talkinghepC: Autumn 2016, edition 16

talkinghep

Do you experience nausea? Try these tips on coping with the symptom Personal importation: How safe is it?

Autumn 2016: Edition 16

Personal story: I participated in a clinical trial, now I’m cured!

Hi Everyone Welcome to our 2016 autumn edition.

Firstly, we are delighted the Ministry of Health has agreed to fund this magazine for another year until the end of 2016. We do also provide this magazine online, so if you no longer wish to receive a hard copy please simply email us at talkinghepc@hepatitisfoundation.org.nz. If you want to view this magazine or previous editions online you can find them at: http:// www.hepatitisfoundation.org.nz/ In this edition we have included a special feature on the personal importation of new hepatitis C treatments. This concerns the second generation direct-acting antiviral (DAA) treatments for hepatitis C, which have a cure rate of over 90 per cent after 12 weeks and generally produce few side-effects. Because Pharmac doesn’t currently fund these, a number of people are legally importing cheaper generic versions as a means to access cure.

This edition provides information and advice from Professor Ed Gane, a leading New Zealand hepatologist, and a story on Dr James Freeman, who runs the online FixhepC Buyers’ Club from Tasmania. There is also an interview with a person who was cured through personal importation of treatments from this source.

While it may be legal and currently the only affordable pathway to get access to DAAs, professor Gane points out several reasons to be cautious about importing treatments from overseas. These include ensuring the imported medication is authentic and safe, and making sure the treatment and dosage is right for you. If you are considering personal importation of treatments, we suggest your first step should be to speak to your GP and asking to be referred to a specialist who is experienced in assessing or treating hepatitis C. Please refer to our website for further advice: http://www.hepatitisfoundation.org.nz/ A new model for the hepatitis C services has been initiated by the Ministry of Health and will be rolled out by regional DHBs from July 2016. We hope to provide more information as this becomes available.

This month the Foundation is saying goodbye to Kate Sutcliffe, our founding magazine editor, who is leaving our team to be a full-time mum to her young son. We are also farewelling one of our long-time community hepatitis nurses, Ann Hornell. Ann has worked hard to develop our viral hepatitis and FibroScan programmes over recent years. Kate and Ann, we wish you well. Your professional and personal contribution will certainly be missed.

Kelly Barclay Acting Chief Executive Officer 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: talkinghepc@hepatitisfoundation.org.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.

contents

8 • • • •

PERSONAL IMPORTATION:

What is it?

Professor Ed Gane provides advice What pathways are out there?

Patient story: Tina’s experience

12

News............................................................................. 4 Hepatitis B news....................................................... 7

PERSONAL STORY: GRANT

I lived with hepatitis C for 20 years, but now I’m cured

Feature: Personal importation............................. 8

Personal story........................................................... 12

Feature: Nausea and loss of appetite ................. 14

14

Liver Series #3 continued: Nutritional

SYMPTOM SERIES:

support in chronic liver disease.............................. 16

Nausea

Research...................................................................... 18

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

16

DR FRANK WEILERT: Malnutrition and chronic liver disease part B

page 3

news Australian Government funding ground-breaking hepatitis C treatment In March 2016 the Australian Government began fully funding new-generation hepatitis C medicines, giving the estimated 230,000 Australians living with the virus full access to life-saving medication.

The drugs, which previously cost $1,000 a pill or $100,000 AUD for a 12-week course of treatment, are now available for just $38.30 (for a full course) for general patients and $6.20 for concessional patients.

Everyone who has been diagnosed with chronic hepatitis C, and who has had an infection for more than six months, is eligible to receive the medicines, regardless of their stage of disease.

The funded medicines are sofosbuvir and ledipasvir (Harvoni®), sofosbuvir (Sovaldi®), daclatasvir (Daklinza®) and ribavirin (Ibavyr®).

The break-through drugs, known as directacting antivirals (DAAs), have a success rate of more than 90 per cent, work faster, are less invasive and have few side-effects compared to other medications.

Treatment duration can be as short as eight weeks. However the length of treatment varies per patient, depending on the extent of liver damage and whether the person has had treatment in the past. Different strains of the virus (genotypes) are also treated with different medications.

The Australian Government will work with state and territory governments to make the treatments available to inmates in prison, where hepatitis C rates are typically very high.

GPs are able to prescribe these medicines in (or following) consultation with a specialist, or a specialist can independently prescribe treatment. It is hoped that in time the number of new diagnoses will drop from 10,000 a year page 4

and the virus will eventually be eradicated from the country.

The move makes Australia one of the first countries in the world to publicly subsidise the drugs for its entire population, regardless of a patient’s condition or how they contracted the disease. The funding will cost the Australian Government more than $1 billion.

Source: Fairfax Syndication website

The Hepatitis Foundation of New Zealand congratulates the Australian Government on its decision to fund hepatitis C treatment.

Kelly Barclay, acting CEO of The Hepatitis Foundation of New Zealand, welcomes this news.

“This announcement is going to change the lives of hundreds of thousands of Australians living with hepatitis C. Soon they will be able to put this disease behind them and get on with their lives.”

Note: New Zealand’s drug-buying agency Pharmac is currently seeking clinical advice as to whether the drugs should be funded here, but no decision has yet been made. The Hepatitis Foundation of New Zealand is supportive of Pharmac’s negotiations.

“In the meantime,” says Kelly, “the priority in New Zealand is to continue to find those people living with hepatitis C. Around 50,000 people in New Zealand have the virus but only 40 per cent of them are diagnosed.

“The second priority is to provide community assessment and care to ensure patients are not lost while waiting for the new therapies. Fewer than 10 per cent of those with hepatitis C are currently accessing appropriate assessment and care prior to treatment. “

news Tens of thousands unaware they are infected with hepatitis C in New Zealand

About 25,000 New Zealanders are believed to be infected with hepatitis C without knowing.

Many who have contracted the virus decades ago often only start to develop symptoms years later.

Auckland City Hospital liver specialist and Hepatitis Foundation board member Ed Gane is recognised as a world expert in his field. He says hepatitis C affects all ethnic groups in New Zealand. “It’s important for the general public to know that anyone at risk of contracting hepatitis C in the past should go and get tested.

This includes use of any recreational drugs, getting tattoos outside licensed parlours, and receiving any blood transfusions prior to 1992.”

People returning to New Zealand after living in a highrisk country, such as South East Asia, China, Eastern Europe or the Middle East, should be tested. Professor Gane says, worldwide, the number of people with the disease is rising.

Drug Foundation chief executive Ross Bell says there are about 1000 new infections in New Zealand each year and more government support is needed. General practitioners need to do more screening of those people most at risk, he says. “We need to do more to reach those people through the important channels of needle exchange programmes and through people’s primary care provider.”

Kaitaia doctor Lance O’Sullivan says it is great that Dr Gane is highlighting the issue

of undiagnosed hepatitis infection in New Zealand. He screens all his at-risk patients for hepatitis B but, like many doctors, was probably not doing enough testing of hepatitis C, he says. Despite the other demands placed on doctors to screen for illnesses, such as diabetes, there is a responsibility to react to the problem, Dr O’Sullivan says.

Auckland University’s immunisation advisory centre director and general practitioner Dr Nikki Turner says all doctors need to do systematic screening and try to follow up with high-risk people.

Other services could try to screen patients suspected of having hepatitis C as well, Dr Turner says. “Sometimes we have people that don’t attend general practice regularly and turn up at emergency departments and afterhours clinics. These are places that also need to consider systematically looking for these issues.

“Usually after-hours clinics and emergency departments are dealing with the condition that the patient turns up with, but they’re not looking at broader health issues.”

Source: Laura Bootham, Radio New Zealand National page 5

news Ministry of Health dividing hepatitis C services into four regions From 2012 to 2014 the Hepatitis Foundation successfully implemented a community hepatitis C programme in the Bay of Plenty and Wellington sub-region. As a result of the pilot’s success, from 1 July 2016 the Ministry of Health will divide delivery of the hepatitis C programme into four health regions.

The four regions are Northern (Auckland and Northland), Midlands (Taranaki to Tairawhiti), Central (Wellington and lower North Island) and the South Island.

Hepatitis Foundation acting CEO Kelly Barclay says the Foundation will keep those on the hepatitis C programme fully informed of

any resulting changes. “While we expect the current hepatitis C programme to continue operating in the same way in most areas, some people may be given the option to transfer to other health providers.”

The Foundation, regional DHBs (District Health Boards) and the Ministry of Health are working together to ensure the programme is a success and that those with hepatitis C continue to receive support. The programme will provide an integrated service of hepatitis C identification, education and FibroScan assessment across New Zealand. It is hoped this will allow for a more efficient service nationwide and improved access to specialist health services.

Free online course explaining liver transplants a success A free online course run by the Centre for Liver Research attracted around 3100 registrations.

The course, Liver Transplants: The Ins and Outs, was introduced at the University of Birmingham, UK in January. The three week course taught participants about the field of liver transplantation and took three learning hours per week. The course covered the history, global story of liver disease and looked at the science behind transplants. Anyone in the world could join the course, which is expected to run twice a year. The next course is planned for July or August 2016.

Course educator Dr Trish Lalor said the feedback from participants has been great. “A lot of patients and their families enrolled and they learnt a lot from talking to each other in the online discussion sections. The articles about being scheduled for a transplant and surgery were popular, as was our interview with Mr Hyde – a liver transplant patient. Many said they would recommend the course and/ page 6

or enrol on our liver disease course too. We had some technical issues with the new subtitling system which was also noted by some so we will iron this out for the next iteration.”

Dr Lalor said a mix of students signed up to January’s course, with the highest number of students from Europe and America. “We did see representation from patients, family members, carers, nurses and other clinical associated staff, as well as a lot of people with a general interest in science and health or education.”

The Centre for Liver Research is one of Europe’s largest liver transplant centres, performing over 200 liver transplantations each year.

People who wish to register their interest in the next course can do so here: https://www. futurelearn.com/register Did you participate in this course? Contact us: talkinghepc@hepatitisfoundation.org.nz We would love to hear what you thought.

news: hepatitis B Hepatitis Foundation launches South Island hepatitis B programme The Hepatitis Foundation of New Zealand has launched a community-based hepatitis B follow-up programme in the South Island.

Fleur Easter, the Foundation’s South Island Community Hepatitis Nurse, is kick-starting the programme by working in partnership with local health professionals to educate and support people with hepatitis B. Fleur’s role will initially involve working closely with general practices, specialists and other health providers. She will also focus on educating patients and family members about taking care of themselves with chronic hepatitis B, through running a regular community-based clinic and visiting people in their homes.

Fleur says it is important to optimise prevention and patient health outcomes. “We are looking at education and decreasing people’s risk of potentially developing more serious liver complications.” Fleur is based in Christchurch initially, but in time will extend services to the wider South Island community.

About 100,000 New Zealanders have chronic hepatitis B, and about 60,000-70,000 people are unaware they have it. The Foundation’s hepatitis B programme is funded through the Ministry of Health. The Foundation and the Ministry have been working with healthcare providers in the North Island for 15 years.

Fleur has been touching base with local general practices over the last few months and says feedback from health professionals and patients has been positive. “We are here to support health professionals and their patients.

It’s about working together.”

Fleur has worked in both primary and secondary care and says her love for nursing stems from when she was a young girl. “I have always

Fleur Easter will operate regular clinics.

been very passionate about health. I also really love to work with families who don’t have the privilege of being able to access health care as easily as some people can. The ability to go into people’s homes and offer education motivates me.” As well as being passionate about her job, Fleur is extremely proud of where she comes from. “I’m a born and bred Cantabrian who is very proud to be a part of this new hepatitis B programme in the South Island.”

Hepatitis B is spread through blood-to-blood contact and body fluids and is endemic in New Zealand. This virus is one of the main causes of liver cancer in New Zealand, however in most cases, liver cancer is preventable if detected early.

It is recommended people get tested for hepatitis B if they are over 25 years and of Māori, Pacific or Asian ethnicity. Medical professionals say there was a huge gap in immunisation before 1987, when a hepatitis B vaccine programme for babies was established.

That means many adults - in those groups in particular - are not protected. Other risk factors include living with someone who has hepatitis B or people whose mother or close family member has hepatitis B.

page 7

Kiwis going abroad for hepatitis C treatment Written by Professor Ed Gane, New Zealand Liver Transplant Unit, Auckland Hospital.

Over the past year, 250 New Zealanders developed liver failure, another 150 developed liver cancer, and 200 died. These numbers are projected to triple by 2030. These complications are preventable by eradication of hepatitis C through successful antiviral therapy.

Currently, the only funded hepatitis C treatment in New Zealand is 6 to 12 months of injected pegylated interferon plus ribavirin tablets and, in patients with HCV genotype 1, an additional tablet Boceprevir. The treatment works by stimulating the patient’s immune system which unfortunately creates severe side-effects. This prevents its use in patients over the age of 65, as well as anyone with advanced cirrhosis or severe psychiatric or medical problems.

Less than 1 per cent of infected New Zealanders are currently receiving this treatment each year and only 50 per cent of those are cured. This low treatment uptake and success rate means that current treatment has no impact on the current and future health burden of hepatitis C in New Zealand.

Over the last two years, Medsafe, the New Zealand Drug Regulatory Authority, has approved several new drugs called direct-acting antiviral (DAA) agents. When combined together, DAAs offer the possibility of a very simple, short-duration, well tolerated therapy, which cures more than 95 per cent of patients regardless of their genotype, prior treatment, and whether or not they have cirrhosis.

Pharmac’s negotiations Pharmac is currently working with several pharmaceutical companies to find a way to fund these new treatments for all New Zealanders living with hepatitis C. However, the very high page 8

cost of the new DAAs may initially limit funding to those at greatest need, who cannot wait. Funding DAAs for the 250 New Zealanders each year, who develop decompensated cirrhosis, should prevent death and rapidly reduce the demand for liver transplantation.

Expanding DAA access to all patients with cirrhosis should prevent future decompensation and liver cancer thereby improving life expectancy. Finally, expanding access to every New Zealander with hepatitis C, if combined with increased diagnosis, could eliminate the virus within this country by 2025.

The high costs of funding DAA therapies for all 50,000 hepatitis C-infected New Zealanders will require discounting from the pharmaceutical companies and additional Government funding for hepatitis C treatment. However, unlike many other chronic diseases, this additional funding should only be required for 1015 years, until hepatitis is eliminated from New Zealand.

The Australian Government is currently rolling out the first national Hepatitis C Elimination Strategy.

As of March 1, 2016, every Australian living with hepatitis C became eligible to receive DAA therapy through his or her specialist or GP.

Medications out of reach for many Over the past year, two pharmaceutical companies (Gilead and BMS) have provided compassionate access to approximately 100 New Zealanders with liver failure or other life-threatening complications of hepatitis C, in order to prevent liver transplantation and death. Another 500 New Zealanders received DAAs through clinical trials, mainly in Auckland or Christchurch. For the majority of New Zealanders, who aren’t sick enough for the compassionate supply programme

personal importation of DAAs

or who can’t participate in clinical trials, the full cost of purchasing the DAAs here in New Zealand is $60,000-$90,000 for a complete course.

Personal importation: How it works Many who do not want to wait until DAAs are funded by Pharmac are now looking at importing generic versions of these drugs from overseas.

This demand has been driven in part by the recent media publicity about the FixHepC Buyers’ Club, a web-based organisation in Tasmania. The organisation offers online ordering of generic versions of sofosbuvir (Sovaldi), ledipasvir and daclatasvir, either separately or as a single tablet for under $5000 for a complete course – a saving of more than 90 per cent.

Another option is to get medication through Greg Jefferys, also based in Tasmania, who provides contact details to suppliers in India and Bangladesh.

In addition, multiple Indian and Bangladesh generic companies are now marketing medication directly online.

Purchasing drugs over the internet is not illegal, provided that the person has a prescription from a registered medical practitioner, either in New Zealand (in which case the medication can be couriered), or in Australia (in which case the person can travel to Australia to pick up the script and medication and bring it back to New Zealand).

Personal importation: the risk Even so, caution is still needed when considering personal importation. Firstly, the individual needs to consider where the drugs come from and whether they are authentic. Gilead has licenced 11 generic companies in India to produce sofosbuvir (and very soon the ledipasvir/sofosbuvir combination tablet) for the local markets. Strict quality control from Gilead ensures that these drugs are identical to those produced for European and American

markets. However, drugs sourced from China and Bangladesh are manufactured in facilities that are not under licensing agreements from Gilead and therefore there is no guarantee that the drug manufacturing process is the same and that the final product is authentic.

In the past, some generic drugs made in China have been contaminated by other chemicals or drugs. Some have been diluted with reduced activity against hepatitis C whilst others have had absolutely no activity at all against the virus, i.e. have been fake.

Of particular concern is the recent availability of generic ledipasvir from Bangladesh (either separately or coformulated with sofosbuvir). Unlike the manufacturing of sofosbuvir, which is relatively simple, ledipasvir is very complex, requiring almost 20 separate steps. One critical intermediate step is Spray-Drying Dispersion, where the ledipasvir chemical is mixed with another substance to improve solubility. Without this step, the final ledipasvir drug will not be absorbed when taken by mouth. Spray-drying for ledipasvir requires large purpose-built facilities, of which only a few exist in the world and none in Bangladesh.

It therefore seems likely that generic combinations of ledipasvir and sofosbuvir from Bangladesh will only contain active sofosbuvir. As a result, although the hepatitis C will disappear during treatment (because of the active sofosbuvir), it will relapse after treatment is stopped (because of the lack of active ledipasvir). Secondly, individuals need guidance on what treatment is best for them. page 9

The Buyers’ Clubs Although the first “one-size-fits-all” sofosbuvir/ velpatasvir treatment will be approved within the next year, until then, the recommended treatment and duration will vary according to a number of different patient and viral factors.

Although the FixHepC Buyers’ Club provides a useful cheat sheet, each individual should discuss the matter with their hepatitis specialist or GP before deciding which treatment is best. This same doctor should provide on-going supervision during treatment – regular blood tests to monitor anaemia are needed in those individuals taking ribavirin.

A final blood test for hepatitis C RNA (genetic material) at 12 weeks after treatment should always be performed to ensure that the individual is cured.

Finally, importing generic drugs will cost several thousand dollars.

Anyone contemplating purchasing generics should first have a recent FibroScan. If this demonstrates only mild liver disease, he or she should consider the option of waiting for Pharmac funding, which should eventuate within the next five years and well before the development of complications.

The Hepatitis Foundation of New Zealand supports wide access of DAA therapies for all New Zealanders living with hepatitis C and supports Pharmac’s work towards funding DAA therapy for all New Zealanders living with the virus.

The Foundation recommends that anyone considering importing generic drugs discusses the benefits and potential pitfalls with their doctor.

page 10

Pictured: Dr James Freeman/ GP2U Telehealth

The drugs used to treat people infected with hepatitis C genotype 1 are very different from those needed for genotype 2 or 3 or 4. Individuals with cirrhosis, or who have previously been treated with interferon are more difficult to treat and usually need 24 weeks treatment or the addition of ribavirin, whilst others may need only 12 weeks or sometimes only 8 weeks with no ribavirin. Currently, customs allows the importation of only 12-weeks’ supply so treatment for 24 weeks may require two separate prescriptions.

The Foundation is aware of several online personal importation pathways, including one based in Hobart, Australia, which has been used by more than 1,000 people, including 100 kiwis over the past year.

The FixhepC Buyers’ Club, created by Dr James Freeman, assists people with buying, testing and importing hepatitis C medication from countries licensed to produce generic drugs. Medication is imported from suppliers in China, Bangladesh and India. It is also certified on arrival in Australia by the measurement institute, National Association of Testing Authorities, Australia.

Dr Freeman spoke to talkinghepC about personal importation.

Dr Freeman, who is also the founder of online GP service GP2U Telehealth, says his buyers’ club began with one patient. After reluctantly assisting one patient with personal importation in March 2015, more and more people came asking for help. After hearing last year that people were trying to illegally import medication into Australia, he thought “it was logical that there should be a degree of medical input behind it” when it came to personal importation.

Dr Freeman says the Buyers’ Club uses a limited number of suppliers. “Supply chain integrity is important… there certainly is fake medication around and in time there will be a lot of it.” When the medication is imported, it is run through a series of character defining tests. “It lets you see how pure something is. We have absolute certainty about what the medication is before it is given to the patient.”

Dr Freeman says there is still considerable work to do to make the medication more freely available.

Tina’s story

personal importation of DAAs

Tina is a 43-year-old anaesthesiologist from Dunedin. After a very minor accident at work, she never would have imagined she had contracted hepatitis C.

While Tina had had high liver function tests for years, these were thought to be a result of having a liver laceration from a serious horse riding incident when she was 19. “I didn’t fit the profile of someone at risk of contracting hepatitis C, so I was never tested for it.”

It wasn’t until 2012 that Tina was diagnosed with hepatitis C, genotype 1, after relocating from Auckland to Dunedin and going for a health check.

Tina says she was “devastated” when she found out.

“I felt like my life was over. I felt like everything had been lost. I was in the process of buying a house. I didn’t know, because of what I do, whether I would have to leave my job.”

Tina says she was fortunate to have a supportive employer, and continued to work full time throughout her diagnosis and treatment. However, she struggled to tell anyone other than her employer. “I couldn’t talk to anyone because there is so much stigma out there in the world to do with hepatitis C. If you google hepatitis C the first thing you see is ‘intravenous drug use’…. But the truth and reality is that the risk to health care workers of contracting hepatitis C is far greater than the general population.”

Tina developed mild fibrosis in her liver and says

Photo: Ruby Harris

While handling a glass drug vial at work in 2010, she cut herself through her gloves without realising. She now suspects that at some stage she came into contact with contaminated blood.

It wasn’t until she arrived home that evening that Tina noticed a tiny cut on her finger. Later she found out that the patient whose blood she came into contact with was hepatitis C positive. A few weeks on, Tina became very ill to the point she couldn’t get out of bed. “I’m the type of person who doesn’t normally get sick. It was at the time when swine flu was going around. I went to my doctor several times over the course of a couple of weeks.

I was prescribed a couple of different antibiotics.

Eventually I came right and carried on as normal, not giving it a second thought.”

the symptoms had a huge impact on her life. “I was always tired, lethargic, incredibly irritable and despondent. I didn’t look forward to life anymore.

At the time I felt really vulnerable but my job is to look after the most vulnerable people and hold their hand. Really it was me who needed my hand held.”

Now she has overcome the virus after being treated with generic Harvoni. Tina purchased the medication for $2,700 through the FixHepC Buyers’ Club in Australia. While she was sceptical of personal importation at first, she says going through the process was an easy choice. By day 35 of treatment her liver function tests had returned to normal. “It’s amazing to wake up and look forward to the day. I’m loving life again, I cannot believe it. I didn’t realise how sick I was, I really didn’t.”

Tina’s believes all hepatitis patients deserve to be cured and says they should not lose hope about getting cured. “Don’t punish yourself for some stupid thing that you did when you were a teenager, when you had no idea what it was you were doing.” She suggests that people going through treatment for hepatitis C have medical monitoring and a support person to assist them through the course. “Even though it is a miracle cure there can be serious interactions with particular medicines and it is also a very emotional journey.”

In her spare time Tina enjoys spending time with her white German Shepherd, creative writing and researching about her job. page 11

Grant’s story Grant is a 56 year-old business development advisor living in Hamilton. Unexpectedly one evening in 1996 he received a call from his health provider telling him he had hepatitis C. He had given blood earlier and they had detected the virus in his blood.

Grant said he was shocked when he found out.

“I didn’t know what it was, I just said ‘what’s hepatitis C?’ When I learnt what it was I felt frightened. I thought it was going to kill me eventually. There wasn’t much knowledge about it at the time so I went to my GP. He was very supportive, he said ‘it’s not going to end your life now but you have to be very careful.’”

Grant is married with two sons, now aged 18 and 24. He says having hepatitis C made him worry if he would be around to see his kids grow up.

It was absolutely an easy choice to participate in a drug trial. It was like I had won the lotto He has no idea how he contracted hepatitis C, but says he started showing symptoms when he was just 21-years-old. “I spent some time in the UK and I was injured over there. The hospital staff were very busy. I suspect that they used dirty instruments – the guy next to me was pretty messed up! I also could have contracted hepatitis C when I worked in the prison service. But I have no idea. When I was page 12

in the UK though I got very ill. I was very yellow – had jaundice and stuff.” In more recent years subtle symptoms surfaced. Grant often had trouble concentrating and says he would lose his train of thought. “That was unusual for me.

The symptoms were creeping in. I would get a bit of anxiety and often feel really tired.”

Grant gratefully described how he recently cleared the virus after participating in a clinical trial. “I don’t think there are words to describe how I feel. It’s like getting a monkey off your back. When you have hepatitis C you are constantly thinking about it, no matter what you do.” Grant participated in a clinical trial run

by AbbVie in July and August 2015. It required taking three pills at specific times each day for eight weeks. “During the first two weeks the virus had disappeared and my bloods started

personal story

coming up again. Post treatment the virus was undetectable. I’ve just had the final clearance recently – I’m cured!” When Grant was told he was clear of the virus he says he left the office for a walk and thought about how lucky he was.

“It was absolutely an easy choice to participate in a drug trial. It was like I had won the lotto and I had to decide whether I would go and claim the winnings.”

Grant says he had a few minor side-effects while on treatment, including getting an upset stomach. However he says the symptoms weren’t invasive and he felt good enough to continue to work full time throughout the trial.

He encourages people who have hepatitis C to stay positive and to participate in a clinical drug trial if they get the opportunity. “The new treatments have few side-effects, so why wouldn’t you.”

Grant says he hadn’t received treatment until last year, but 15 years ago had the opportunity to receive interferon treatment. He declined the treatment after speaking to a chemist about the side-effects and the probability that he might not be cured. “He said, ‘Do you really want to do this? If your immune system is fighting the virus at the moment let it fight it until something more effective comes on the market, because interferon has pretty aggressive side-effects.’”

Over the last 20 years Grant has had several liver biopsies (when a sample of the liver is taken for assessment) and developed mild fibrosis in his liver. He credits a healthy lifestyle for keeping the virus at bay. “Lifestyle has a lot to do with

it. I’m no saint, I used to binge drink and stuff like that. But just keep yourself healthy, eat the right foods and exercise. Keep in tune with what your body is telling you.”

Many people see it as a dirty disease but it’s not

Grant says the stigma around hepatitis C needs to be removed. “When I found out I had hepatitis C I kept it fairly secret because many people see it as a dirty disease but it’s not. There are a lot of people from different walks of life who have it.

Some people just get it. I only told a few close friends and family. It’s only now later in life that I’ve started opening up about it…. If I can help anybody, that’s the main thing.”

Grant now has a much more positive outlook on life. “I’ve got more energy and I can take things more in my stride now without getting too worked up about little things. Life is good.

It’s got to be.”

“I can think now that I’m hopefully going to be around for some time. With hepatitis C it can get aggressive quite quickly. I think people need to be made aware of the virus, because many people have it and don’t know it.”

page 13

Hepatitis C symptom #8: Nausea

Many people infected with hepatitis C may show no symptoms, however some show flulike symptoms, including nausea.

Hepatitis C may cause periods of nausea which can affect appetite. These symptoms can cause varying degrees of discomfort. Most who experience nausea would describe it as feeling sick to the stomach, and that feeling can range from a mild queasiness to an overwhelming urge to vomit. Others can experience nausearelated digestive symptoms without feeling sick to the stomach, such as pain in the abdomen.

portion of the abdomen. A damaged liver may also have trouble producing enough albumin – a substance that regulates the amount of fluid in cells. When too much fluid builds up in the stomach (ascites), people can feel pain in the abdomen from additional inflammation.

Hepatitis C regimens can also cause nausea in some people. In fact, nausea is one of the most common gastrointestinal symptoms from interferon and ribavirin medications.

Why hepatitis C causes abdominal pain and nausea The liver performs over 500 functions that help regulate digestion and a person’s overall health.

First, the liver produces bile, which helps break down fats in our food. The bile produced by the liver is stored in the gallbladder, and from the gallbladder it is sent to the beginning section of the small intestine, called the duodenum.

When bile reaches the duodenum, it combines with digestive fluids from the pancreas and stomach acids. Bile, digestive fluids and stomach acids all help nutrients enter the bloodstream through the intestines.

Because hepatitis C infection can hinder the liver’s ability to produce bile, the body struggles to digest fatty foods, causing the gallbladder to become inflamed. That inflammation may trigger symptoms of pain in the upper right page 14

Ways to reduce nausea Nausea can significantly impact someone’s quality of life and overall well-being, and, as a result, frequently influences a patient’s decision to discontinue treatment.

When nausea persists or becomes worse, always contact your healthcare provider. Both over-the-counter and prescription medicines are available for nausea but should be used under the supervision of a medical practitioner and with your individual issues considered.

Sources: https://hepatitisc.net/living/symptoms-nausea/, http://www. hepatitisaustralia.com/symptom-management/

Tips for managing nausea

Avoid having an empty stomach. Eat smaller meals more frequently.

Eat when you feel most hungry. For many people this may be at breakfast time.

Avoid eating large meals.

Try eating bitter foods before main meals to improve digestion (e.g. olives or rocket lettuce).

Many people find they do not feel well after having fatty foods or alcohol.

Limit your intake of these.

Do not lie down immediately or within 30 minutes of eating.

Avoid cooking odours where possible. Try seeking assistance with meal preparation or using pre-prepared foods. It can be a good idea to prepare and freeze meals when you are feeling well for use when you are experiencing nausea.

Rinse your mouth with cold water before eating. This can help make food taste more appealing.

Try different foods to stimulate appetite, such as sweet or sour foods.

Ginger, peppermint, spearmint, fennel seed and aniseed teas can reduce nausea, bloating and abdominal cramps. Fresh ginger, ginger tablets or ginger beer may also help.

If nausea and loss of appetite is frequent, persistent or severe, talk to your medical provider.

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Liver Series #3 continued: Nutritional This is part B of the topic looking at malnutrition as a complication of liver disease. In this edition, Dr Weilert discusses the options available to support nutrition in people with liver disease.

Experts recommend the following calorie and protein intakes:

In the previous edition (Summer 2015/16, Edition 15), part A focused on the prevalence, causes and assessment of malnutrition complications.

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Nutritional therapy has two main goals: to improve protein-calorie malnutrition (PCM) and correct nutrient deficiencies. As discussed in part A of this article, PCM is a condition of body wasting related to having a diet deficient in calories and protein.

It is found in 65 to 90 per cent of patients with advanced liver disease (cirrhosis). Eating is the preferable way to improve PCM and correct nutrient deficiencies, but for some people other therapies may be appropriate when they are unable to eat enough to maintain adequate nutrient levels.

These therapies include enteral (tube feeding), parenteral (intravenous feeding), or a combination of these methods.

[Guidelines from: “A Guide for Patients with Liver Diseases including Guidelines for Nutrition”]

Early intervention Getting help and starting therapy in the early stages of malnutrition can improve outcomes. Studies have shown the positive results of nutritional supplementation in patients with cirrhosis. They found that patients receiving a daily supplement of 1,000 kcal and 34g of protein (given as a caseinbased enteral nutrition product) had better outcomes compared with those in the control group; the number of hospitalisations was significantly fewer in the treated group.

Another study demonstrated the effects of oral nutritional support in patients with alcoholic hepatitis. For those patients suffering from severe malnutrition, an inadequate intake of calories was associated with 51 per cent mortality, compared with 19 per cent mortality in patients who received adequate oral nutrition (greater than 2,500 kcal/ day). page 16

•

•

Adequate calorie intake (35 kcal per kg body weight daily) 1.2 g of protein per kg body weight each day in compensated liver cirrhosis 1.5 g of protein per kg body weight each day in decompensated liver cirrhosis and malnutrition

Recent evidence suggests that protein restriction should not be recommended, even in cases of episodic hepatic encephalopathy. Hepatic encephalopathy is an altered level of consciousness resulting from liver failure because the liver is unable to effectively remove toxins from the body.

Distribution of calorie intake Studies have also looked at the effect of eating at intervals throughout the day to distribute the intake of calories. It has been proposed that eating a late evening snack reduces the length of time a patient fasts overnight. In fact, a late evening meal has been shown to improve overall nutritional status and result in significant weight gain. A typical recommendation for patients with advanced liver disease is to consume four to five small meals per day, as well as a late evening snack.

Correcting nutrient deficiencies Nutritional therapy in patients with chronic liver disease should not only focus on treatment of PCM, but should also aim to correct specific nutrient deficiencies. Patients with advanced liver disease often develop micronutrient deficiencies. For example, most patients with advanced liver disease, but particularly those with cholestatic liver disease, are less able to absorb fat, which may therefore affect the absorption of fat-soluble vitamins, such as vitamins A and D. Patients may also have deficiencies of zinc, and several B complex vitamins.

Deficiencies in any of these micronutrients can have far reaching health effects that are not readily

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support in chronic liver disease identified until the symptoms of severe insufficiency arise. However, patients should take caution when replacing these micronutrients as high doses can lead to complications themselves. This is especially relevant for patients with established cirrhosis, who should be advised by a professional dietitian.

Decreased serum vitamin A levels result from fat malabsorption, as well as defective mobilisation of vitamin A from the liver. One of the common complications of vitamin A deficiency is night blindness, which has been shown to improve with short-term vitamin A supplementation for 4 to 12 weeks. Persistent problems with night blindness, despite adequate supplementation, might also result from zinc deficiency. Vitamin A toxicity is a potential risk of vitamin A supplementation. It typically causes elevated transaminase levels in the liver and can eventually lead to cirrhosis, chronic hepatitis, or portal hypertension.

Vitamin D deficiency is another complication of chronic liver disease, resulting primarily from malabsorption, although decreased UV light exposure and inadequate dietary intake might also be contributing factors.

Calcium deficiency results from decreased intestinal calcium absorption. Up to 43 per cent of patients undergoing transplant evaluation have osteoporosis. There is conflicting data on whether vitamin D supplementation improves osteoporosis in patients with advanced liver disease. A proposed guideline is to supplement all patients who have chronic liver disease with calcium (1 g/day) and vitamin D3 (800 IU/day).

Zinc deficiency commonly occurs in patients with cirrhosis and has been implicated in the development of hepatic encephalopathy. Zinc supplementation for three months has been shown to improve mental functioning in patients with hepatic encephalopathy, although other studies show conflicting findings, and the role of zinc in treating hepatic encephalopathy remains controversial.

Conclusion Malnutrition is a well-known complication of advanced liver disease and is associated with severe consequences if left untreated. It is critically important to thoroughly assess the nutritional status of all patients with chronic liver disease and to provide nutritional support in these patients.

Treatment should focus on maintaining adequate protein and calorie intake and correcting nutrient deficiencies. Strategies include the consumption of frequent small meals and a late evening snack to reduce protein breakdown. Malnutrition is a potentially reversible condition that, when identified and treated appropriately, can lead to improved outcomes.

Key points to address malnutrition The following measures can be used to address malnutrition in patients with advanced liver disease: • • • • • •

Adequate calorie intake (35 kcal per kg body weight daily) Adequate intake of protein (1.2–1.5 g per kg body weight daily) Adequate intake of vegetable fibre Regular exercise to maintain muscle mass Timely addition of enteral dietary supplementation Timely addition of branched-chain amino acids

Guidelines from: “A Guide for Patients with Liver Diseases including Guidelines for Nutrition”

References: A Guide for Patients with Liver Diseases including Guidelines for Nutrition:. Retrieved from http://www.drfalkpharma.com/uploads/ tx_tocfpshoperw/F80e_10-11-08.pdf ESPEN Guidelines on Enteral Nutrition: Liver disease. Retrieved from http://espen.info/documents/enliver.pdf

Written by Dr Frank Weilert, Hepatologist at Waikato Hospital.

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research

Coffee consumption linked to reduced liver fibrosis Australian researchers have reported that drinking coffee is associated with lower liver stiffness (reduced liver fibrosis) in people with hepatitis B, hepatitis C and non-alcoholic fatty liver disease (NAFLD). Alexander Hodge and colleagues from Monash Medical Centre in Melbourne, Australia, conducted a study, which also showed coffee drinking can lead to less liver fat build-up in people with NAFLD. Over years or decades, a chronic hepatitis virus infection and NAFLD can lead to serious liver disease, including cirrhosis, hepatocellular carcinoma (a type of liver cancer) and liver failure requiring a liver transplant. The Australian researchers noted as background that in previous studies coffee has been linked to a wide range of health benefits, including a reduced risk of: type 2 diabetes, metabolic syndrome and several types of cancer. Previous research also shows coffee may have a particularly beneficial effect on the liver as it is associated with lower liver enzyme levels and reduced cirrhosis and liver cancer.

It is not yet known whether these benefits are related to caffeine or other components of coffee, such as antioxidants or other phytochemicals. Some studies suggest that caffeine and other chemicals in coffee may dampen inflammation and reduce collagen production.

In this Australian study, liver health was assessed using a FibroScan. A FibroScan uses shear waves to assess liver elasticity or ‘stiffness’.

Higher liver stiffness scores (expressed in kiloPascals or kPa) indicate more extensive page 18

liver damage. A score below 6-7 kPa suggests absent or mild fibrosis (stage F0-F1) while a score above 13-14 kPa suggests cirrhosis (stage F4) in people with viral hepatitis.

The researchers collected data on coffee and alcohol consumption, as well as the type of coffee (instant, espresso, decaf, filtered or boiled). All patients had hepatitis B, hepatitis C or NAFLD and were receiving FibroScans at the Monash Medical Centre hospital clinic between May 2012 and November 2013. They also gathered information about demographic characteristics, weight and body mass index (BMI), smoking and alanine aminotransferase (ALT) liver enzyme levels.

Over 18 months, the researchers evaluated 1130 people, including 529 (47 per cent) with hepatitis B, 434 (38 per cent) with hepatitis C and 167 (15 per cent) with NAFLD. Overall, 57 per cent were men, the average age was 48 years and a quarter were smokers.

Most participants reported that they consumed some coffee, with a median of one cup per day but ranging up to 20 cups daily; 72 per cent reported drinking instant coffee and 24 per cent drank espresso, with only a small number (1-2 per cent) drinking filtered, boiled or decaf coffee. Average daily alcohol consumption was about 5 gm a day.

The median liver stiffness score across all participants was 6.1 kPa, suggesting absent to mild fibrosis. However, people with hepatitis B had lower scores than those with hepatitis C or NAFLD (median 5.3, 7.1 and 7.4, respectively).

The study found that people with hepatitis C who drank two or more cups of coffee daily had a 13 per cent reduction in liver stiffness after taking into account various factors including age, sex, weight, alcohol consumption and smoking – a significant association.

Among people with NAFLD, those who drank four or more cups of coffee daily had a 24 per cent decrease in liver stiffness in an adjusted analysis. Greater coffee consumption showed a trend towards lower Controlled Attenuation Parameter scores (CAP – measures accumulation of fat in the liver) in people

with NAFLD, but this fell short of statistical significance. Coffee consumption had no effect on CAP scores in people with hepatitis B or C. Based on these findings, the researchers concluded that “coffee consumption is associated with less liver stiffness in patients with NAFLD, hepatitis B and hepatitis C, and less hepatic steatosis (fat in the liver) in (patients with) NAFLD.” These findings, they said, “add to the growing body of evidence suggesting coffee may be a beneficial supplement in some liver diseases.”

Source: aidsmap.com

Farewell to...

Kate Sutcliffe – Communications Officer.

Ann Hornell – Community Hepatitis Nurse

Kate has left the Foundation to spend more time with her 10 month-old baby Flynn. She worked at the Foundation for three years before going on maternity leave in April 2015.

She will be missed by the rest of the team.

Ann has made a significant contribution to the Foundation over many years and is a valued member of the team.

The Foundation wishes her the very best for her future and she will be sorely missed.

We wish you all the best!

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.

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