Cirrhosis and chronic liver failure How to manage flu

talkinghep
Spring 2015: Edition 14
Genotypes and
what they mean
How to
manage flu-like
symptoms
Cirrhosis and
chronic liver
failure
Publisher:
The Hepatitis Foundation
of New Zealand
After a somewhat chilly winter, we
hope things are warming up in
your region as spring approaches.
On a positive note, at the recent
World Hepatitis Day summit in
Wellington on July 28th Professor
Ed Gane noted that, if direct
-acting anti-viral treatments
(DAAs) are funded, it will become
possible to eliminate hepatitis C
in New Zealand.
In August Pharmac issued a ‘request for information’ (RFI)
relating to hepatitis C treatments and management. This
suggests they are at least considering the issues around
funding DAAs, a move which right now could help prevent
over 150 hepatitis C-related deaths per year in New
Zealand. The challenge for Pharmac remains how to afford
these therapies.
We certainly hope recent progress towards funding DAAs
in Australia will flow through to New Zealand. Meantime,
we encourage people living with hepatitis C to add your
voice to calls for funding. Our hope is that one day soon
you will be able to access these easy-to-tolerate 8 or 12week treatments and put hep C behind you.
There have been several changes in Foundation staff
recently. After 17 years, our CEO John Hornell decided
to move on, having made a significant contribution to
addressing viral hepatitis in New Zealand. Also moving
on is our magazine editor, Melissa Wood, who is heading
off to the UK on her OE. Melissa has done stellar work
maintaining the high standard of this magazine over the
past year.
We wish to offer our ongoing encouragement and support
to all people in New Zealand living with hepatitis C. If you
would like to share your story as a way to support others,
please contact Debbie Norris at the Foundation 07-5790923 or on 0800 33 20 10.
We hope you enjoy this spring edition of the magazine.
Kelly Barclay
Acting Chief Executive Officer
The Hepatitis Foundation of New Zealand
Editor/Design/Production:
Melissa Wood
Editorial Contributors:
Professor Ed Gane
Frank Weilert
Website:
www.hfnz.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:
[email protected]
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
News........................................................................ 4
8
Feature: Your liver..............................................
Managing
flu-like
symptoms.
6
News....................................................................... 7
Feature: Flu-like symptoms.............................. 8
10
Professor Ed
Gane discusses
genotypes.
As for ‘what to do next’,
there was never any real
doubt about undergoing
treatment.
12
Learn about
complications
of cirrhosis.
14
Feature: Genotypes..........................................
10
Feature: Call for action...................................... 11
Personal story...................................................... 12
Feature: Cirrhosis and chronic liver
failure.................................................................
14
Feature: Differences between men and
women with hepatitis C..................................... 16
Foundation news............................................... 17
Research................................................................ 18
Comings and goings......................................... 19
Contacts and support....................................... 20
page 3
news
Australian hepatitis C inquiry report published
A parliamentary health committee has published a
report after an inquiry into hepatitis C in Australia.
The report by the House of Representatives Standing
Committee on Health is titled The Silent Disease – Inquiry
into Hepatitis C in Australia. The report comprised of more
than one hundred submissions and five public hearings
including input from community support groups and
medical experts. They looked at treatment, testing,
prevention and the cost of the virus.
“The Inquiry has been a landmark moment for Australians
living with hepatitis C. It allowed many people to make
their voice heard and we thank the Committee for
listening and acknowledging the diverse experiences
of people impacted by hepatitis C,” said Acting CEO of
Hepatitis Australia, Kevin Marriott.
The committee has published many recommendations
as a result of the inquiry. One recommendation was to
create two specific campaigns. One campaign would
target those who have a high risk of infection with a focus
on prevention strategies and testing options. The other
campaign would focus on people living with hepatitis
C who may not have sought advice about treatment
options after their initial diagnosis.
programmes significantly reduce rates of hepatitis C
transmission.
The Committee also suggested exploring ways in which
the patient experience in general practice could be
improved for people living with hepatitis C. This included
better information provision, improved treatment
processes and patient counselling.
Hepatitis Australia has welcomed the report but believes
it still falls short in some important areas including
affordable access to new generation anti-viral medicines.
“We are disappointed that the report is silent on
recommendations around new treatment options for
hepatitis C, which have been deemed cost effective and
are now awaiting a PBS listing date. These therapies offer
the opportunity to transform lives and make hepatitis C
a rare condition in our lifetime,” Mr Marriott said.
Source: Hepatitis Australia
The committee found the need for a more robust
reporting and review framework, recommending that
the Department of Health develops key performance
indicators and annual reporting to measure progress
against the targets in the National Hepatitis C Strategy.
The committee recommended a national strategy be
developed urgently to address blood-borne viruses in
prisons. It pointed to evidence that needle and syringe
NHS England boosts funding for hepatitis C treatment
NHS England has agreed on funding for drugs for new
hepatitis C treatments. It allows thousands of patients in
England with hepatitis C-related cirrhosis to access new
treatment options. The NHS in England has increased
the budget for new virological cures for hepatitis C by a
further £190 million. This is on top of the approximately
£40 million which was allocated last year as part of its
early access scheme to treat people with decompensated
cirrhosis.
Richard Jeavons, NHS England’s Director of Specialised
Services, said, “At a time when funding is inevitably
constrained across the NHS this is a huge new
investment; in fact it’ll be the NHS’s single largest new
treatment expansion this year. That’s why we’re also
running a competitive tendering process in parallel, to
seek to bring down the price of these very expensive
page 4
new drugs.”
Peter Moss, a Consultant and Chair of NHS England’s
Infectious Diseases Clinical Reference Group, said, “The
new anti-viral drugs being made available through this
scheme offer a huge improvement in care for patients
with hepatitis C-related liver cirrhosis. Now we are in a
position to cure
the large majority
of patients and so
to prevent further
liver damage and
premature death.”
Source:
nhs.uk
www.england.
news
WHO adds hepatitis C drugs to essential list
The World Health Organization (WHO) published
a new edition of its Model List of Essential
Medicines in May, which included the new
ground-breaking treatments for hepatitis C. The
move opens the way to improve access to the
innovative hepatitis C medicines that show clear
clinical benefits and could have enormous public
health impact globally.
The list is updated every two years by an expert
committee, made up of recognised specialists
from academia, research and the medical and
pharmaceutical professions. This year, the
committee underscored the urgent need to take
action to promote equitable access and use of
several new highly effective medicines, some
of which are currently too costly even for highincome countries. The WHO has said prices for the
new hepatitis C drugs need to drop to make them
accessible to patients in poorer countries.
“When new effective medicines emerge to safely
treat serious and widespread diseases, it is vital
to ensure that everyone who needs them can
obtain them. Placing them on the WHO Essential
Medicines List is a first step in that direction,” said
WHO Director-General, Dr Margaret Chan.
Many governments and institutions around
the world are using the WHO list to guide the
development of their own essential medicines
lists. Every medicine listed has been vetted for
efficacy, safety and quality. There has also been
a comparative cost-effectiveness evaluation with
other alternatives in the same class of medicines.
The WHO’s latest Model List of Essential Medicines
also included several new drugs for cancer and
multi-drug resistant tuberculosis.
Source: www.who.int
Thousands of Sydney dental patients at risk of hepatitis
Up to 12,000 people in Sydney Australia have been
urged to undergo testing for hepatitis and HIV. New
South Wales Health confirmed poor hygiene practices at
four dental clinics in Sydney have put many at risk of the
blood-borne viruses.
Authorities say they are now contacting all patients who
had invasive procedures at the practices during the past
decade. Health experts said the risk of infection was low,
but urged any patients who had surgery or an invasive
procedure at one of the practices to get a blood test as
a precaution.
of NSW.
“These audits showed that there were some problems
with the cleaning, sterilisation and storage of
instruments in that it was not being done in compliance
with the guidelines of the dental board of Australia. The
dental board has interim immediate action, powers to
suspend and impose conditions on dental practitioners
and registration, if we believe it is appropriate to do so to
protect the health and safety of the public.”
Source: www.abc.net.au
In total, six dentists have had their registrations
suspended and another six have had conditions imposed
on them. This was because of a number of breaches
involving poor sterilisation and cleaning techniques
over a number of years.
The four practices involved include two called the Gentle
Dentist at Campsie and Sussex Street in the city and two
located at Surry Hills and Bondi Junction.
“Public health investigations began that included audits
of infection-control protocols and procedures within
these clinics,” said Dr Shane Fryer of the Dental Council
page 5
feature
Your liver
The liver is a very important organ. We cannot live
without our liver. It performs over 500 different chemical
functions and affects nearly every physiological process
of the body. It processes virtually everything you eat,
drink, breathe in or rub on your skin.
vitamins and minerals until needed. The liver converts
food into glucose, proteins and fats and helps spread
nutrients around the body. It also cleans the blood
by filtering alcohol and other toxic substances and
removing these from the body.
The liver is in the upper right-hand part of the abdomen,
underneath the diaphragm and below the ribs. It is to
the right of the stomach and above the gallbladder.
The liver regulates most chemical levels in the blood and
excretes a product called bile, which helps carry away
waste product from the liver and aids digestion.
Important proteins that affect the blood, such as albumin
and clotting factors, are made by the liver. It is one of the
main organs involved in our natural immunity because
it releases important chemicals that activate immune
responses when an infection is detected. The production
and maintenance of hormones are also controlled by the
liver.
It is the largest organ inside the human body and weighs
approximately 1.36 kg. It is reddish brown in colour and
is divided into two main lobes.
The gallbladder
sits under the liver,
along with parts of
the pancreas and
intestines. The liver
and these organs
work together to
digest, absorb and
process food.
The liver stores
energy by stockpiling sugar,
carbohydrates, fat,
page 6
The liver holds about 13 per cent of the body’s blood
supply at any given moment. There are two distinct
sources that supply blood to the liver:
1. Oxygenated blood flows into the liver through the
hepatic artery, which is pumped by the heart.
2. Nutrient-rich blood flows into the liver from the
intestines through the hepatic portal vein.
Below the liver, where the hepatic artery and the portal
vein come in, the bile duct comes out of the liver. Bile
made in the liver flows out through this bile duct (which
is a thin tube the size of a drinking straw) and goes down
to the gut where it mixes with food. The gall bladder is a
small greenish pear-shaped bag that hangs off the bile
news
Antioxidants and
liver disease
duct. It stores bile and squeezes it out into the gut at
mealtime.
Blood flows out of the top of the liver through three
large veins called the hepatic veins, into a big vein called
the inferior vena cava or IVC which goes to the heart.
The liver can repair and rebuild itself. Even if only 25
per cent of it is still healthy, the organ can regenerate
itself into a full liver again. However, if the liver becomes
severely damaged, there comes a point at which it is no
longer able to repair itself.
Looking after your liver
There are many things you can do to look after your liver.
•
Cut back on alcohol – Reducing
your alcohol intake is one of
the most important lifestyle
changes you can make. Regular
and heavy alcohol intake will
increase liver damage.
•
Avoid unhealthy foods –
Maintaining a healthy, wellbalanced diet and staying in
a healthy weight range will
prevent you from developing
fatty liver or speeding up the
progression of scarring. Giving
your body the right nutrients is
important for your well-being.
•
Cut back on cannabis - Heavy
cannabis use can scar your liver.
If you can stop cannabis use,
you will slow the progression of
liver damage.
•
Blood tests – Getting regular
blood tests will help monitor
your liver health
Antioxidants are chemicals which
minimise cellular damage. Antioxidants
can benefit all people, but particularly
those with liver or cell damage. The
body manufactures some antioxidants
while others come from food and
supplements. Many brightly coloured
fruit and vegetables, whole grains, nuts
and legumes contain antioxidants.
A great visible example of how
antioxidants work is by comparing
freshly sliced apple pieces. One piece of
apple is plain and the other has lemon
juice squeezed over it. The plain apple
slice will start to degrade and brown
quickly while the apple with lemon juice
will take much longer to change colour.
Lemon juice is rich in vitamin C, a potent
antioxidant, which delays the oxidation
or browning of the apple slice.
Oxidation is a natural process that ensures
the cells of our body are continuously
evolving. While oxidation’s cycle of cell
birth and cell death is nature’s way of
keeping healthy via renewal, this process
also creates potentially damaging free
radicals. Free radicals are kept under
control by antioxidants.
The liver benefits from antioxidants in
the same way a sliced apple with lemon
juice is protected. Eating a variety of
antioxidants can minimise liver cell
damage and slow disease progression.
Source: www.liversupport.com
page 7
feature
Hepatitis C symptom #6:
Flu-like symptoms
Treatment
People with hepatitis C can sometimes
experience flu-like symptoms. These
usually last a few days to a week,
however they can last longer. It can
leave you feeling run-down.
Flu-like symptoms are caused by a chemical called
interferon. Interferon is a natural chemical produced by
our immune systems. When we fight a cold or flu, we feel
the effects of our interferon in the form of symptoms,
such as fever, chills and aches.
Flu-like symptoms
•
Fever – This is when the human body temperature
goes above the normal range of 36–37 degrees
celsius. An elevated body temperature is one of
the ways our immune system attempts to fight
infections.
•
Chills – Feelings of cold accompanied by shivering.
Chills often accompany a fever.
•
Malaise – A general feeling of discomfort or being
unwell.
•
Body aches – This is when your body feels physical
pain. It is a sign your body is dealing with a condition
that affects the body as a whole.
•
Headaches – A continuous pain felt in the head.
•
Fatigue – A tired feeling, such as exhaustion or
feeling lethargic.
•
Weakness – When your body feels tired and you
may not be able to move.
•
Night sweats – Sweating a lot during the night when
your bedroom is not hot and without extra clothing
or bed covers.
All of the symptoms of the flu may not be present and
the severity of the symptoms can differ from one person
to another.
page 8
Flu-like symptoms are a common side-effect of the
current hepatitis C treatment of pegylated interferon
and ribavirin. Manufactured interferon, called pegylated
interferon, causes the same effects as our own internal
interferon. Usually, the symptoms lessen after two or
three weeks of taking the drug.
Managing flu-like symptoms
Coping with flu-like symptoms can be difficult and you
can feel like there’s not much you can do.
Your doctor may be able to prescribe some pain relief
medication or anti-inflammatory medication to help
with symptoms, such as fevers and aches. You may also
be able to purchase over-the-counter medication which
can help ease symptoms, however you must always
follow manufacturer’s directions and never exceed the
recommended dose. Some medications can impact your
liver.
Take a look at some of the tips on the next page to help
you cope. Remember, if you aren’t feeling 100 per cent,
take it easy and ask family and friends for help.
Mild physical activity
increases the blood flow
to joints and muscles
which may reduce
stiffness.
You may find the
application of
heat or cold packs
to the joints and
muscles helps in
relieving some of the
discomfort.
Put layers of
blankets and
clothes at
your bedside
to manage
chills.
Eat a diet full
of vitamins
and minerals
to give your
body the best
fuel.
Get plenty of rest and
listen to your body.
Some exercise can
boost energy levels.
Try gentle stretching
exercises.
Some herbal
products,
such as
herbal
tea, may
help some
people feel
better.
Take a warm bath or
shower.
A wash cloth on the forehead
or back of the neck may feel
good.
Drink
plenty of
water.
Tips for managing
flu-like symptoms
If you are on hepatitis C
treatment, inject pegylated
interferon before bed to try
and sleep through the worst
of the discomfort.
e
Avoid stress, as
it is associated
with changes in
the functioning
of the immune
cells.
If you continue to have problems with flu-like symptoms
speak to your health provider, who may be able to help.
page 9
feature
3
5
1
Hepatitis C genotypes –
4
what do they mean?
2 6
Over many hundreds of years, as hepatitis C has spread
around the world, it has evolved into different strains.
There are six main strains (genotypes) and several minor
strains within each genotype (subtypes). The oldest
genotype is genotype 1, then 2, 3, 4, 5 and 6. Subtype 1b
is the main strain in Northern Asia and Eastern Europe.
Genotype 2 is common in North Asia and genotype 3
in the Indian subcontinent. Genotype 4 has developed
in Egypt and accounts for almost 100 per cent of
infections in the Middle East. Genotype 5 has developed
in Southern Africa. Finally, genotype 6 has developed in
South East Asia – predominantly Myanmar, Cambodia
and Vietnam.
Hepatitis C subtypes 1a and 3a arose in Asia and spread
throughout the developed world largely as a result of the
heroine trade via injecting drug use. They are now the
most common genotypes in the UK, USA and Australasia.
With increases in global travel and immigration, all
genotypes are now found throughout the world. In
New Zealand, 55 per cent of infected individuals have
genotype 1 (most are subtype 1a), eight per cent have
genotype 2, 35 per cent have genotype 3 and 1 per cent
have genotype 4 and genotype 6.
The relevance of hepatitis C genotype is changing with
advances in treatment. There is no difference in severity
of liver disease between the different genotypes – the
risks of cirrhosis, liver cancer and transplant are similar
across all genotypes. The major difference between
page 10
different genotypes is the response to antiviral treatment.
With pegylated interferon plus ribavirin, rates of cure
were lowest in genotype 1 (45 per cent) and highest in
genotypes 2 and 3 (80 per cent). The first generation of
direct-acting antiviral treatment (the protease inhibitors
boceprevir and telaprevir), when added to pegylated
interferon and ribavirin, improve cure rates to almost 70
per cent. However, boceprevir and telaprevir only work
against genotype 1. Most of the other first generation
polymerase inhibitors, protease inhibitors and the NS5A
inhibitors also work best against hepatitis C genotype
1 (partly because they were developed to do so).
Hence, the first all-oral combinations (Gilead’s Harvoni
– ledipasvir/sofosbuvir, AbbVie’s Viekira Pak – paretavir/
ombatsvir plus dasubavir) have the best results in
patients infected with hepatitis C genotype 1 and worst
results in genotype 3.
The only direct-acting antivirals which work equally
well against all genotypes are the Nucleotide NS5B
inhibitors, of which the only approved one is sofosbuvir.
The good news is that the newest protease inhibitors
and the NS5A inhibitors also work equally well against
all genotypes. At least four different “pangenotypic”
combinations are now being trialled in patients (Gilead,
AbbVie, Merck and Janssen). In the next three to five
years, it is likely we will have combinations of two or
three “pan-genotypic” direct-acting antivirals. When this
happens, hepatitis C genotypes will have no relevance
and testing will disappear.
Call for action
Last year, more than 150 New Zealanders died from
complications of hepatitis C (HCV) cirrhosis and by 2030
that number will climb to 350. This increase reflects the
aging of the infected population (around 50,000 with an
average age of 50 years). The only way to prevent these
deaths is through successful antiviral treatment.
Last year, there were an estimated 1100 new HCV
infections in New Zealand, almost all in people who
inject drugs (PWID). This number has fallen significantly
since the 1990s thanks to the introduction of successful
harm-reduction strategies, such as needle exchange and
opioid substitution therapy (methadone, suboxone).
However, the only way to completely eliminate new
infections in NZ will be through treatment as prevention
(TasP) strategies where PWID are prioritised for antiviral
treatment.
The new oral antiviral therapies provide a unique
opportunity for New Zealand, both to prevent deaths
as well as to eliminate HCV infection. These new
treatments are highly effective (>95% success) and
extremely safe (no real side-effects and really suitable
for everyone). They are also simple – all oral, only 8 or
12 weeks of 1-3 tablets per day and require little or no
monitoring during treatment. They are ideally suited for
community prescribing by GPs, CADS physicians and in
prisons. By removing the need for individuals to attend
frequent hospital clinics, community prescribing will
also minimise the discrimination and stigmatisation and
should maximise treatment uptake.
But they are expensive and many governments are
recommending funding only for those patients with
the most advanced stages of liver disease, such as
those with liver failure on the waiting list for transplant
(<50 per year). But this will have little benefit because,
paradoxically, treating and rescuing people in liver
failure will actually increase the number who die from
liver cancer (as this increases the number living with
cirrhosis at risk of liver cancer).
Several independent cost-effective analyses (such as the
recent NICE from UK Department of Health) demonstrate
that the biggest benefits come from treating patients at
an earlier stage of their liver disease.
Last month, the Australian PBAC (their equivalent of
PHARMAC) recommended that (i) the new oral therapies
be funded for ALL Australians with HCV regardless of
disease severity and (ii) community prescribing should
be allowed i.e. no need to go to hospital specialists. This
forward-thinking decision opens the door to prescribing
from trained GPs (which is already possible for HBV and
HIV therapies). The Australian cabinet is expected to
approve this funding later this year. This will also allow
easier access for PWID, thereby allowing for the first
time, treatment as prevention. PBAC sees this as a way
to eliminate HCV from Australia within the next 25 years.
The major contra-argument voiced here is the high price
of the new therapies. But the price of these new therapies
is something negotiated between the funders and the
pharmaceutical companies. The increase in competition
(Gilead/AbbVie/Merck with others to follow soon) has
already resulted in big discounting around the world. It
is time for PHARMAC and the pharmaceutical companies
to start negotiating. Every year that treatment funding
is delayed will result in hundreds of preventable deaths
here in NZ.
If we need a lesson, we need to look at the history of HIV
treatment in New Zealand. The first death from AIDS was
reported here in NZ in 1983. Over the next 10 years the
numbers of deaths skyrocketed to more than 70 per year.
But the rapid roll-out of effective new oral antivirals had
a dramatic benefit, with reduction in deaths by >90%
within 10 years. Every New Zealander living with HIV can
now access the best oral antivirals available, and deaths
from AIDS are now rare. These HIV therapies have also
improved quality of life and productivity in people living
with HIV. What a wonderful success story and a tribute
to the advocates for the HIV-infected community, and
the commitment from their physicians, the Ministry of
Health and PHARMAC, who expedited these advances in
HIV therapy into clinical practice.
But HCV is a completely different story. Investment in
HCV support services, research and treatment remain
much lower than those provided for HIV, despite the fact
that HCV affects 10 times as many New Zealanders than
HIV. As for AIDS-related deaths, all deaths from HCV are
preventable through effective oral antiviral therapy. But
in 2015, no New Zealander living with HCV can access
funded oral HCV therapy.
The HCV community lacks effective advocacy in this
country and desperately needs a voice to convince
Government of the urgent need to fund these new
therapies. All of us must join together to provide that
voice.
Written by Professor Ed Gane,
New Zealand Liver Transplant
Unit, Auckland Hospital.
page 11
personal story
Simon’s story
I was diagnosed with hepatitis C just over three
years ago as part of a routine check at a sexual
health clinic. The result came as a complete shock.
I can still hear those words the doctor spoke as
he became the central character in one of those,
thankfully rare, life-changing moments: “there
seems to be a problem with one of your results.”
A few months’ experimentation with drugs in my early 20s
had probably exposed me to the virus. I had thought I’d
been fairly careful and as this was over 20 years ago, I had
thought I’d got away without any serious consequences
of that brief, but now apparently significant, episode in
my life. Even now, I’m still not convinced that this is the
way that I contracted the virus. There is no way of telling
how long it has been since initial infection though and I
have learnt not to dwell too much on the source of the
infection.
As for ‘what to do next’, there
was never any real doubt about
undergoing treatment.
As for ‘what to do next’, there was never any real
doubt about undergoing treatment. As soon as I was
diagnosed, the questions I asked were about treatment.
I was initially told I would have to wait about six months
for the chance to start treatment, which at the time
seemed an eternity. However, this turned out to be an
underestimation by the clinic staff and it eventually took
two years.
I found out a few weeks after diagnosis that I was
genotype 1a. A fairly devastating discovery as I was
fully aware that genotype is the primary indicator of
treatment success, and this wasn’t good. Additionally it
meant nearly a year’s worth of treatment.
Soon after, I got a viral load result. It was in the millions
and not a good result, this being the second strongest
indicator of treatment success. Add to this my gender
(wrong one), length of time of infection (too long) and
age (too old). Things weren’t looking too good.
However, I realised that all these factors were things that
I couldn’t change and that I should only concentrate
on things that I could change and aim to push those
statistics up again. The stats for someone in my position
I calculated at about 40 per cent. By careful preparation,
I thought I could push this to 50 per cent and, given
page 12
the success rate at the clinic where I was being treated,
maybe push this higher, possibly up to 60 per cent.
Things weren’t all that bad; there was some good news.
The liver function tests were nearly all in the normal
range, the exception being the Gamma-glutamyl
transferase (GGT, an enzyme that is produced in the
bile ducts) which was just above normal. An ultrasound
scan showed no abnormalities, so the chances of having
a cirrhotic liver were probably very low. I have always
had a fairly good diet and never been a heavy drinker
so I was confident that there was minimal liver damage,
which would increase the chances of treatment success.
The factors that I could do something about – in
increasing my chances of success – would be in the
preparation for the year ahead. My aim was to be in the
best mental and physical condition that I could achieve
and then to maintain that to keep the chances of success
as high as possible. In other words, I was determined
that, if my physiology would allow it, this treatment was
going to work. I decided to try and enjoy the year as
much as I could, to treat it as a year off, almost like a long
holiday.
My aim was to be in the best
mental and physical condition
that I could achieve and then to
maintain that to keep the chances
of success as high as possible.
Having a positive attitude to treatment is, I believe, vital
to getting through treatment and increasing my success
rate. One of the things that I liked about my treatment
clinic was that they shared this view.
I also had access to a psychologist throughout the
treatment to help with strategies to overcome negativity,
low moods and other problems.
There were other factors that helped in maintaining a
positive attitude. Firstly, I was lucky that I did not have
any major depression problems or other mental health
problems that a lot of people have to cope with on
treatment.
I had also told a couple of friends about what I was
going through and they were very supportive. Generally
I didn’t tell friends and family simply because they didn’t
need to know and their ignorance of what I was going
through helped me to maintain a sense of normality. I
also found that this stopped me focusing too deeply on
the treatment experience.
The clinic staff were very supportive – not only the
treatment nurses and consultants but the administration
staff and nurses were also very helpful. I used to actually
enjoy visiting the clinic; it was as if I had acquired an
extended family. This was particularly beneficial to me,
as I was in the clinic at least once a week, partly because
of my neutrophils count dropping to levels that were
causing concern.
To stay as fit as I could, I increased my involvement
with a local walking club. It was not only the exercise
that was important but the achievement of being able
to regularly walk eight to 12 miles every week, despite
being on treatment, gave me a psychological boost. The
walking group has a very active, social aspect to it which
I took an increasingly active part in. Meeting new people
and doing new things turned out to be a central theme
of my treatment experience.
Meeting new people and doing
new things turned out to be a
central theme of my treatment
experience.
Another source of exercise was involvement with railway
heritage. Before treatment began I was training to be a
fireman on a local heritage steam railway. Unfortunately,
this was one of the few things I had to give up. I did go
regularly to help with the cleaning and maintenance of
steam locomotives and still got out on the footplate on
various occasions. I was not strong enough to be able
to finish the training and qualify as a fireman; this is just
about the only regret I have about treatment.
For most of the treatment year I was regularly visiting
a sauna and steam room at my local sports centre. Part
of the reason was because it was very relaxing, but also
as I thought it might stimulate the lymphatic system to
expel the virus that can be found there. I have spoken to
other people who have found saunas too much when on
treatment, but I had no problem with them and found
them extremely beneficial.
I was not completely free from side-effects. I was very
tired at times but rarely had to spend time in bed resting.
I ensured that I had plenty of rest by learning to get this
where I could, for example relaxing on the train or sitting
in a coffee bar reading a book, or even a quick snooze
while waiting to see my treatment nurse.
I was lucky in not suffering any serious side-effects
following the interferon injections, although I did tend
to take them before going to bed, just in case. I did
become very breathless because of anaemia and this
was probably the worst part of the treatment. I had to be
careful when out walking that there weren’t any serious
hills to climb, as I could have problems ascending.
I did occasionally suffer from ‘riba rage’ but kept it under
control. Other side-effects were itchiness and rashes,
which were annoying but not serious. I also tended to
be easily confused and had problems concentrating.
Again, not serious but annoying. I did however, go back
to college to complete a certificate in counselling. This
was very therapeutic as I confided in the other students
on the course about what I was going through. It was
helpful to check in every week and have the chance to
discuss issues outside of the clinic.
The only serious side-effect problem was that my
neutrophils dropped to a level where I had to take an
additional drug to boost these. This meant another
injection each week, which seemed to make the
breathlessness slightly worse, but luckily nothing more
serious.
After 48 weeks, I was relieved that it was all over. I had
survived relatively unscathed, but there was a slight
feeling of sadness in that I would not be in regular
contact with the people at the clinic who cared for me.
I feel that the time on treatment has taught me things
about myself and overall it has actually been a positive
experience that will help me in the future.
I don’t yet know if this has worked. I will have a test in
a few weeks’ time to determine the outcome. I really
hope it’s good news and I can put this episode behind
me. However, if the news isn’t good then I have no major
anxieties about trying new treatment options in the
future, as I have shown that I should be able to tolerate
them and hopefully turn them into positive experiences.
But I hope it has worked and I can direct my energies to
other enterprises!
Reprinted from the Hep Review magazine with permission of Hepatitis NSW.
page 13
feature
Liver series #2 - Cirrhosis
This is the second article in a series on liver failure.
This edition deals with cirrhosis and describes the
causes and investigations. The next article will focus
on complications of cirrhosis.
Cirrhosis is a progressive, diffuse, fibrosing and nodular
condition that disrupts the normal architecture of the
liver. Fibrosis was previously thought to be an irreversible
scarring process formed in response to inflammation or
direct toxic damage to the liver, but current evidence
suggests fibrosis may be reversible.
Any chronic damage to the liver can cause progression
to cirrhosis. Although your liver can be injured in many
ways, the final common pathway is inadequate healing
resulting in hepatic parenchymal fibrosis. Approximately
80 to 90 per cent of the liver parenchyma must be
destroyed before liver failure is manifested clinically.
Causes of hepatic cirrhosis
These causes often co-exist and result in accelerated
disease.
Most common causes
Less common causes
Alcohol (60 to 70%)
Genetic metabolic disease
Chronic hepatitis B or C (10%)
Drugs and toxins
NAFLD (10%) - most commonly
resulting from obesity and
metabolic syndrome
Autoimmune chronic
hepatitis types 1, 2 and 3
Hemochromatosis (5 to 10%)
Biliary obstruction (5 to 10%)
Primary or secondary biliary
cirrhosis
Idiopathic/miscellaneous
Infection
Vascular abnormalities
Veno-occlusive disease
Cirrhosis is often a silent disease, with most patients
remaining asymptomatic until decompensation occurs.
The condition is often discovered during a routine
examination with laboratory or radiographic studies, or
at autopsy. Early and well-compensated cirrhosis can be
visible as anorexia and weight loss, weakness, fatigue and
even osteoporosis as a result of vitamin D malabsorption
and subsequent calcium deficiency. Decompensated
disease (chronic liver failure) can result in complications,
such as ascites, spontaneous bacterial peritonitis,
hepatic encephalopathy and variceal bleeding from
portal hypertension (discussed further in next issue).
Clinical symptoms at presentation may include jaundice
of the eyes or skin, pruritus, gastrointestinal bleeding,
coagulopathy, increasing abdominal girth and mental
status changes. Each of these clinical findings is the
result of impaired hepatocellular function with or
page 14
without physical obstruction secondary to cirrhosis.
Because hepatic enzyme synthesis is required for drug
metabolism, heightened sensitivity and medication
toxicity may occur in patients with impaired hepatic
enzyme synthesis.
According to estimates from the United Network for
Organ Sharing (UNOS), 75 to 80 per cent of cirrhosis
cases can be prevented by eliminating alcohol abuse.
Mortality rates in patients with alcoholic liver disease are
considerably higher than in patients with other forms of
cirrhosis.
Normal liver
Liver with cirrhosis
Image source: depts.washington.edu/
Laboratory tests
No serologic test can diagnose cirrhosis accurately. The
term ‘liver function test’ is inaccurate because the test to
determine the components in most standard liver tests
do not reflect the function of the liver correctly. Although
liver function tests may not correlate exactly with hepatic
function, interpreting abnormal biochemical patterns
together with the clinical picture may suggest certain
liver diseases. When a liver abnormality is suspected
or identified, other tests, such as a complete blood
count with platelets and an INR, should be performed.
Common tests in standard liver panels include the
serum enzymes aspartate transaminase (AST), alanine
transaminase (ALT), alkaline phosphatase, γ-glutamyl
transferase (GGT), bilirubin and serum albumin.
Radiological tests
Although various radiographic studies may suggest the
presence of cirrhosis, no test is considered a diagnostic
standard. The major use of radiographic studies is to
detect ascites, hepatosplenomegaly, hepatic or portal
vein thrombosis and hepatocellular carcinoma, all of
which strongly suggest cirrhosis.
Ultrasound
In people suspected to have cirrhosis, abdominal
ultrasonography with/without doppler is a non-invasive
and widely available modality that provides valuable
and chronic liver failure
Written by Dr Frank Weilert,
Hepatologist at Waikato Hospital.
information regarding the gross appearance of the
liver and blood flow in the portal and hepatic veins.
Ultrasonography should be the first radiographic study
performed in the evaluation of cirrhosis because it is the
least expensive and does not pose a radiation exposure
risk. Nodularity, irregularity, increased echogenicity and
atrophy are ultrasonographic hallmarks of cirrhosis. In
advanced disease, the gross liver appears small and
multinodular, ascites may be detected and doppler flow
can be significantly decreased in the portal circulation.
The discovery of hepatic nodules via ultrasonography
warrants further evaluation because benign nodules
(which have no harmful effect) and malignant
nodules (which can be very harmful) can have similar
ultrasonographic appearances.
CT and magnetic resonance imaging (MRI)
These are generally poor at detecting morphologic
changes associated with early cirrhosis but they can
accurately demonstrate nodularity and lobar atrophic
and hypertrophic changes, as well as ascites and
varices in advanced disease. They are used as followup investigation as a result of an abnormal screening
ultrasound or when ultrasound has not given reliable
information.
Non-invasive evaluation (FibroScan and Non-invasive
serum markers)
These have been increasingly employed when the
cause of chronic liver disease is clearly identifiable and
staging of the severity of the liver injury is necessary.
Depending on community or secondary care protocols,
this usually includes the combination of AFP and
ultrasound monitoring as well as regular clinical review
and assessment of liver synthetic function.
Liver biopsy
Referral for liver biopsy should be considered after a
thorough, non-invasive serologic and radiographic
evaluation has failed to confirm a diagnosis of cirrhosis.
The benefit of biopsy outweighs the risk and it is
suggested that biopsy will have a favourable impact on
the treatment of chronic liver disease. The sensitivity and
specificity for an accurate diagnosis of cirrhosis and its
etiology range from 80 to 100 per cent.
Prognosis and outcome
Prognosis and survival are markedly better in patients
with compensated (stable) cirrhosis than in those with
decompensated cirrhosis (chronic liver failure). Two main
scoring systems are used to allow repeat assessment at
clinic visits.
Child-Turcotte-Pugh Score (CTP):
The CTP or CP score is still widely used in the clinic and
hospital setting as a simple prognostic tool. CTP scores
can estimate the risk of death at three months and one to
two-year survival. The CTP has been shown to accurately
predict outcomes in patients with cirrhosis and portal
hypertension. Because it is simple and does not require
complicated calculation, clinicians have widely used this
tool to assess the risk of mortality in cirrhotic patients.
Calculation: The CTP scoring system incorporates five
things, including serum bilirubin, serum albumin,
prothrombin time, ascites and grade of encephalopathy.
Based on the sum of the points from these five
parameters, the patient is categorised into one of three
CTP classes, either A, B, or C.
Image source: depts.washington.edu/
Model for End-stage Liver Disease (MELD):
The MELD score estimates the survival probability of a
person with end-stage liver disease. It is usually used in
the context when your doctor is considering referral to
a liver transplant centre. The higher the MELD score, the
lower the three-month survival.
Calculation: The MELD score is based on three commonly
obtained laboratory parameters, including serum
bilirubin, serum creatinine and international normalized
ratio (INR).
Conclusion
This series shows the importance of having liver disease
properly assessed and staged so that appropriate
prevention, treatment and surveillance can be organised.
Prognosis of cirrhosis is still very good, as long as further
damage is prevented, reversible causes are treated (or
cured) and complications are actively looked for so that
they can be diagnosed early.
page 15
feature
Differences between
men and women
with hepatitis C
The hepatitis C virus doesn’t discriminate against
gender - anyone can become infected. However, the
virus does have a slightly different impact on women
compared to men. There are also more men infected
with hepatitis C. Approximately 60 per cent of the
estimated 50,000 New Zealanders living with hepatitis
C are male. Men and women can have different
experiences in many aspects of their health. Some of
the ways hepatitis C affects men and women differently
are described below.
susceptible to cirrhosis. However, this also means the
protective effect decreases after menopause as the
estrogen hormone decreases. Liver damage may occur
faster in women after menopause.
Another factor which influences liver damage is alcohol
consumption. Men typically consume more alcohol than
women. Alcohol is harmful to the liver and will speed up
liver damage.
Treatment
Infection
Research has shown women are more likely to
spontaneously clear the virus. When a person comes
into contact with hepatitis C there is a 15 to 25 per cent
chance their body will clear it naturally in the first six
months (acute stage). The 75 to 85 per cent of people
who don’t clear the virus will develop life-long chronic
hepatitis C. The percentage who clear the virus in the
acute phase is higher in women. Although it is unknown
why it is higher in women, it is thought that hormones
may be partly responsible.
Some research has shown males are more likely than
females to engage in at-risk behaviours, such as injecting
drugs. While this is debatable, it means men are more
likely to be exposed to the virus.
Alternatively, some women can be more at risk of hepatitis
C exposure because of their job. Some predominantly
female occupations may be more at risk of blood-toblood contact, such as nursing, housecleaning and
working in the cosmetic industry.
Liver damage
Research has found men seem to be less protected
against liver cirrhosis than women. This means liver
damage occurs faster and more frequently in males. Men
who have cirrhosis are five times more likely to develop
liver cancer than women who have cirrhosis.
Some experts believe the female hormone estrogen
protects women from liver damage, making them less
page 16
Women have been found to respond better than men
to combination treatment of pegylated interferon and
ribavirin. This means women are more likely to clear
the virus after treatment. However, women who have
gone through menopause are also less responsive than
younger women to pegylated interferon and ribavirin.
When on treatment for hepatitis C, women are more likely
than men to develop anaemia. Anaemia is a condition
when there is a deficiency of red cells or of haemoglobin
in the blood. It is a common side-effect of ribavirin.
Pregnancy
Women with hepatitis C also have the added concern
of passing the virus onto their children. However, there
is a very low risk of transmitting hepatitis C to your
baby while pregnant or during birth (less than 5 per
cent chance). Hepatitis C transmission is more likely to
happen when a mother has a high hepatitis C viral load,
so it is important the doctor or midwife is aware you have
hepatitis C in order to monitor your health and minimise
the risk of infecting the baby. If the baby is born with
hepatitis C, there is a 45 per cent chance they will clear
the virus naturally within the first 12 months.
Breastfeeding is safe for women with hepatitis C.
Although very low levels of the virus have been detected
in breast milk, it is destroyed in the stomach and there is
no indication that breastfeeding passes on the virus. You
may need to temporarily stop breastfeeding if you have
cracked or bleeding nipples.
foundation news
CEO departure
By now many of you will have heard that John Hornell
recently decided to leave the Foundation.
Over his 17 years with the Foundation, John served in a
number of roles including CEO from 2002 to 2015.
Under John’s leadership the Hepatitis Foundation
has made a number of achievements, including the
establishment and operation of the largest national
Hepatitis B surveillance programme in the world.
He initiated the development of the first Hepatitis C
community pilot projects which have been instrumental
in developing the National Hepatitis C Plan.
Details of these two Ministry of Health-funded
programmes can be found on our website: http://www.
hepatitisfoundation.org.nz.
Dr Kelly Barclay will continue as Acting-CEO until the
process to appoint a new CEO is completed.
World Hepatitis Day
campaign launched
On World Hepatitis Day, July 28, The Hepatitis
Foundation of New Zealand started a new
advertising campaign for hepatitis B and C across
selected areas in New Zealand.
The advertising began with radio ads and then
spread into press adverts, mall shopalites, washroom posters and online advertising.
The aim of the campaign was to raise awareness
of hepatitis B or C within communities, and to
encourage those at risk to get tested.
The Foundation targeted those people who
are most at risk of viral hepatitis with a new
campaign. Approximately 150,000 people live
with chronic hepatitis B or C in New Zealand.
Nearly two-thirds of these people don’t realise
they have chronic hepatitis.
You may have moved on but
did hepatitis move with you?
Everyone has a past, some more exploratory
than others. That past life may well be a memory now,
but it’s possible you are still carrying a reminder,
Hepatitis C. If you have ever shared a needle, had
an unsterile piercing or tattoo, then you could have
Hepatitis C. Getting tested for Hepatitis is easy.
It’s better to know. Get tested.
For a FREE test call The Hepatitis
Foundation confidentially on
0800 33 20 10
or TXT your name & HEPC to 8855
or talk to your doctor
INSIGTH6850
John Hornell, former Foundation
CEO
page 17
research
Differences found in cancer caused by hepatitis B and C
New research has found liver cancer patients with
hepatitis B appear to have worse disease status than
those with hepatitis C, including larger tumours and
more extensive liver involvement. However, the likely
course of the medical condition was similar for the two
groups. The new research was presented at the American
Society of Clinical Oncology (ASCO) annual meeting
during June in Chicago.
The study had 815 participants with hepatocellular
carcinoma, referred for treatment between 1992 and
2011. Hepatocellular carcinoma (HCC) is cancer that
starts in the liver. It is a major cause of cancer death
worldwide. A total of 343 hepatitis B patients and 472
hepatitis C patients were included in the study at a large
U.S. cancer center. Marc Isamu Uemura and colleagues
from the University of Texas evaluated pathological and
clinical characteristics of the 815 patients. Three-quarters
were men and the majority were Texas residents.
portal thrombosis, a larger tumour size, extensive liver
involvement, advanced CLIP stage and higher levels of
alpha-fetoprotein (AFP), which is a diagnostic biomarker
for liver cancer.
However, results also showed people with hepatitis C
were more likely to have cirrhosis, which is advanced
scarring of the liver.
The researchers concluded there are significant variations
between hepatitis B and hepatitis C which may impact a
patient’s eligibility for treatment, but not prognosis.
Source: www.hivandhepatitis.com
Results showed patients with hepatitis B developed
hepatocellular carcinoma at a younger age than those
with hepatitis C. On average, those with hepatitis B
developed cancer at 57.4 years of age and those with
hepatitis C at 61.3 years of age.
Hepatitis B patients were also more likely than hepatitis
C patients to have poorly differentiated tumours,
Low risk of reinfection for injection drug users
According to studies from Norway and Canada,
reinfection rates after clearing the hepatitis C virus
among people who inject drugs, as well as past drug
users, are relatively low.
The Norwegian study examined 138 people cured in a
trial in 2004. Before being treated, 94 people had been
injecting drug users. After seven years of follow-up, 37
per cent had started injecting drugs again. Thirteen per
cent of all people who had resumed injecting drug use
had become reinfected with hepatitis C, a total of 12
infections.
The Canadian study, which took place in Montreal,
looked at 338 people cured of hepatitis C at a clinic up to
the end of 2013. Participants in the study were retested
once a year after being cured. Of the 338 cured patients,
82 per cent had been exposed to hepatitis C through
injecting drug use. A total of 22 participants, or six per
cent of the group, became reinfected with hepatitis C
after being cured. Other factors which were found to
influence reinfection in the Canadian study were the lack
page 18
of stable housing and hepatitis C and HIV coinfection.
The findings from the studies suggested current and
former injecting drug users who have been cured of
hepatitis C require ongoing support to remain free of
hepatitis C. Findings also indicated that fears of a high
reinfection rate should not be used as a reason to withhold
hepatitis C treatment from people who inject drugs.
Source: www.aidsmap.com
comings and goings
? ?
We would love to hear about your journey
with hepatitis C. Telling your story helps
others who are going through a similar
experience.
If you would like to share your hepatitis
C story, please email talkinghepc@
hepatitisfoundation.org.nz or call
0800 33 20 10.
?Did you know
? ?
? ?? ?
?
?
?
?
?
Chronic hepatitis is often
called the “silent killer”
because the liver is a
non-complaining organ.
Liver cells don’t have
nerves, so there can be
serious tissue damage
but no pain.
?? ???
?
??
Welcome to...
Farewell to...
Mandy Jackson
–
Mandy is our new
Midlands
Customer
Relationship Manager.
She will be visiting
general practices to
organise clinics and
educate stakeholders.
Liz Stevens – Liz was
one of our Wellington
Hepatitis Community
Nurses. She did a great
job in the Wellington
region and will be
missed by the team.
Dale Hikuroa – Dale is
our new Administrator
in the Whakatane
office. She will help
with calls on the
hepatitis helpline as
well as administration
duties,
such
as
enrolling patients.
Jenny Patchell – Jenny
was our Midlands
Customer Relationship
Manager. She played
an important role in
the Midlands region
and leaves big shoes
to fill.
We wish you all the best in the future.
Welcome to the team!
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
0800 33 20 10, www.hfnz.nz
Alcohol and Drug Helpline
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, [email protected]
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