I live on the land, look after chickens and the garden, things like that.”

While she’s unsure how she contracted hepatitis C, she says it was likely through intravenous drug use or from getting tattoos with unsterile equipment.

“I was diagnosed pretty quickly after contracting it in the 1980s. I thought I had got rid of it, but then in the 1990s I discovered I still had it. page 12

Kathy had never seen a liver specialist until last year. She was offered interferon treatment but declined because of the severe side-effects associated with taking the medication. “I’m lucky because I don’t have cirrhosis. I have minimal liver damage. I haven’t consumed alcohol for 30 years and I am very strict about what I eat.”

While she has a good support system, Kathy says she didn’t discuss her hepatitis C diagnosis with many people. “I have a good relationship with my family, though we all live in different

places. My youngest sister in particular has been a major support person for me. But so many people out there are unwell because of different reasons. I didn’t really talk about hepatitis C to people I didn’t know well, especially here in my small town.”

Kathy says there is a stigma associated with having hepatitis C. “People assume that you are a drug addict. While I was, it’s not particularly something I talk about with other people.”

Now, she is clear of the virus.

Kathy decided to seek generic treatment through the FixHepC Buyers’ Club. “It was absolutely an easy choice to take the Harvoni treatment. As soon as I did some online research about the drug I knew it would be worth it, to get cured. I infected myself through making impulsive decisions, so I thought it was worth the risk.”

She received a 12-week course of Harvoni and says she felt better within a few days of treatment. “The mind fog cleared very quickly.”

the virus. I thought that I was going to live out in the country, slowly get wearier and wind down. But now I think I’ve got more living in me. It’s amazing. It’s like a miracle.”

Kathy had hepatitis C genotype 1a, so she would also have qualified for Viekira Pak which became funded for people with genotype 1 of the virus from July 1, 2016. “I’m so pleased it’s funded for some people. I have a few friends who are getting cured now because of the new funded treatments.

I feel so much better in every imaginable way.

She encourages other people to access the funded treatment if they can. “You might not realise how sick you were until you don’t have hepatitis C anymore.”

In her spare time Kathy plays music, enjoys gardening and making clothes. “Now that I have more energy I can spend more time doing the things I love.”

Now, she is clear of the virus. “I feel so much better in every imaginable way. There are so many things that were wrong with me that I attributed to being a post-menopausal 50 year-old woman, but were actually a result of page 13

personal story

Roger’s story Article republished with permission from Bloodline, Journal of Haemophilia Foundation of New Zealand Inc. Hepatitis C (HCV) is a silent killer that can lurk in the system for years before showing any symptoms. For years the best way of treating HCV has been with interferon, which works in about 50 per cent of cases. However, the side-effects of interferon can be as bad, or worse, as the HCV itself, and there’s certainly no guarantee of clearing successfully. Many people have chosen to forgo treatment, just because it’s so tough on them.

Roger is an old-school kiwi bloke. He was almost 40 when he was diagnosed with HCV, even though he’d been having symptoms for a while.

The recent rise of treatments such as Harvoni has changed all that. These treatments are easy to take, are short duration, have very few sideeffects, and are proven to be effective in more than 90 per cent of cases. People who have taken the Harvoni treatment have said how easy it was, and how quickly they started to feel better. One of the key components of many of these treatments is the direct-acting antiviral agent (DAA) sofosbuvir.

The first sofosbuvir trials took place in NZ in 2013. Thanks to the people involved in the trials sofosbuvir was proven to be effective and safe, and the commercial treatment Harvoni was approved for use. One of those people involved in the early trials was Roger Manson.

Roger, 69, is an old-school kiwi bloke. He was page 14

almost 40 when he was diagnosed with HCV, even though he’d been having symptoms for a while. It was likely Roger had the disease for 13 to 14 years. He was supplied with tainted blood products in the 1980s to treat his haemophilia.

It is likely he contracted HCV this way.

Roger lives in Rotorua with his wife Pim and sells lawnmowers from his property. In his spare time he enjoys going fishing on his boat.

When Roger was diagnosed with HCV he didn’t want to cause a fuss, he just wanted to get on with his life. By the time the sofosbuvir trials came along he thought he might as well leave the fancy new treatment to the young people, folks who would benefit more than an old guy like him. He was asked more than once to get on board with the trial, but wasn’t interested.

“Not for me”, he said. However, his symptoms were getting worse, his health wasn’t great, he was constantly feeling low and sad, and he’d developed mild fibrosis of the liver too. Still, he was happy enough soldiering on without treatment. From what he’d heard about the interferon days the treatment was worse than the cure anyway.

Roger’s doctor told him that without the treatment he may not have lived another six months.

That’s when Roger’s Outreach Worker at Haemophilia Foundation stepped in. Roger credits Joy for convincing him to finally agree to take part in the trials of the new DAA, sofosbuvir. She recognised his low mood and

declining health and wanted to give Roger the quality of life he deserved. Now, reading and writing aren’t Roger’s strong suits. So Joy had a lot to do in deciphering all the information and getting all the documentation together with Roger. Between them they managed to get it done and Roger was accepted into the trial.

In March 2014 Roger was informed that he, along with the other 48 trial members, were totally clear of the hepatitis C virus. Roger is amazed at just how much his life has been changed by taking part in the trial and curing his hepatitis C. He says that, while he was always reluctant to try treatment, knowing what he knows now he wishes he’d tried it sooner. He is astonished by how much energy he now has, and how much better he feels in himself. “It’s a marvellous thing that these people have found,” he says. “The energy I’ve got now is unbelievable”. Roger says his energy levels are three times what they were before the treatment, and his depression has all but disappeared.

Roger says his wife Pim was a huge support during his treatment. She would travel with

him to all his appointments. “She’s just brilliant.”

Roger’s doctor told him that without the treatment he may not have lived another six months. While Roger is thankful for the support he received, the real credit has to go to Roger himself. At the age of 66, after a lifetime of just putting up with his symptoms, he made the choice to jump in with both feet and give himself a chance at a better life. Not only that, he volunteered for a trial that led to thousands of other Kiwis’ lives being made better too.

Roger’s reward is a better quality of life, the opportunity to experience the world without chronic fatigue and depression.

Roger’s reward is a better quality of life, the opportunity to experience the world without chronic fatigue and depression. He thinks that is a great deal, and is quick to encourage everyone to step up and take the chance at a life free of HCV.

page 15

Who should I tell about my hepatitis C diagnosis?

You do not have to tell anyone you have hepatitis C but you may choose to share this information with particular people for support.

It is often best to tell people you trust or people directly affected, such as household members or sexual partners.

Telling healthcare workers such as a doctor or nurse, may be beneficial for good health care (e.g. prescribing the most appropriate medications). Healthcare workers, including dentists, are required to use standard infection control precautions for all situations and

procedures that may involve exposure to blood or other bodily fluids, regardless of whether you have hepatitis or not.

Do I need to tell my employer?

People living with hepatitis C do not have to tell employers, unless you work in an environment that may put others at risk, such as healthcare.

However, disclosure is not mandatory.

Discrimination against people with hepatitis C in the workplace is illegal.

Going for a blood test? 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.

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•

•

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.

The FibroScan – What to expect

If you’re due to have your first FibroScan, you may be feeling unsure about the procedure and concerned about the results. Kerry Kennedy is a Hepatitis Foundation community nurse based in Auckland. In late June she held a FibroScan clinic over two days at Rotorua Area Primary Health Services (RAPHS). Alison Brown, staff member at RAPHS, talked to Kerry about the procedure.

A FibroScan helps doctors assess the degree of liver damage caused by the hepatitis C virus.

In the past, the routine test for cirrhosis was a liver biopsy, which is painful, and carries risks of bleeding. This has now largely been replaced by the non-invasive FibroScan machine, which measures the degree of scarring, or liver damage, through the delivery of ultrasound waves.

For most patients, all they feel is a succession of bumps in a targeted area. Used in conjunction with blood tests, the scan result provides an accurate picture of the health of a person’s liver.

Kerry says the scanning process can be different for each person. “With some people I find the spot I need to target straight away. I need 10 readings in the same spot, but it can take a while to find the right area. I’ll let people know at the start of the appointment that there may be a one in 10 chance I can’t get an accurate reading. Being an ultrasound wave, there can’t be any obstruction from tiny rib spaces and occasionally it can be difficult to scan obese patients successfully.”

If a patient’s scan result indicates severe fibrosis or cirrhosis, Kerry will inform them straight away and give them a form for blood tests.

The FibroScan can overestimate the level of scarring so a blood test is essential.

The 30-minute appointment is also an opportunity for Kerry to explain to the patient more about their condition, highlight the importance of ongoing blood tests and discuss future treatment options.

“A large part of the appointment is spent educating the patient. A lot of written information is available but they might not read confidently. Most patients really appreciate having someone explain their condition in a way that’s easy to understand. We’ll answer any questions they have and they leave feeling a lot more informed.

“The clinics were a real success and the reception staff played a part in that. The staff were so welcoming and friendly and they demonstrated a lot of respect for the patients, many of whom with hepatitis C in particular, feel very vulnerable.”

Kerry is one of nine community nurses that The Hepatitis Foundation has based around the country.

Story originally published in RAPH’s July 12 Newsletter Written by: Alison Brown

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comings and goings Welcome to.....

Kelly Hayes - Nurse Manager The Foundation is pleased to welcome Kelly in the new role as Nurse Manager. Kelly will have management and clinical leadership responsibilities and will be based in Whakatane.

She has a nursing background in emergency departments, management roles and primary care. Her experience across a broad range of nursing roles will provide valued support to our team.

Susan Hay - CEO We are delighted to announce Susan will continue on with The Foundation as the newly appointed CEO. Susan has worked with The Foundation for four and a half years as the Hepatitis B Programme Manager and Operations Manager.

Susan has a proven ability to manage a diverse team across New Zealand.

Farewell to.....

Kelly Barclay - Acting CEO

Janette Medforth - Customer Relationship Manager

It is a sad farewell to Dr Kelly Barclay who has worked at The Foundation for five years in senior management positions. Kelly managed the successful implementation of the hepatitis C pilots in Wellington and Bay of Plenty. He was the Business and Strategy Manager before he took up the Acting CEO role for a year.

Janette worked with The Foundation for 11 and a half years. Janette has had a great positive influence at The Foundation through her work as a Customer Relationship Manager. Janette’s bright personality will be missed by the team.

Kelly is now working as an independent consultant and the team at The Foundation wish him well with his new endeavours.

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Janette has taken up a Senior Nurse position at Auckland Clinical Studies.

We wish you all the best!

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contacts and support

Hepatitis Helpline 0800 33 20 10

Give us a call, we’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, hepc@rwc.org.nz

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