talkinghepC: Summer 2016, edition 19

talkinghep Summer 2016/2017: Edition 19

Professor Ed Gane: What’s next for hepatitis C?

Elliot’s story: Thanks to a clinical trial and transplant I’m hepatitis C free!

A day in the life: Community FibroScan nurse

contents talkinghep

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Publisher: The Hepatitis Foundation of New Zealand Editor/Design/Production: Jasmin Brown-Duurentijdt Millie Freeman Editorial Contributors: Professor Ed Gane Dr Bryan Betty

News

Feature: Professor Ed Gane writes about the AASLD Liver Meeting

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

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Feature: Dr Bryan Betty from PHARMAC discusses new treatments Personal story: Elliot Freer

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.

Personal story: Fungisai Siggins

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.

A day in the life: Community FibroScan nurse

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.

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Symptom series: Brain fog

Contacts and support

The Talking Hep C magazine has been a huge

success over the last 4 years with over 28,000 copies printed each year. The Foundation’s communications team have worked tirelessly to gather information about hepatitis C and fit it into each edition. The patient stories are a particularly successful part of the magazine.

These stories help personalise hepatitis C and show that everyone’s experience with hepatitis C is different.

On behalf of the Foundation and the readers of Talking Hep C, I would like to say a very big thank you to those patients who have shared their journey with others. For half of patients living with hepatitis C there is now a cure, but for the other half the journey continues until more treatments become available free of charge in New Zealand. The Foundation will continue to support people with hepatitis C through our helpline and information on our website.

This is our last Talking Hep C magazine for the year, and also the last time the magazine will be in this format. Commencing 2017, Talking Hep C magazine will be incorporated with the hepatitis B newsletter. The newsletter will still be made available on our website. The Foundation would like to say a big thank you to our regular clinical contributors – Dr Frank Weilert for his very helpful articles and also Professor Ed Gane who has helped people

understand the strangely named hepatitis C treatments. Thank you to our Clinical Director, Dr Alex Lampen-Smith, who takes the complicated clinical language and translates it into copy that is easy to understand.

Lastly a huge thank you to you, our readers, for sharing the Talking Hep C information in order to improve the lives of people living with hepatitis C. Have a safe and enjoyable Christmas and New Year. We will be back next year with an online newsletter. Please visit our website in the new year if you wish to subscribe.

Susan Hay Chief Executive The Hepatitis Foundation of New Zealand

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news The Hepatitis Foundation of New Zealand donates two FibroScan machines The Hepatitis Foundation of New Zealand is gifting two FibroScan machines to help health organisations around New Zealand speed up monitoring and treatment of new hepatitis C drugs.

The Hepatitis Foundation will gift one FibroScan machine to the Auckland District Health Board (ADHB) for use in Needle Exchange and the community and the other to Canterbury DHB which will also be used by the Christchurch Needle Exchange and surrounding DHBs.

A FibroScan machine determines if liver damage is present by measuring the stiffness of the liver. The procedure is similar to an ultrasound, as a probe is smoothed over the liver area.

Hepatitis Foundation CEO, Susan Hay, says many DHBs around the country are in need of FibroScan technology so people with hepatitis C can access new treatments.

“The funding of new-generation treatments earlier this year means many people with hepatitis C can access treatment and will therefore be needing a FibroScan assessment beforehand. It is vital to know the condition of the liver before putting people on treatment.

FibroScan machines are a very quick, painless page 4

and effective tool for assessing the health of a patient’s liver,” says Ms Hay. “The South Island is particularly in need of this technology. People living in rural areas around the South Island don’t have access to this service. We want to help meet this need.”

In addition to gifting the FibroScans, the Foundation will also cover the first year of servicing costs for each machine.

Alan Pithie, Consultant Physician at Canterbury DHB, is delighted to accept a FibroScan from the Foundation.

“It’s great news. The FibroScan machine will be shared across Canterbury, West Coast, Nelson-Marlborough and South Canterbury as a mobile resource to allow access to as many people as possible across the northern part of the South Island. This will facilitate assessment and commencement of appropriate therapy (for people with hepatitis C).”

Ms Hay says the Foundation aims to expedite access to treatment for people with hepatitis C in New Zealand. “Providing health services with FibroScan machines will speed up the treatment process for many patients.”

Hepatitis is a virus that causes inflammation of the liver. About 150,000 New Zealanders live with chronic hepatitis B or C. The Hepatitis Foundation of New Zealand is a not-for-profit organisation that aims to improve health outcomes for those New Zealanders living with viral hepatitis. The Foundation offers a national Hepatitis B Programme as well as education and FibroScan services for hepatitis C in the Midlands and Central regions.

news Hepatitis Foundation nurses raise awareness at community events

Julie Thurbon and Siawling Chia attended the AIGA Day in Whangarei to raise awareness of viral hepatitis. The charity event was hosted

by Northland Pacific Island Charitable Trust on Saturday 8 October.

AIGA means family in Samoan. This year’s theme was “Navigating our Futures”, and provided education around all areas – health, education, work, families.

Julie Thurbon, Community Nurse at the Foundation, said it was a great event. “There was lots of food, entertainment and interesting stands to visit. Thank you to those who attended, see you next year!”

Hepatitis Foundation nurses Alannah Gibson and Helen Purcell attended the New Zealand Gastroenterology Annual Scientific Meeting from November 23-25. The conference was held in Hamilton.

Hepatitis Foundation Nurse Manager Kelly Hayes says the conference was a great opportunity to raise awareness about viral hepatitis and the Foundation’s services.

“Next year’s open day in May will be another opportunity to get the Foundation’s name out there and recognised by health professionals in particular.”

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news Hepatitis Foundation Nurses Conference upskills nurses around the country

In October The Hepatitis Foundation brought together more than 60 nurses from around the country to broaden their knowledge of advanced liver disease (ALD).

Rachel Wundke, a hepatology specialist nurse from South Australia, travelled to Auckland specially to present the full-day ALD course at the conference. Mrs Wundke worked alongside the Australian Hepatology Association (AHA) and other health professionals to develop the ALD course last year. Since its completion in March it has been taught at conferences around Australia and knowledge gained at the Auckland conference will now be passed to colleagues around the country.

Mrs Wundke says the ALD course is aimed particularly at people who do not have much knowledge of viral hepatitis. “However, we are quickly finding that even people who have been in liver care and hepatitis care for a long time may not have cared for people with cirrhosis of the liver. This makes the course a really good upskill for those people,” says Mrs Wundke.

Australia is well on its way to eradicating hepatitis C using DAAs (direct-acting antivirals), but she says New Zealand has some catching up to do.

“We are thrilled that here in Australia we can treat everyone with hepatitis C with the newly funded medications,” says Mrs Wundke. “We

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want to eradicate hepatitis C in Australia by 2030 and that momentum is underway now.

“I think it is more difficult to do this in New Zealand because of the restrictions on medications.” At the moment access to DAAs is restricted to people with decompensated cirrhosis or genotype 1 of the virus.

“It’s still important to remember that many people with hepatitis C in New Zealand can still access funded Harvoni or Viekira Pak. Some access to medication is better than nothing and it will mean a lot for those who are eligible.

“In Australia we have seen some amazing turnaround with the new treatments. People with decompensated cirrhosis have come off the transplant waiting list. It’s incredible.”

The Hepatitis Foundation Chief Executive Susan Hay says the Foundation was delighted to have had Mrs Wundke, Dr Alex LampenSmith and Dr Chris Moyes present at this year’s conference. “It was wonderful to have these leading specialists on board to share their knowledge and experience.

“We had a lot of interest in the conference this year. It’s great to know that so many health professionals were keen to learn more about viral hepatitis.”

photos

Hepatitis Foundation CEO, Susan Hay, welcomed Rachel Wundke, a hepatology specialist nurse from Australia to present an Advanced Liver Disease Course developed by the AHA (Australasian Hepatology Association).

Rachel Wundke, a hepatology specialist nurse from South Australia, taught a full-day Advanced Liver Disease course.

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feature

The 2016 AASLD Liver Meeting: HCV treatments Written by Professor Ed Gane, New Zealand Liver Transplant Unit, Auckland Hospital.

The AASLD (American Association for the Study of Liver Diseases) Liver Meeting held in November will be remembered as the meeting where “Perfectovirs” were finally presented.

It will also be remembered as the last major liver disease meeting focused on hepatitis C (HCV). The Liver Meeting was held in Boston, America from November 11-15, 2016. More than 9,500 hepatologists and hepatology health professionals travelled from around the world to attend the meeting.

There were in fact three different Perfectovirs presented at the meeting. Perfectovirs are essentially a treatment regimen that will cure everyone with hepatitis C. Photo Source: AASLD twitter

AbbVie: Glecaprevir/Pibrentasvir At the meeting, the Phase III ENDURANCE study results were announced from AbbVie’s new pangenotypic regimen. Pan-genotypic medications treat all genotypes of the hepatitis C virus. The fixed-dose combination Glecaprevir/Pibrentasvir (G/P), is conveniently dosed once daily and has minimal drug interactions compared to previous regimens.

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Previously, 12 weeks of treatment has been shown to be safe and effective in treating people infected with all HCV genotypes, including those with cirrhosis, and despite prior Pegylated Interferon failures. At this year’s meeting, AbbVie showed that shortening the treatment duration (for patients without cirrhosis) to only 8 weeks did not reduce its effectiveness. In the Phase III ENDURANCE study of G/P, 98 per cent (693 of 711) of patients with HCV genotypes 1-6 were cured.

If G/P is approved by AbbVie it is likely that 8 weeks of treatment will be approved for all patients without cirrhosis, while 12 weeks of treatment will be reserved for the more-difficultto-treat patients including those with cirrhosis, or who have already failed another DAA regimen (like Viekira Pak or Harvoni). Another difficult-totreat population is patients with kidney failure, who have a very high rate of HCV infection.

Neither Glecaprevir nor Pibrentasvir is excreted through the kidneys and therefore is an ideal regimen to use in patients on dialysis.

The EXPEDITION phase of the study revealed 99 per cent (103/104) of dialysis patients with chronic HCV infection were cured within 12 weeks of G/P treatment. The only patient not cured, stopped treatment after 3 weeks because of an unrelated bowel problem. It is reassuring to note in this study and previous studies, the regimen was very well tolerated and had no specific side-effects for the very sick population of dialysis patients.

G/P should be approved by the FDA in mid-2017 and should become approved in New Zealand in late 2017.

Gilead: Sofosbuvir/Velpatasvir/Voxilaprevir The final results were also presented for a new single-tablet regimen manufactured by Gilead.

feature

cure 99+ per cent, what is left to do?

The regimen is a combination of Sofosbuvir, Velpatasvir and Voxilaprevir (SOF/VEL/VOX). The Phase III POLARIS study revealed: •

12 weeks of this tablet cured 99 per cent of people who had already failed a DAA treatment (mainly Harvoni and Viekira Pak).

•

8 weeks of treatment cured 95 per cent of people who had never been treated before.

Those who were not cured did not develop resistance so could be easily retreated with the same regimen but for longer.

Photo Source: AASLD twitter

Gilead: Epclusa Gilead also provided further results from 12 weeks of its single-tablet regimen of sofosbuvirvelpatasvir (Epclusa) which is now approved in the US and Europe. Epclusa’s results were even better than those presented last year. The study revealed 99 per cent of all patients treated with Epclusa were cured, irrespective of genotype, cirrhosis and prior interferon treatment.

Summary So we now have three different regimens (G/P for 8 weeks, SOF/VEL/VOX for 8 weeks and SOF/ VEL for 12 weeks), which will cure 95+ per cent of HCV patients regardless of their genotype. These three Perfectovirs represent the final phase of HCV treatment development and all would seem ideal for community prescribing, with no need to check for HCV genotype, no safety concerns and

no need for any monitoring during treatment.

They provide the opportunity to eliminate HCV, provided we can improve diagnosis rates and access to DAA therapies. Pharmac needs to fund at least one of these regimens if it seriously wants to embark on an elimination strategy for New Zealand. The only factors that will determine the time needed to eliminate HCV from New Zealand will be the numbers who remain unaware of their HCV infection and the ability to deliver treatment to those diagnosed (so called ‘linkage to care’).

Following an example Australia has the best HCV treatment model to adopt. More than 90 per cent of the estimated 250,000 people infected with hepatitis C in Australia have already been diagnosed. This has been achieved through strong patient advocacy (from the Australian Society for HIV, Viral Hepatitis and Sexual Health Medicine) as well as Government-funded, targeted testing in high-risk groups (including prisoners and people who inject intravenous drugs). Through PBAC’s (Pharmaceutical Benefits Scheme) decision to fund DAA therapy in the community for everyone, irrespective of genotype, in March this year, almost 50,000 people have already been treated in Australia. It is very likely that HCV will be eradicated from Australia within five years.

In the US, the Government has made HCV testing, by GPs, of all baby boomers mandatory.

In conjunction with increased public awareness through television and newspapers, this has dramatically increased diagnosis. However, a large study presented at AASLD reported that less than 10 per cent of those newly diagnosed patients are actually receiving antiviral treatment.

This breakdown in ‘linkage to care’ is because in the US, patients must go to the treatment centres located in the large inner-city hospitals, rather than have the treatment delivered in the community. It is clear which model we must follow here in New Zealand. page 9

feature

Nearly 1,000 people accessing major advancements in hepatitis C treatments

Written by: PHARMAC Deputy Medical Director, Dr Bryan Betty

Photo: Pharmac

Viekira Pak and Harvoni are major advancements in the treatment of hepatitis C. Both medications have cure rates of more than 95 per cent in as little as 12 weeks’ treatment.

Since 1 July 2016 PHARMAC has been funding these exciting medicines which give people the chance of a cure. It’s great to see that nearly 1,000 people have received funded access to these medicines so far, with an increasing number of people getting access from their general practitioner.

Harvoni has been funded for people with hepatitis C who are very ill, and have end-stage liver disease, regardless of the type of hepatitis C they have.

Viekira Pak can be prescribed to the estimated 27,500 New Zealanders who have genotype 1 (the genotype that responds to the medication) of the hepatitis C virus – which makes up about 57 per cent of people with hepatitis C. It’s important that people spread the word about hepatitis C. There are about 50,000 people in New Zealand with this illness, but 30,000 people are living with this illness and don’t know it. The more people who are able to be treated, early, the better it is for everyone. page 10

People at risk of hepatitis C could, in the past have: • • • • • •

injected drugs spent time in a country where hepatitis C rates are high been to prison had a tattoo or body piercing using unsterile equipment had a blood transfusion or organ transplant before 1992 been born to a hepatitis C-infected mother

feature

We want people at risk of hepatitis C to get tested by their GP. Getting tested is easy and the earlier people are diagnosed the earlier they can be treated. With the treatments now available, the prognoses are much better than they used to be.

In the past, these types of medicines would have only been available through a specialist in a hospital, but since 1 October 2016, general practitioners have been able to help their patients directly by prescribing these medicines. PHARMAC has worked hard with general practice to bring them up to speed with the ins and outs of treating hepatitis C, and the response from general practice and patients alike has been encouraging.

There are many benefits from having access to these treatments in the community. For people with hepatitis C, it means they can get the level of care they expect, but in a place closer to where they live, in a setting that is more comfortable and with a lot less stress – which is important when already having to deal with a tough situation.

We know that people with hepatitis C would like wider funded access to these treatments – PHARMAC would ideally like this too. Funding

these treatments for all genotypes would be a substantial commitment – at current prices it would cost over $1 billion – more than the entire budget PHARMAC has to fund medicines in New Zealand.

PHARMAC will continue to work with the suppliers of these medicines and keep looking towards other treatments for hepatitis C. More information on these treatments is available on the PHARMAC website.

If you have any questions, please contact us on enquiry@pharmac.govt.nz.

For patients: https://www.pharmac.govt.nz/medicines/ my-medicine -has-changed/hepatitis-ctreatments/#patients For prescribers: https://www.pharmac.govt.nz/medicines/ my-medicine -has-changed/hepatitis-ctreatments/#prescribers

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Elliot’s story Elliot Freer, 62, lives in the rural Northland community of Maungaturoto. On June 13, 2016 he received a liver transplant that undoubtedly saved his life. Prior to the transplant, he had liver cancer as a result of the hepatitis C virus and the doctors predicted that without a transplant he would not have survived another month.

Elliot knows first-hand the effects of more traditional hepatitis C treatments. Before the arrival of DAAs, the only funded treatments in New Zealand were interferon and ribavirin. He has been through interferon treatment twice in the past, at the same time as raising four children on his own. Both treatment cycles didn’t work and had severe side-effects.

He had lived with hepatitis C genotype 3 for more than 30 years.

Thanks to the new-generation treatment and a successful transplant at the New Zealand Liver Transplant Unit, Elliot is now recovering at home and has a positive outlook on his future.

Elliot’s story is particularly unique. He was the first person in the world to be treated with Epclusa, a new-generation medication, directly after receiving a liver transplant.

Elliot received Epclusa through a clinical trial at the New Zealand Liver Transplant Unit. Epclusa (Sofosbuvir/Velpatasvir) is a pan-genotypic medication, meaning it treats all genotypes of the hepatitis C virus. Elliot began a 4-week course of the medication directly after the transplant and was cured of the virus within 3 weeks. Epclusa is not yet available in New Zealand, but it’s hoped it will be funded within the next few years.

Viekira Pak, a new-generation DAA (Direct Acting-Antiviral), was funded recently in New Zealand to treat hepatitis C genotype 1. The medication has high cure rates, short treatment duration and minimal side-effects. Elliot says it would be amazing to get a DAA funded in New Zealand that treated all genotypes of the virus.

“It would bring a lot of hope for many people.”

While Harvoni is funded in New Zealand to treat all genotypes, access is restricted to people with severe liver disease. page 12

“I spent one and a half months in the transplant house. It should have been three months but because the transplant was so successful I got to go home early.”

Elliot shared his gratitude for the support he’s had over the years.

“I’m so grateful for my partner Liz. She’s been there right the way through and has been a great support for me.”

Elliot enrolled with the Foundation in the late 1990s after a blood test revealed he had hepatitis C. He visited his doctor after becoming very sick and was shocked to learn he had contracted hepatitis C about 20 years earlier.

Elliot says The Hepatitis Foundation monitored him for many years. “The wonderful thing is to know that you’re actually being watched over for all those years. When a Foundation nurse was in Northland they would always visit me. It’s nice to know that there is a solidarity and you are not the only one with hepatitis C, because

you can get lonely and depressed at times.”

He is also very thankful for the New Zealand Liver Transplant Unit, where he received his transplant. “The transplant saved my life.”

“Having a transplant has put a new perspective on my life. I feel really lucky and privileged and I think that has really grounded me.”

‘No worries’ going forward While Elliot’s battle with cancer is not over yet, he is incredibly optimistic about the future. He has been diagnosed with prostate cancer but is going to take each day as it comes. “Every moment is precious. Having a transplant has put a new perspective on my life. I feel really lucky and privileged and I think that has really grounded me.”

Elliot says maintaining a healthy diet both during and after the transplant was very important to him. He follows a diet based on

the ancient Indian practice of Ayurveda, where he eats according to his body type. Elliot also credits his positive attitude to his work. He is a carver of swamp Kauri. “My workshop is somewhere I can go and heal myself in a strange way by being close to the Kauri. With my wood carvings there is a very strong connection with carving something that is 44,000 years old.”

Elliot has been carving swamp Kauri since he moved to Maungaturoto. “I was lucky enough to be near the Kauri Museum when I moved up here. I got involved with the museum and my love for Kauri started there. I started carving really big swamp Kauri pieces and now I sell my work on Facebook (see Little Wing Studio).

Prior to wood carving, Elliot used to carve bone in the late 1980s. “I used to teach bone carving at the Northland Polytech. Of course, now there are so many imported bone carvings that it is hard to make a living off that. Swamp Kauri carvings are really unique to the Northland area because that’s where they mainly grow.”

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Photo: supplied

personal story

Fungisai’s story My hepatitis C journey began when I was born in Africa 50 years ago. I had a really weak immune system growing up and the hospital was like my second home. Back then a nurse would fill up one injection to share between two, three or more people. I suffered whooping cough, constant nosebleeds and a ruptured appendix which required surgery.

When I recovered, I became a competitive athlete. I did throws, sprints, jumps and long distance running.

I came from a large family where sharing was the order of the day. Uncles, aunts, cousins would forget their toothbrushes or razors and just grab anyone’s from the cupboard.

Time passed, I got married and had my babies in hospital. Two of them were via caesarean section.

Madness started in Zimbabwe and I migrated to New Zealand. It was a hard time. I was homeless for the first time. A friend took me in.

Settling into Wellington, I had no choice but to work anywhere. I worked as a handywoman, an industrial cleaner, laundry worker, dishwasher, and nurse’s aid. I did any job to survive. Mostly these jobs involved very hard physical work. In two years, I changed jobs six times and moved house six times. Back home I had moved twice and kept one job for 10 years.

In 2006 I was working as a health promoter in the area of HIV and AIDS. I did a lot of reading about infections and viruses, and one day I read about the hepatitis C virus. I insisted on getting the test after reading about how hospital page 14

conditions in Africa could put people at risk. I was feeling tired and had the serious condition of brain fog which are both symptoms of liver disease.

When I got the result, the nurse was very sorry to be delivering this message to me. I was not sorry to get a positive result from her. I understood from my reading that I had been put at risk in clinics, hospitals and schools where sharing of needles and theatre equipment were the order of the day. So there I was, with my positive result as calm as ever, laughing off my fears, comforting the nurse instead of the nurse comforting me. I was, however, fearful of the condition my liver might be in and angry for the 20 years I spent drinking like a fish and almost drinking myself to the grave. I began to fear death and wish I had taken more care.

I then moved to acceptance. Yes, I had it, so what? This disease happens to affect human beings and I am a human being who happens to be infected. I had to accept it, and after that,

personal story do something about it. Within that first month of my diagnosis, my journey took a different turn. I found help in the form of a computer.

I Googled and found the Hep C Australasia (www.hepcaustralasia.org.au) support site. I also got support from The Hepatitis Foundation of New Zealand.

“I was feeling tired and had the serious condition of brain fog which are both symptoms of liver disease.”

I started to read information from the site. I met a lot of good people online and got help.

I started asking questions of my doctors. I demanded to see a specialist; more blood tests followed. Finding out that I had genotype 1b was another blow. There were no real answers for me, so armed with knowledge I got from the website, I demanded treatment.

I started treatment (pegylated interferon) in January 2008. The side-effects were bad but I managed them. I have fought many battles in my life – poverty, hunger, wars and discrimination. I don’t go down easily. I took treatment for 12 months. I had to go home to Africa for the last three months to be cared for as I could not manage. My family did a great job. One day I went to bed and could not get up. I only gained my strength after two weeks of lying on the bed. When I managed to get out of bed, I had lost 30 kilos. I looked frail. I had itchy rashes all over my body. I kept scratching.

I managed to clear the virus. I was very happy as I felt I had my life back.

Now I feel healthy. I don’t feel tired anymore.

My brain fog is not as bad as it was before. I managed to study Public Health and Project Management. In 2011 I moved to Australia. I

have now settled in Brisbane and have started Utano. Utano is a Health and Human Services Consulting firm that provides culturally appropriate policy and program advice. I can link my lived experience and academic knowledge to my work.

On 1 March 2016 the Australian Federal Government listed new hepatitis C medications on the PBS (Pharmaceutical Benefits Scheme).

The listed medications are sofosbuvir + ledipasvir (Harvoni), sofosbuvir (Sovaldi), daclatasvir (Daklinza),Viekira Pak and ribavirin (Ibavyr). These new medications are more effective, have fewer side-effects, can cure over 95 per cent of people and there is no pegylated interferon injection in most cases.

I took interferon for 12 months but the new medications can be taken for as little as 8-12 weeks for most people.

I am disappointed as I missed out on the new easy medications. I just encourage people to go get tested! Find out your hepatitis C status.

Knowing could give you the chance to change your lifestyle, and might mean you can get treatment in time to save your liver. Hepatitis C affects people from anywhere in the world. It just so happened to affect me.

Since July 1, 2016, Viekira Pak, Viekira Pak with Ribavirin, and Harvoni have been funded for many people with hepatitis C in New Zealand.

Visit www.hepatitisfoundation.org.nz or http:// www.medsafe.govt.nz/ to find out more.

In Africa we have the Baobab tree. It thrives despite the adverse conditions, and provides shelter, assistance, resources and meaning to its people. The Baobab is an African symbol of endurance, conservation, ingenuity, creativity and dialogue. Like the Baobab, my experiences have made me strong.

Written by: Fungisai Siggins Website: http://www.utano.com.au/ Facebook: Utano Consulting Services page 15

A day in the life of a Foundation FibroScan Nurse: Kerry Kennedy

Kerry Kennedy has worked as a Community Hepatitis Nurse for The Hepatitis Foundation of New Zealand for more than six years. She plays a key role in providing monitoring and support for hepatitis B and C patients in North Auckland (Orewa to Cape Reinga).

When Kerry isn’t working from her North Auckland home she is visiting patients and health professionals, as well as travelling around the North Island holding FibroScan clinics.

Below Kerry shares a day in the life of a FibroScan Clinic Nurse.

A FibroScan is essentially a modified ultrasound scan of the liver. It is a simple, painless procedure that measures the stiffness of the liver to determine the extent of liver damage.

“A lot of work is put in before the actual FibroScan clinic is held. I look at secondary care letters for each patient, check what genotype page 16

they are as well as check their FibroScan records. When I arrive in the town where the clinic is held I’ll also go visit the clinic if I haven’t been there before. I like to introduce myself to the staff, find out the hours of the clinic, look at the clinic room etc. I’ll put the Foundation’s Talking Hep C magazine in the waiting room, as well as some hepatitis B and C flyers on the notice board.

Before the clinic I ring each patient to remind them about their appointment and reassure

them that a FibroScan is nothing to be nervous about. It’s a very simple, quick and painless procedure. The phone call also provides the patient with an opportunity to change their appointment if need be.

On the day of the appointment the patient also receives a text reminder. When they come into the clinic I’ll check their details including their address and phone number as well as discuss previous results. I’ll take some time to provide education about hepatitis using the Foundation’s Hepatitis C Flipchart. Many people find the education a really important part of the session. It provides patients with time to openly discuss the virus with a health professional in a safe environment.

After the education session I will perform the FibroScan. This involves placing a probe over the liver area and gathering 10 readings of the stiffness of the liver. Sometimes the FibroScan machine won’t be able to get a successful result. This can be for many reasons.

refer them to the Foundation’s Medical Director Dr Chris Moyes for referral to secondary care. I’ll also do extra blood tests and let them know I’ll be requesting an ultrasound (which is different from a FibroScan). If there is a time gap between appointments, I’ll often invite clinic staff to see how the FibroScan machine works if they’re interested.

Many people with hepatitis C are seeking access to DAAs (direct-acting antivirals) which the government funded earlier this year for people with genotype 1. A recent FibroScan assessment is recommended before commencing treatment.

Kerry enjoys many aspects of her position as a Hepatitis Community Nurse, particularly the autonomy of the job, patient contact and her helpful colleagues. “The admin staff and nurses in particular are always happy to help and are a good support for me.”

After the scan I discuss the results with the patient. It’s always important to emphasise the importance of looking after the liver.

If the patient has severe fibrosis or cirrhosis I’ll

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Symptom series: Brain Fog Chronic hepatitis C (HCV) impacts the healthy functioning of the liver. The liver has more than 500 functions, including the removal of harmful toxins and substances from the blood.

When a liver is compromised by the hepatitis C virus, it can no longer remove those toxins efficiently. Toxins left in the body can negatively affect all of the body’s systems, including the brain, which is responsible for cognitive functions (thinking, learning, understanding and remembering) and motor skills.

When researchers looked more closely at the neural pathways in the brains of people with HCV, they noticed poorer cognitive performance.

There appeared to be a breakdown affecting the brain’s ability to send messages back and forth from the basal ganglia to the prefrontal lobe. The patients studied were also at a higher risk of symptoms of fatigue.

successfully cleared HCV with treatment improves over time. Many patients who have cleared the virus remark that it feels as though a cloud was lifted when they obtained a sustained virological response (SVR).

Researchers are constantly looking for additional insight related to HCV brain fog – studies have confirmed that brain fog exists and that factors can increase one’s risk for daily complications related to brain fog symptoms – but additional studies are necessary to pinpoint the exact cause and to make treatment recommendations.

Factors Contributing to Brain Fog Fatigue – Fatigue is one of the most common and most noticeable symptoms of HCV. Patients who are also undergoing interferon or ribavirin therapies can experience insomnia or sleep disturbances. Those sleep disturbances often lead to headaches or moodiness, which can worsen symptoms of brain fog.

Anxiety – Often, those who are diagnosed with hepatitis C experience anxiety about the infection, symptoms, and/or treatment. That anxiety can cause a patient to feel edgy or irritable, which can worsen symptoms of brain fog.

While we don’t know the exact contributors to brain fog (note, other HCV symptoms and treatment can both contribute to brain fog) researchers have found distinct differences in the brain scans of people without hepatitis C compared to those who have the virus. It’s also been found that symptoms of brain fog appear more often in individuals who have advanced stages of hepatitis C and/or have cirrhosis of the liver.

The good news is that research tells us the symptoms of brain fog in patients who have page 18

Sadness or Depression – Sadness or depression are common symptoms when someone has been diagnosed with, and/or is undergoing treatment for, hepatitis C. Many HCV treatment regimens can also worsen symptoms of brain fog. While those feelings typically subside soon after treatment ends and an SVR is achieved, it’s important you talk to your doctor if you are sad or depressed, because they may be able to prescribe antidepressants or suggest alternative therapies.

Sometimes relief is as simple as changing medication or dosage, or looking at additional therapies and approaches, which may include:

Hydration

Exercise

Drinking 6-8 glasses of water daily is key to helping your body flush toxins and operate efficiently. Try increasing your water intake or replacing other beverages with a glass of water.

Regular, daily exercise naturally increases cognitive ability. Try getting 20-30 minutes of light exercise daily.

Diet Eating a diet rich in whole grains, fruits, and vegetables while avoiding foods that are hard on your digestive system, such as sodium, sugars, and fat, will improve your body’s ability to function effectively.

Try adding more vegetables, lean meats, chicken and fish, beans, nuts and seeds into your diet.

Stress Reduction Meditation, mindfulness practices, yoga, deep breathing exercises, and other complementary, holistic therapies all reduce stress and improve mental functioning. Try a couple of those activities, and pick one which is right for you.

Better Sleep Habits Poor sleep quality, insufficient sleep duration, and sleep disturbances all interfere with brainpower. Try getting 6-8 hours of uninterrupted sleep per night.

As is the case with any new or increased symptom you’re experiencing, always contact your doctor or nurse before altering your regimen. Your doctor or nurse will be able to determine the best course of action to help reduce or alleviate your symptoms of brain fog.

Source: https://hepatitisc.net/living/hepatitis-c-symptoms-brain-fog/ Written by Jenelle Marie Davis, Founder & Executive Director of TheSTDProject.com. page 19

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.

The Hepatitis Foundation of New Zealand Alcohol and Drug Helpline 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