Winter 2014: Edition 09 The Hepatitis Foundation celebrates its 30th

talkinghep
The Hepatitis Foundation celebrates
its 30th anniversary with the
Governor-General at Government
House.
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on how to cope with it.
Latest update on the newest drugs.
Winter 2014: Edition 09
On Friday 20 June, we were privileged to mark the 30th anniversary of The Hepatitis
Foundation of New Zealand with Their Excellencies at their residence, Government House.
His Excellency Lt Gen The Rt Hon Sir Jerry Mateparae, GNZM, QSO, Governor-General of New
Zealand addressed the crowd and spoke of how far the Foundation has come in the last 30
years. It is with great pleasure that I share His Excellency’s speech with you.
John Hornell
Chief Executive Officer of The Hepatitis Foundation of New Zealand
Rau Rangatira mā, e kui mā, e koro mā,
e huihui nei, tēnei aku mihi māhana
ki a koutou. Nau mai, haere mai rā ki
te Whare Kawana o Te Whanganui a
Tara. Kia ora tātou katoa. Distinguished
guests, ladies and gentlemen, warm
greetings to you all, and welcome to
Government House.
I specifically acknowledge: Professor
Chris Cunningham, John Hornell, and
Sandy Milne; Chair of the Board, Chief
Executive and Founder respectively of The Hepatitis Foundation of
New Zealand.
It is a great pleasure for Janine and me to welcome you to
Government House for this reception to recognise and celebrate
the important work of The Hepatitis Foundation of New Zealand.
This year The Hepatitis Foundation of New Zealand celebrates an
important milestone – its 30th anniversary.
In 2012, I was pleased to become Patron of the Hepatitis Foundation
because I appreciate the vital service it provides to New Zealanders
living with hepatitis. Since then I have learnt much more about the
prevalence of the virus both at home and abroad. The facts are
sobering.
I think New Zealanders would be stunned to know that worldwide,
hepatitis still has a considerable presence, with one in 12 people
affected, and that there are 500 million people living with chronic
hepatitis B or C worldwide, and that we lose 1.4 million people each
year as a result of viral hepatitis.
I think they would be alarmed that closer to home, many of the
150,000 New Zealanders living with chronic hepatitis B and C don’t
even realise that they have it. The virus is the leading cause of liver
cancer and liver transplantation in New Zealand.
Tonight, we celebrate that in New Zealand we are fortunate to have
people like Sandy Milne, one of the pioneering researchers into
hepatitis B, and who is with us tonight. Sandy started this work with
Dr Chris Moyes in the 1970s and 1980s.
Their work and the mahi of others in our communities has been
of huge benefit to New Zealanders. For example, when the newly
formed Hepatitis Foundation tested 93 per cent of Kawerau’s
population for hepatitis B in 1984, it became clear that the virus was
highly endemic. Young children were cited as the main source of
infection.
In 1985, the Kawerau community funded a world-first lowdose hepatitis B vaccination programme. Ninety-five per cent of
susceptible Kawerau children up to the age of 12 were vaccinated.
The success of the programme led to the decision to vaccinate all
children across New Zealand.
In the same year, the Government began vaccinating new-borns of
carrier mothers, and in 1990 New Zealand was the first sovereign
nation to introduce universal hepatitis B vaccinations for all
children.
The Foundation is to be applauded for its role in bringing about
these changes – and for its subsequent work offshore in the Pacific
and Vietnam.
From 1999 to 2002 the Foundation was again blazing a trail in the
prevention and control of viral hepatitis infection. This entailed the
largest hepatitis B screening programme ever conducted. More
than 90,000 New Zealanders were screened, and approximately
10,000 people with chronic hepatitis B were identified.
The start of the 21st century saw the establishment of the free
national long-term follow-up programme at the Foundation, which
continues today. It is successfully monitoring more than 16,000
people with chronic hepatitis B and more than 1,500 people with
chronic hepatitis C.
Tonight, we are celebrating the Hepatitis Foundation’s achievements
over the past 30 years. It has delivered, and is delivering, on its
mission to improve health outcomes for people living with chronic
hepatitis B and C in New Zealand.
However, it is not resting on its laurels as there is still much to be
done. The Foundation’s goal is to increase the enrolment rate to
more than 25,000 people with hepatitis B and 10,000 people with
hepatitis C, working in partnership with health providers.
I’m proud to be Patron of the Foundation because it epitomises core
New Zealand values: a commitment to public good and care and
support of the vulnerable.
I hope World Hepatitis Day on Monday 28 July will prompt New
Zealanders to think about how they can support the Foundation in
its long-term goal of eradicating chronic hepatitis in our country.
We can all make a difference, individually and collectively. As
Archbishop Desmond Tutu said, “Too frequently we think we have
to do spectacular things, and yet if we remembered that the sea is
actually made up of drops of water, and each drop counts—each
one of us can do our little bit where we are”.
So let’s together, with the leadership of The Hepatitis Foundation of
New Zealand and health community, work to make sure that our
family members, our friends, and those in our communities ‘Know
it, test it, and treat it’.
Kia ora huihui tātou katoa.
Speech delivered by His Excellency Lt Gen The Rt Hon Sir Jerry Mateparae, GNZM, QSO,
Governor-General of New Zealand at the 30th anniversary of The Hepatitis Foundation
of New Zealand on Friday 20 June 2014.
Publisher:
The Hepatitis Foundation
of New Zealand
contents
Editor/Design/Production:
Kate Sutcliffe (nee Perkins)
Editorial Contributors:
Professor Ed Gane
Website:
www.hepatitisfoundation.org.nz
Mailing Address:
PO Box 15 347
Tauranga
New Zealand
Phone:
+64 7 579 0923
Hepatitis Helpline:
0800 33 20 10
Contact Talking Hep C:
[email protected]
News..................................................................................................4
Feature: Highlights of EASL meeting........................................8
News...................................................................................................10
Personal story.................................................................................12
Feature: Coping with fatigue......................................................14
The Hepatitis Foundation of
New Zealand is a charitable trust
governed by a board of trustees.
Research...........................................................................................16
The Foundation is currently working
in partnership with the Ministry
of Health to improve hepatitis C
services in New Zealand.
Personal story..................................................................................17
Talking Hep C is a quarterly publication,
released in summer, autumn, winter and
spring. For more information about publication
dates, contributions or advertising, email
[email protected].
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.
Project update................................................................................18
Letters to the editor......................................................................19
Contacts and support................................................................. 20
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.
page 3
news
The Foundation celebrates its 30th anniversary with
Lt Gen The Rt Hon Sir Jerry Mateparae, GNZM, QSO,
Governor-General of New Zealand, spoke of the
Hepatitis Foundation’s achievements and its exciting
future ahead, as he celebrated the 30th anniversary
of The Hepatitis Foundation of New Zealand at his
residency, Government House, on Friday 20 June 2014.
One hundred and sixty people attended the event
at Government House, hosted by Their Excellencies.
Attendees included people living with chronic
hepatitis B or C, Mayor Celia Wade-Brown of Wellington,
Mayor Tony Bonne of Whakatane, medical specialists,
general practitioners, health providers and Hepatitis
Foundation staff.
Across New Zealand, approximately 150,000 people live
with chronic hepatitis B or C and many don’t realise they
have it. The Foundation encourages anyone at risk of
hepatitis to contact the Hepatitis Foundation for a free
test on 0800 33 20 10 or via www.hepatitisfoundation.
org.nz.
A brief history of The Hepatitis Foundation of New
Zealand:
• Pioneering work on hepatitis B in New Zealand
began with Sandy Milne (MBE) in 1976.
• Through the 1970s to early 1980s, Sandy Milne
and Dr Chris Moyes conducted a series of studies
on hepatitis B.
• In 1984, the newly established Hepatitis Foundation,
implemented the Kawerau Seroprevalence Study.
page 4
•
•
•
•
•
They tested 93 per cent of Kawerau’s population for
hepatitis B. The results showed that the hepatitis
B virus was highly endemic. Young children who
had hepatitis B appeared to be the main source of
infection.
In 1985 a world-first low dose hepatitis B
vaccination programme of Kawerau children was
funded by the community. Over 95 per cent of
susceptible Kawerau children up to the age of 12
were vaccinated.
The success of this programme led to the decision
to vaccinate all children across New Zealand. In
1990, as a result of the Foundation’s work, New
Zealand was the first sovereign nation to introduce
universal hepatitis B vaccination for all children.
In the 1990s, the Foundation continued providing
screening and vaccination in New Zealand as well
as in high-risk communities overseas.
From 1999 to 2002 the Foundation commenced
the largest hepatitis B screening programme ever
conducted. Over 90,000 New Zealanders were
screened with over 10,000 people with chronic
hepatitis B identified.
The start of the 21st century saw the establishment
of the free national long-term follow-up
programme at the Hepatitis Foundation. The
programme continues today, successfully
following up and monitoring over 16,000 people
with chronic hepatitis B and over 1,500 people
with chronic hepatitis C.
the Governor-General at Government House
page 5
news
25th anniversary of the discovery of hepatitis C
Since the mid-1970s, hepatitis C was classified as non-A, non-B hepatitis
(NANBH). Over the next decade, international scientists failed to identify what
NANBH actually was. In 1987, researchers found a way to use molecular cloning
to identify the unknown virus and were able to develop a diagnostic test. A year
later, the presence of the virus was verified in NANBH samples. Finally, in April
1989, the ground-breaking discovery was published in the renowned Science
journal.
In the 25 years since the initial discovery, researchers haven’t stopped
investigating hepatitis C. As a result, a lot has changed in the field. We’ve seen
huge leaps in medical advancements for hepatitis C, particularly in the last few
years. We are now at a point where experts believe all patients can be cured and
are in the initial stages of predicting when hepatitis C will be eradicated.
Below are the (very scientific!) abstracts from the 1989 articles.
Sources: The Lancet, www.wikipedia.org.
Science 21 April 1989: Vol. 244 no. 4902 pp. 359-362 DOI: 10.1126/
science.2523562
Isolation of a cDNA clone derived
from a blood-borne non-A, non-B viral
hepatitis genome
QL Choo, G Kuo, AJ Weiner, LR Overby, DW Bradley, M
Houghton
Science 21 April 1989: Vol. 244 no. 4902 pp. 362-364 DOI: 10.1126/science.2496467
An assay for circulating antibodies to a major
etiologic virus of human non-A, non-B hepatitis
G Kuo, QL Choo, HJ Alter, GL Gitnick, AG Redeker, RH Purcell, T Miyamura, JL
Dienstag, MJ Alter, CE Stevens, al. et.
A specific assay has been developed for a blood-borne
non-A, non-B hepatitis (NANBH) virus in which a polypeptide
synthesized in recombinant yeast clones of the hepatitis C
virus (HCV) is used to capture circulating viral antibodies.
HCV antibodies were detected in six of seven human sera that
were shown previously to transmit NANBH to chimpanzees.
Assays of ten blood transfusions in the United States that
resulted in chronic NANBH revealed that there was at least
one positive blood donor in nine of these cases and that all
ten recipients seroconverted during their illnesses. About
80 per cent of chronic, post-transfusion NANBH (PT-NANBH)
patients from Italy and Japan had circulating HCV antibody;
a much lower frequency (15 per cent) was observed in acute,
resolving infections. In addition, 58 per cent of NANBH
patients from the United States with no identifiable source
of parenteral exposure to the virus were also positive for
HCV antibody. These data indicate that HCV is a major cause
of NANBH throughout the world.
page 6
A random-primed complementary DNA library
was constructed from plasma containing the
uncharacterized non-A, non-B hepatitis
(NANBH) agent and screened with serum
from a patient diagnosed with NANBH. A
complementary DNA clone was isolated that
was shown to encode an antigen associated
specifically with NANBH infections. This
clone is not derived from host DNA but
from an RNA molecule present in NANBH
infections that consists of at least 10,000
nucleotides and that is positive-stranded
with respect to the encoded NANBH antigen.
These data indicate that this clone is
derived from the genome of the NANBH agent
and are consistent with the agent being
similar to the togaviridae or flaviviridae.
This molecular approach should be of great
value in the isolation and characterization
of other unidentified infectious agents.
From www.sciencemag.org. Reprinted with permission from AAAS.
This year marks the 25th anniversary of the formal identification of the hepatitis
C virus. This discovery was published in two articles in the journal Science on 21
April 1989.
news
Controversy continues with
the price of new drugs
WHO releases its first
guidelines for hepatitis C
The World Health Organisation (WHO) has released
its first guidance on the care for people living with
hepatitis C.
The release of the document, WHO guidelines for
screening, care and treatment of persons with hepatitis
C infection, coincides with the availability of more
effective drugs.
Dr Stefan Wiktor, leader of WHO’s Global Hepatitis
Programme, said, “The WHO recommendations are
based on a thorough review of the best and latest
scientific evidence. The new guidance aims to help
countries improve treatment and care for hepatitis and
thereby reduce deaths from liver cancer and cirrhosis.”
“Experience has shown that a multi-pronged strategy
is required to improve access to treatment, including
creating demand for treatment. The development of
WHO guidelines is a key step in this process,” said Dr
Peter Beyer, Senior Advisor for the Essential Medicines
and Health Products Department at WHO.
WHO will be working with countries to introduce
the guidelines as part of their national treatment
programmes. The new guidelines make nine key
recommendations:
1. Test those who are part of a population with high
prevalence of hepatitis C or those who have been
at risk of exposure.
2. Establish chronic infection (HCV PCR/RNA) directly
following a positive antibody test.
3. Assess alcohol intake and offer help to people
with moderate to high alcohol intake.
4. In resource-limited settings, use APRI or FIB4 for
the assessment of hepatic fibrosis.
5. Everyone with chronic hepatitis C should be
assessed for antiviral treatment.
6. Pegylated interferon is recommended above
standard interferon.
7. Boceprevir or telaprevir with pegylated interferon
and ribavirin is suggested for people with
genotype 1, rather than pegylated interferon and
ribavirin alone.
8. Sofosbuvir is recommended for people with
genotypes 1, 2, 3 and 4, rather than pegylated
interferon and ribavirin alone.
9. Simeprevir is recommended for people with
genotype 1a (without Q80K) and 1b, rather than
pegylated interferon and ribavirin alone.
Controversy continues with the new hepatitis C drug, Sovaldi,
which costs at least US$1,000-a-day in North America. Since
Sovaldi earned approval from the US FDA (Food and Drug
Administration) in December, there has been outcry at the
cost, which has, in some ways, overshadowed the above 90 per
cent cure rate. Many payers have begun to push back against
Gilead’s price, saying they will stop using the drug once rival
hepatitis C drugs are available.
About 30,000 people have received Sovaldi so far. Sales are
expected to reach as high as US$10 billion within the first year
for Gilead Sciences, the makers of the drug.
However, the company has offered to supply Sovaldi to Egypt
with a 99 per cent discount. Gilead will charge Egyptians
US$900 for a 12-week course of treatment. Egypt has the
highest prevalence of hepatitis C in the world. Over 11 million
Egyptians live with chronic hepatitis C, which equates to over
14 per cent of the population.
In Illinois, the Department of Corrections has approved the
use of Sovaldi for all inmates with hepatitis C, which could be
as many as 3,750 prisoners. If only one third of these people
receive the drug, it will cost US$61 million, compared to US$8
million for the cost of interferon and ribavirin.
In the UK, the NHS (National Health Service) will pay for those
who have the greatest need for Sovaldi. Approximately 500
people with end-stage liver disease will receive Sovaldi free
of charge. The patients will receive Sovaldi in combination
with daclatasvir, another type of antiviral drug made by BMS
which is not yet approved. This has been authorised by the
NHS without waiting for approval from the advisory body,
NICE (National Institute for Health and Care Excellence), due
to urgency.
In New Zealand, Sovaldi was approved by Medsafe, the New
Zealand Regulatory Authority, in March this year. People with
hepatitis C are now able to access Sovaldi, but few are likely
to, because of the high cost, until it is funded by PHARMAC
(the agency which decides on behalf of District Health Boards
which drugs should be subsidised).
Other companies planning to release rival drugs to the
market are already talking about offering competitive pricing.
This could lower prices and make these new breakthroughs
affordable for those who need them.
Sources: www.cbsnews.com, The Guardian UK, www.newsweek.com
Source: www.who.int.
page 7
feature
Highlights of the EASL* meetin
*European Association for the Study of the Liver
Written by Professor Ed Gane, Liver Unit,
Auckland Hospital
EASL 2013 will be remembered as the year that genotype
1 became easier to treat by adding two new direct-acting
antivirals (DAAs) to the current regime of pegylated interferon
plus ribavirin. This is known as triple therapy. Adding either
sofosbuvir (Sovaldi™, Gilead Sciences, a polymerase inhibitor)
or simeprevir (OLYSIO™, Janssen, a protease inhibitor) both
increased the success rate and tolerability of treatment (by
decreasing duration of treatment to only 12 or 24 weeks).
EASL 2014 marked the end of all interferon-based
treatment for hepatitis C, thanks to several ground-breaking
presentations from the Phase III studies of Gilead and AbbVie
DAA combinations and the Phase II studies of the Merck and
BMS combinations.
(a) Gilead Regimen
Gilead has combined sofosbuvir with ledipasvir (a NS5A
inhibitor) in a fixed dose combination tablet of one per day.
In three large phase III studies (named ION-1, 2 and 3), almost
2,000 patients with chronic hepatitis C genotype 1 received
this fixed dose combination tablet.
1. ION-1 evaluated whether 24 weeks of the fixed dose
combination was better than 12 weeks and whether
ribavirin was still needed in patients who had never been
treated before. Ninety-nine per cent of patients treated
with the fixed dose combination without ribavirin for
only 12 weeks were cured.
2. ION-3 evaluated whether only eight weeks of the fixed
dose combination was as good as 12 weeks and whether
ribavirin was still needed in patients who had never been
treated before. Ninety-four per cent of patients treated
with the fixed dose combination without ribavirin for
only eight weeks were cured.
3. ION-2 evaluated whether prolonging the duration of this
treatment from 12 to 24 weeks was beneficial in patients
who had previously failed to respond to triple therapy (i.e.
treatment with pegylated interferon and ribavirin plus
boceprevir or telaprevir). Overall, the cure rate was 94 per
cent in patients treated with the fixed dose combination
without ribavirin for 12 weeks. Adding ribavirin, or
extending duration to 24 weeks, did not increase the
cure rate. However, in non-responders with cirrhosis,
increasing duration of the fixed dose combination alone
from 12 to 24 weeks, improved the cure rate from 86 per
cent to 100 per cent.
page 8
In all three studies, the fixed dose combination treatment
was well tolerated and safe, with less than 1 per cent of
patients stopping treatment. Adverse events and laboratory
abnormalities were higher in those patients who received
ribavirin and were the typical side-effects associated with this
medication, such as fatigue, rash, nausea and anaemia.
(b) AbbVie Regimen
AbbVie has combined their protease inhibitor ABT-450, with
ombitasvir (a NS5A inhibitor), dasabuvir (a non-nucleoside
polymerase inhibitor) and ribavirin into the AbbVie-3D
regimen. The ABT-450 and ombitasvir is combined into
a single tablet taken once a day, while the dasabuvir and
ribavirin are both taken twice daily, a total of eight or nine
tablets each day. In three large Phase III studies (named
SAPPHIRE-1/2 and TURQUOISE-2), 1,403 patients with chronic
hepatitis C genotype 1 received the AbbVie 3-D regimen.
1. SAPPHIRE-1 evaluated 12 weeks of AbbVie-3D in patients
without cirrhosis, who had never been treated before.
Ninety-six per cent of patients were cured.
2. SAPPHIRE-2 evaluated the same regimen in patients
without cirrhosis, who had previously failed to respond
to pegylated interferon and ribavirin. The efficacy was
the same as in SAPPHIRE-1, with 96 per cent of patients
achieving cure. Whether the patient was a responderrelapser, partial responder or non-responder to previous
treatment of pegylated interferon and ribavirin had no
impact.
3. TURQUOISE-2 evaluated whether extending treatment
from 12 to 24 weeks was beneficial for patients with
cirrhosis. The overall cure rate was 93 per cent in patients
who had never been treated before and 91 per cent in
those who had previously failed to respond to pegylated
interferon and ribavirin. Extending duration of treatment
to 24 weeks helped those patients who were infected with
the hepatitis C genotype 1a subtype (which is common
in New Zealand) and were previous non-responders to
pegylated interferon and ribavirin.
Other than the expected side-effects of ribavirin and the
need to avoid certain medications (including statins and
omeprazole) due to drug interactions with the AbbVie drugs,
this regimen is very well tolerated.
EASL 2014 discussion
Much discussion took place at EASL about the exciting phase
III data. Both the Gilead fixed dose combination and the
AbbVie-3D all-oral drugs are expected to be approved by the
FDA within the next six to nine months, to become the new
standard-of-care for patients with hepatitis C genotype 1.
g in London, 9 - 13 April, 2014
It seems likely that the following recommendations
will be made for hepatitis C genotype 1:
•
•
Company /
trial name
Drugs
Cure rate
Gilead’s fixed dose combination without ribavirin
for eight weeks in patients who had never been
treated before and 12 weeks for people who
are prior non-responders (possibly extended to
24 weeks in genotype 1 non-responders with
cirrhosis).
Gilead, ION-1
(phase III trial)
Sofosbuvir and
ledipasvir
99% for 12 weeks treatment for patients
never been treated.
Gilead, ION-2
(phase III trial)
Sofosbuvir and
ledipasvir
94% for 12 weeks treatment for people
who had failed to respond to triple therapy.
For patients with cirrhosis, increasing
treatment length from 12 to 24 weeks
improved cure rate from 86% to 100%.
AbbVie-3D plus ribavirin for 12 weeks in both
patients who had never been treated before and
in prior non-responders (possibly extended to
24 weeks in genotype 1a non-responders with
cirrhosis).
Gilead, ION-3
(phase III trial)
Sofosbuvir and
ledipasvir
94% for 8 weeks treatment for patients
never been treated.
AbbVie,
SAPPHIRE-1
(phase III trial)
AbbVie-3D (ABT450, ombitasvir,
dasabuvir and
ribavirin)
96% for 12 weeks treatment for patients
without cirrhosis who had never been
treated.
AbbVie,
SAPPHIRE-2
(phase III trial)
AbbVie-3D (ABT450, ombitasvir,
dasabuvir and
ribavirin)
96% for 12 weeks treatment for patients
without cirrhosis who had previously
failed pegylated interferon and ribavirin
treatment.
AbbVie,
TURQUOISE-1
(phase III trial)
AbbVie-3D (ABT450, ombitasvir,
dasabuvir and
ribavirin)
93% for 24 weeks treatment for patients
with cirrhosis who had never been treated.
91% for 24 weeks treatment for patients
with cirrhosis who had previously failed
pegylated interferon and ribavirin
treatment.
Merck (phase II
trial)
MK-5172 and
MK-8742
Above 94% for 12 weeks treatment
regardless of whether cirrhotic, prior nonresponders or those with HIV.
BMS (phase II trial)
Asunaprevir and
daclatasvir
Above 95% for patients with hepatitis C
genotype 1b.
100% in patients with genotype 4 when
BMS791325 added.
Combined drug
companies (phase
II trial)
Simeprevir or
daclatasvir with
sofosbuvir
95 - 100% for patients with genotype
1, including cirrhotics and prior nonresponders.
Other Regimens
Preliminary Phase II study results from Merck and
BMS were also presented at EASL 2014. The Merck
combination of MK-5172 (a second generation
protease inhibitor) and MK-8742 (an NS5A inhibitor)
for 12 weeks, achieved cure rates above 94 per
cent across diverse patient populations including
cirrhotics, prior non-responders and those with
HIV infection. The BMS combination of asunaprevir
and daclatasvir achieved cure rates above 95 per
cent in patients infected with hepatitis C genotype
1b (uncommon in New Zealand). The addition of a
non-nucleoside polymerase inhibitor (BMS791325)
achieved cure rates of 100 per cent in patients infected
with hepatitis C genotype 4 (rare in New Zealand).
Finally, two smaller Phase II studies were presented
where investigators combined different classes of
drugs from different drug companies – a practice
common 20 years ago with HIV patients. The
combinations of either simeprevir (a protease
inhibitor from Janssen) or daclatasvir (an NS5A
inhibitor from BMS) with sofosbuvir (a nucleotide
polymerase inhibitor from Gilead) achieved cure in 95
to 100 per cent of patients with hepatitis C genotype
1, including cirrhotics and prior non-responders to
pegylated interferon and ribavirin plus boceprevir or
telaprevir.
Summary
In conclusion, this year’s EASL 2014 will be
remembered for two different reasons: (1) the swan
song for pegylated interferon for patients with
hepatitis C genotype 1 due to the arrival of short
duration, all-oral, interferon-free treatment, and (2)
the raising of the bar for cure rates now to above 95
per cent.
What is a...
Protease inhibitor? A drug that blocks the protease enzyme that
produces all the virus enzymes used in replication and also in building
the complete virus structure.
Polymerase inhibitor? A drug that blocks the polymerase enzyme,
which is necessary for replication.
Nucleotide polymerase inhibitor? A drug that stops the virus from
replicating by binding to the precise site of the enzyme where the new
hepatitis C RNA is formed (‘chain termination’).
Non-nucleoside polymerase inhibitor? A drug that stops the virus
from replicating by binding to the polymerase enzyme at sites away
from where the new hepatitis C RNA is formed.
NS5A inhibitor? A new drug that inactivates the polymerase enzyme,
blocks the assembly of a complete virus and blocks the release of the
newly formed virus from the infected cell.
page 9
news
World Hepatitis Day campaign launched in New Zealand
Last year hundreds of people called The Hepatitis
Foundation of New Zealand following the Foundation’s
World Hepatitis Day advertising campaign. The
Foundation expects this year will be no different.
World Hepatitis Day falls on Monday 28 July 2014. For the
month of July, the Foundation will be promoting the risk
factors of hepatitis B and C throughout the North Island
of New Zealand with its ‘Can you say yes?’ campaign.
The aim of the campaign is to raise awareness of hepatitis
B or C within communities, and to encourage those at risk
to get tested.
The Hepatitis Foundation of New Zealand offers a free
test for anyone at risk of hepatitis B or C. If diagnosed with
chronic hepatitis, people can enrol onto the Foundation’s
Health Minister
retiring in September
Health Minister Hon Tony Ryall announced he
will retire from politics at the next election.
“This is the right year for me to leave politics,
and I’m up for the next challenge,” said Mr Ryall.
“Our health services have been transformed
with a great effort by clinicians and motivated
teams across the sector.
“I am particularly proud of achieving record
elective surgery, faster cancer treatment and
more effective preventive healthcare for New
Zealanders.”
Prime Minister Hon John Key said “Tony will
leave the health service in far better shape
than he found it in 2008.”
Mr Ryall has been a member of Parliament for
24 years and is looking forward to being part
of the private sector.
free national programmes that provide specialist
assessment and triage in the community, routine testing,
education, resources and support.
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.
Keep a look out for the World Hepatitis Day campaign.
Encourage leaders in your community to stand
behind World Hepatitis Day, a global day that provides
international focus for people living with chronic
hepatitis. This day is an opportunity to raise awareness
and influence change in disease prevention and access to
treatment, which will ultimately benefit everyone.
Celebrate World Hepatitis Day on Monday 28 July 2014.
Seeking people with hepatitis C
for paid market research
As well as those who have been successfully treated
IMS Health is a market research company that specialises in
healthcare research. They are conducting research with people who
have hepatitis C, to understand how hepatitis C affects day-to-day
life, and how life with the condition could be improved.
•
Participants will not be required to provide any personally
identifiable information.
•
People who qualify will be compensated for
participating.
To find out more, please contact the recruitment team
at Prime Research:
•
Telephone: 09 523 4500 and ask for Melanie.
•
Email: [email protected].
Please feel free to pass on this information
to anyone you know who might qualify.
Source: www.beehive.govt.nz and www.tvnz.co.nz
Requested by AbbVie Limited.
page 10
news
Breaking through barriers for hepatitis health in Northland
Removing barriers to care, providing specialist community
health services and increasing health professionals’
knowledge of viral hepatitis have been key benefits of the
community hepatitis programme in Northland.
“A real struggle for Northland DHB is the geographical
disparity of our population,” said Dr Rachael Harry, visiting
Hepatologist at Whangarei Hospital. “Anything that we can
do that allows us to take services closer to where patients are,
and where patients’ needs are, and any support we can get
with that is beneficial to all.”
The community hepatitis programme was implemented
throughout Northland region by The Hepatitis Foundation of
New Zealand in partnership with Northland DHB. Community
clinics were set up within General Practices from the far North
to Kaiwaka, where the Foundation’s community hepatitis
nurse educated patients about viral hepatitis and provided
FibroScan® (a type of ultrasound of the liver) assessments.
“We worked in partnership with General Practices to help
increase testing of those at risk and to offer specialised
community health care to patients with viral hepatitis,” said
Susan Hay, Hepatitis B Programme Manager for The Hepatitis
Foundation of New Zealand. “Twelve community clinics were
organised within General Practices, with 245 FibroScan®
assessments completed.”
Dr Aniva Lawrence, GP and owner of Te Whareora O Tikipunga
Integrated Health Centre, felt this community hepatitis model
was very valuable and aligned well with integrated health care.
“I’m always keen on health services, that are traditionally only
accessible through hospital systems, moving into primary
care. I think it keeps us, as primary care providers, advancing
ourselves in terms of what treatments are available and what
technology is helping us to make better diagnosis. It’s also
about having these services in locations that are accessible
to patients and where they are used to accessing on a regular
basis.”
The Foundation found the programme not only benefited
people living with viral hepatitis, but it was also an opportunity
to further educate health professionals about viral hepatitis.
“I think I had a misconception about the whole illness. I was
surprised by the ways it can be contracted,” said a practice
nurse from a local Whangarei practice. “The programme has
raised awareness of hepatitis and has broken down some of
those barriers.”
Staff time constraints have always been present at General
Practices. “In the developmental stage of the programme it
was essential to collaborate with each General Practice to find
out how each practice worked and how they would like to
work,” said Ms Hay.
“It’s brilliant. It takes the pressure off my staff. It’s someone
coming in to give us a hand. I think it’s a very efficient way
of doing things,” said Cecily Gavin, Practice Manager of
Raumanga Medical Centre.
However, the portable community-based FibroScan®
machine has been a main draw card of the programme.
“I think it’s absolutely marvellous. To be able to offer [the
FibroScan®] to your patients is unbelievable really,” said
Barbara Jobe, Nurse Leader at Te Whareora O Tikipunga
Integrated Health Centre.
“It’s made diagnostics more accessible. Historically, anything
that’s invasive can put people off and can become a barrier.
It’s definitely made it easier for people to investigate further,”
said Dr Lawrence.
“With this programme not only have we been able to reach,
assess and educate patients who may otherwise not have
accessed healthcare, but the whole process of partnership
has allowed General Practitioners and General Practice
nurses to become involved and educated around the issues
of viral hepatitis. I think it’s been very valuable for the people
of Northland, and a very valuable adjunct to the treatment
that we can offer at Whangarei Hospital,” said Dr Harry.
“We’ve certainly seen referrals coming into the hospital of
people who, had they not been identified by this programme,
may well have died of their disease. This programme has been
very beneficial from my perspective.”
Epidemiology report to be released in New Zealand
An epidemiology report on hepatitis C in New Zealand is
currently in development.
•
•
This report uses mathematical modelling to provide
updated information on how the disease spreads and
how it can be controlled.
•
•
The report will include updated figures on:
• the number of people living with hepatitis C in New
Zealand
• how many people remain undiagnosed
• how hepatitis C is being contracted
the number of new infections per year
the future rates of cirrhosis, hepatocellular carcinoma
(HCC) and other complications
the cost of downstream effects
the date hepatitis C could be eradicated in New
Zealand.
The epidemiological study is being run by hepatitis
experts in New Zealand, including The Hepatitis
Foundation of New Zealand, along with experts from
overseas. This information is vital for long-term planning
for addressing hepatitis C in this country.
page 11
People in photo are models only.
Image by Greg via Flickr.com
personal story
About Emily
the weekends.
“I’m a cautionary tale,” said Emily, 40, of Auckland. “I think it’s
important to share my story.”
“I was aware that drinking was harmful for people with
hepatitis C, so whenever I went to the doctor, I got my liver
function tested. It would always come back perfect. My liver
was fine, so I thought I’d dodged that bullet.”
Emily’s life has been a rollercoaster ride, with extreme high
points and extreme lows. There is no doubt that her daughter,
now 4, has been the highlight of her life and a driving force for
many of her decisions.
“She’s just the most wonderful, bubbly, sparkly little girl you’d
ever meet,” said Emily. “I’d do anything for her. I just want to
make sure I’m here for my daughter.”
Emily’s past
Emily began her hepatitis C journey in Christchurch. In her later
teenage years she started injecting drugs with her friends.
“My friends and I started using [drugs] at the same time. We
were really good at using clean works but I think it would’ve
been a spoon.
“I would’ve liked to think we were really careful. Obviously we
weren’t careful enough.”
Her boyfriend found out he had hepatitis C when he was 19.
Emily hid from it for a while before finding out a year later.
“We were teenagers. We didn’t think about how much it was
going to affect us. I thought, if it did affect me, it’ll be 20 years
down the track when I’m really old. But it is 20 years down the
track now and I’m not old.”
At this stage in her life, Emily wasn’t speaking to her family. It
was only when Emily pulled herself out of “that dark hole of
addiction” that she reconnected with her family and told her
parents she had hepatitis C.
Treatment attempt one
In 2009 Emily decided to start hepatitis C treatment in
Christchurch.
“I was booked in to start treatment but discovered I was
pregnant. It was either do treatment or have the child.
Obviously the child wins out. I put looking after my liver to the
side so I could raise a child.”
Treatment attempt two
When her daughter was three years old, Emily, a single mum,
decided to initiate treatment again.
“We started all the tests again and that’s when I had my first
FibroScan,” said Emily. “I discovered my liver was 24.5 hardness,
normal is under 5. That had me at stage four cirrhosis. My
doctor told me that I had a 20 per cent chance of needing a
liver transplant within the next five years.”
This was one of her lowest points in life.
“I was devastated. I’d always been aware I shouldn’t drink with
hepatitis C but I thought it was OK because my liver function
tests said I was OK. I found out the liver can keep going and
going until the moment it stops. And that’s where I was.
“I lost it there for a while. It was so terrifying. I’ve got a little girl,
I can’t be getting a liver transplant.
“My mum was absolutely devastated and really angry with me
for wasting my potential. I mean, I’m angry with myself too.”
“The doctors said we need to get you onto interferon right
now. So I did six months’ treatment of interferon and ribavirin.”
Emily got clean on a methadone programme.
As she had stage 4 cirrhosis, she was told she had a 50 to 60
per cent chance of cure (with genotype 3). Emily lost a lot
of hair and ended up wearing a hat for six months. She had
bad nausea, body aches, issues with sleeping, weight loss,
migraines and fatigue.
“I was the first New Zealander to be on a maintenance dose
of suboxone. I was the guinea pig. I used suboxone really
successfully and was only smoking a bit of weed and drinking
socially.”
While she knew she shouldn’t be drinking with her hepatitis
C, Emily had a glass of wine with dinner or gin and tonics on
page 12
“It was pure hell. Treatment affected me really badly.”
But within a month of starting treatment, her tests showed
she had a zero viral load. Treatment appeared to be working,
which increased her motivation to continue.
Luckily, taking the ribavirin in the clinical trials didn’t further
aggravate her stomach.
“I didn’t really have any support in Auckland. My mum lives
in Christchurch. She stayed with us for three weeks at a really
hard stage of treatment, but the rest of the time it was just
[my daughter and I]. My daughter knew that mummy was sick
and trying to get herself better. She knew mummy was taking
medicine and was going to be tired for a while.”
“I told the doctors how I screwed my stomach up [in the
previous treatment]. The doctors said that not only is it good
for your stomach to eat with ribavirin, but the drug is also
absorbed 70 per cent better with food. If they told me that the
first time I would have made damn sure I ate with the drug.”
One thing Emily found out the hard way is that you should
always take ribavirin with food.
“I found it really hard. I’d get up at 7:30am but I wouldn’t be
able to even think about food until lunchtime. I’d have half a
banana with my pills. Then I’d have to wake up in the middle
of the night to have my evening pills to make sure they were
spaced 12 hours apart.”
“I’m not very good at eating during the day, I can’t handle
having breakfast or lunch. It makes me feel really sick.”
She tried taking the ribavirin pills without any food and felt
OK, so continued to take the pills on an empty stomach. It was
once she completed treatment that she began getting pains.
“Because I’d had the pills on an empty stomach I’d done
something to my stomach lining which had me in really big
amounts of pain. It was awful. I thought if you had it on an
empty stomach, it would give you stomach ache that day, not
six months later.”
I’d do anything to make sure I’m here for my
daughter... I was prepared for anything.
These stomach problems are now an on-going issue for Emily.
A week after Emily finished treatment, a close friend of hers
died of liver failure. This was a difficult time for Emily.
“He died of exactly what I was going through at that stage.”
Three months after treatment, the virus was still undetectable
in her blood. However, six months after treatment, at the final
test to find out whether she was cured of hepatitis C, her viral
load was triple what it was before treatment.
“The virus came back with a vengeance. I’m what’s called a
responder relapser, where the treatment worked, but the
virus was able to sneak back in after treatment. This was really
gutting because I found treatment really hard and it affected
how I was able to raise my daughter. The TV started to become
a babysitter. I felt like I had wasted almost a year of my little
girl’s life doing this treatment and it didn’t work.”
After treatment Emily had another FibroScan.
“My liver was down to 12.5 on the FibroScan scale, which is
almost half of what it was pre-treatment. So the treatment did
do some good. It gave my liver a chance to heal a bit, from
stage four cirrhosis to fibrosis. I no longer had cirrhosis which
was fabulous news for me.”
Treatment attempt three: clinical trial
Emily’s doctor referred her to Auckland Clinical Studies for
hepatitis C drug trials. In January 2014, she started on a 12
week clinical trial which involved taking ribavirin twice a
day plus sofosbuvir and ledipasvir. It wasn’t hard for Emily to
persuade herself to go through treatment again.
“I’d do anything to make sure I’m here for my daughter. I didn’t
care if all my hair fell out or if I bloated up to the size of a house.
I was prepared to try anything.”
Emily found the clinical trial refreshingly uncomplicated.
“It was so easy. I had no side-effects.”
As a result, Emily made herself eat when taking ribavirin.
For many years Emily had also been using a lot of herbal
remedies such as liver cleansers and herbal teas to purify her
blood to keep herself healthy, but she had to stop taking these
herbal supplements while on the trial.
“That was probably the hardest thing not being able to take
these herbs. For me, I believe these are what have helped my
liver, so it was scary taking away that security blanket.”
Emily finished her clinical trial mid-May 2014. She will find
out if she has been cured of hepatitis C in August. Her latest
FibroScan result is 11.3, which means her liver is continuing
to improve.
“My results are coming back as zero viral load, but obviously
I can’t get too excited about it. I’m hoping for the best, but
I’m prepared that it might not work and I might have to do
another drug trial.
“Needs must. I’ve put myself in this position, exposed myself to
the dangers, and now I’ve got to pay the price and go through
these treatments, hopefully before it’s too late.”
Advice for others
“Like I said, I’m a cautionary tale. Somebody’s got to be.
“People need to know to have ribavirin on a full stomach
because it’s more effective and so they don’t get gut problems.
People need to force themselves to eat. I know it’s really hard
but it’s really important.
“Do get your liver function tests done, but just because it
says your liver is functioning fine, it doesn’t mean there is no
damage. I would encourage people to get a FibroScan, if they
can, so they really know what the state of their liver is. I think
the FibroScan probably saved my life. I think without it I would
still be drinking and doing more damage to myself.
“Yoga and meditation are really good. I think herbal
supplements like milk thistle, dandelion and blood purifying
teas have helped me a lot.
“Don’t share any [injecting drug equipment like] spoons. Don’t
buy made up gear. Use a clean fit every hit. If you’re going to
[inject drugs], make sure you do it as safely as possible.”
The future
These days nobody knows that Emily has hepatitis C. “I’ve
really tried to keep it quiet. I’m trying to live a normal life and
I don’t need people thinking that I’m a junkie when I’m not. I
have been in the past but I’m not.
“Things will get better. If I look after myself, I’ll be able to be
there for my daughter.”
page 13
feature
Hepatitis C symptom #1:
Coping with fatigue
going away for a weekend or spending time with family.
I don’t think my family understands
why I’m always so tired.
It is often difficult to get others to understand fatigue. Share
your personal experiences of fatigue in a way your loved ones
can understand. It may help to compare it to the flu.
Image by Ben Seidelman via Flickr.com
Many people with hepatitis C experience fatigue. But why?
There are many theories out there but they all seem to
disagree. Some researchers believe that the hepatitis C virus
itself causes fatigue. They believe the increasing presence of
the body’s cytokines (small proteins within the body that are
a key part of the immune response) can lead to fatigue, in
the same way a flu would. However, others believe fatigue is
caused by factors that aren’t specifically related to the virus
itself, such as depression, anxiety, drugs or alcohol.
People with hepatitis C suffer from a range of
different symptoms, including mouth ulcers,
abdominal pain, itchy skin and nausea. However,
there is one symptom that the majority of people
with hepatitis C suffer from... and that is fatigue.
In this article we look at what it is, where it comes
from and how it can be managed.
I want to go out and do things,
but I’m always too tired.
What is fatigue? In simple terms, it is tiredness. It can be
described as lack of physical energy or stamina, sleepiness,
muscle weariness, an inability to concentrate, trouble with
memory, or ‘brain fog’. Fatigue is highly subjective, as more
often than not, the severity of fatigue is measured by a
person’s description of tiredness, rather than a test.
Fatigue can play a big part in people’s quality of life. It affects
people’s abilities to do activities they normally enjoy, such as
page 14
My whole body feels like it’s made
of lead. Sometimes I feel like I can’t
physically get out of bed.
While there is disagreement on those areas, two causes
of fatigue have been agreed on: people with cirrhosis and
people taking interferon almost always suffer from fatigue.
Other medications can also have side-effects that are similar
to symptoms of fatigue. Whether fatigue is brought on by
hepatitis C or not, it is important to check there are no other
underlying medical issues or causes for fatigue.
I would have my interferon
injections every Thursday night,
so on Friday I started feeling the
effects of it. Saturday was when I felt
like a 90 year-old man.
Dealing with fatigue can be frustrating and requires patience.
On page 15, we have provided some tips for dealing with
fatigue.
Sources: www.webmd.com, www.ncbi.nlm.nih.gov, www.hcvadvocate.org.
Include regular
breaks in your
day.
Reduce your
alcohol intake.
Alcohol can
make you feel
tired. It is also
bad for your
liver health.
Maintain an ideal bodyweight
as obesity can be another
cause of fatigue. Choose
healthy foods such as fruits,
vegetables and whole grains.
Foods high in fat, fried foods
or processed foods can
reduce your energy levels.
Exercise is an important
component of healthy living and
can help increase your energy.
It can also boost your mood. For
many people with fatigue, the
thought of exercising may seem
unbearable. Try going for gentle
walks. A study suggested people
with hepatitis C who took 10,000
steps at least three days a week
saw significant improvements in
fatigue levels.
Work or do things at the time of
day when you feel your best.
Side-effects from interferon are
most intense for the first few days
after the weekly injection. If you
are continuing to work while on
interferon, ensure your injections
are done at the end of your
working week so you have more
time to recover.
Take warm showers, rather than hot showers as hot
temperatures can be draining.
Try to manage the stress in
your life and, if possible, avoid
stressful situations. Prioritise
what needs to be focussed
on at this stage, and what can
be thought about later. Also
prioritise your day by doing
essential tasks first.
To do list
1 - Call Graham
2 - Organise payment
3 - Read magazine
Tips for dealing
with fatigue
Take time to relax. Try
yoga, meditation or other
relaxation techniques.
Have smaller
more frequent
meals during
the day, rather
than large
heavy meals.
Frequent meals
give your
body a regular
supply of fuel.
Don’t try to
sleep when you
feel fatigued,
instead sit down
and rest or do
lighter, easier
activities. You
will regain more
energy from
these sorts of
breaks.
Stop smoking
or reduce the
amount you
smoke. Smoking
can zap your
energy.
Improve your sleep health. If sleep patterns change,
this can make someone develop chronic fatigue.
Go to bed
and get up at
the same time
every day.
Don’t watch TV,
text or read in
bed.
Establish a
pre-sleep
routine.
Make sure
your bed is in
a dark, quiet,
cool room.
Avoid caffeine
or exercise late
in the day.
Avoid having
food before
bed.
Don’t overload your day. Pace yourself. Some days you may feel fine,
while other days you may find it difficult to get out of bed. Listen to
your body and give yourself some down time if you need it.
page 15
research
Alcohol’s effect on
advanced liver disease
for people co-infected
It has been documented for years that alcohol
increases the risk of advanced liver damage
for people with hepatitis C. A recent U.S study,
published in Clinical Infectious Diseases, found
that the effect of alcohol is drastically increased in
people co-infected with hepatitis C and HIV.
Pre-clinical studies have shown that HIV and
hepatitis C viruses can cause liver cell death. By
adding alcohol to this process, it can accelerate
the cell death, which leads to severe liver fibrosis.
“We’ve shown a much greater risk for co-infected
compared to uninfected persons at all levels
of alcohol consumption – from non-hazardous
drinking up to binge drinking and abuse or
dependence,” said senior author, Vincent Lo Re.
“This highlights how important it is for clinicians to
counsel co-infected patients on reducing alcohol
consumption. More communication and education
about the risks of alcohol may prompt patients to
reduce drinking or quit altogether, which will help
reduce the incidence of complications.”
Steroid users at risk of hepatitis
C and other viruses
The risks around injecting steroids is increasingly appearing in the
media. This may be because steroid use is on the rise.
A recent UK study, published in BMJ Open, found that, “levels of HIV
and hepatitis infection among men using image and performance
enhancing drugs have increased since the 1990s.”
Researchers from Public Health England (PHE) and Liverpool
John Moores University surveyed 395 men using image and
performance enhancing drugs. The median age of participants
was 28 years old.
They found one in 18 injectors had been exposed to hepatitis C,
one in 11 had been exposed to hepatitis B and one in 65 had HIV.
Overall, one in 10 have been exposed to one or more of HIV or
viral hepatitis.
“These findings suggest serious health implications for users of
image and performance enhancing drugs, but also for their sexual
partners and ultimately the wider community,” said Dr Fortune
Ncube, lead for PHE on injecting drug use.
The study found that use of psychoactive drugs, such as cocaine,
was also high amongst participants. Forty-six per cent had snorted
cocaine and 12 per cent had snorted or swallowed amphetamines.
Reference: Hope, V. et al. “Prevalence of, and risk factors for, HIV, hepatitis B and C infections
among men who inject image and performance enhancing drugs: a cross-sectional study.”
BMJ Open; doi 10.1136/bmjopen-2013-003207.
A total of 7,270 people participated in this study. Of
these, 701 people were co-infected with hepatitis
C and HIV, 1,410 had HIV only, 296 had hepatitis C
only and 1,158 were uninfected. Alcohol use was
determined by a questionnaire and whether they
had a history of alcohol abuse.
The study found that increased liver damage
correlated with increased alcohol use for people
with hepatitis C, HIV or both viruses. However, the
most advanced liver damage was found in people
co-infected with hepatitis C and HIV across all
alcohol use categories.
Reference: Lim, J. et al. “Relationship Between Alcohol Use Categories
and Noninvasive Markers of Advanced Hepatic Fibrosis in HIV-Infected,
Chronic Hepatitis C Virus–Infected, and Uninfected Patients.” Clinical
Infectious Diseases 2014; doi 10.1093/cid/ciu097.
Methadone patients receptive
to hepatitis C education
A U.S study published in Journal of Addiction Medicine found that
people who were enrolled in a drug treatment programme are
receptive to hepatitis C education and treatment.
Of 320 people enrolled in a methadone treatment programme,
half reported they had tested positive for hepatitis C, and 78 per
cent expressed willingness to participate in hepatitis C education
and to receive treatment for hepatitis C.
“One of the most important findings of this work is that people
who inject drugs do want to be educated about the disease and
that education is associated with willingness to be treated,” said
senior author Andrew Talal, MD.
Source: HCV Research and News.
page 16
cha
Person in photo is a model only. Image by Merje Shaw via Flickr.com
personal story
g
n
i
s
s
e
t
d
i ny
y
m
When I was 18 years of age I suffered a series of tragic events
in my life that lead to that moment I tried heroin for the first
time. It seemed to take away the emotional pain, which now
I see was only adding to it. I spent a couple of years using
heroin on and off, during which time I contracted hepatitis C,
from the boyfriend who introduced it to me. It was by mistake
that I used his needle. I was aware of it about a year after
contracting it. I was riddled with emotional pain and clouded
by the drugs, and tried to ignore my fate.
I stopped using the drugs when I was 20. For the next 12
years, while wanting to beat the virus, I worked hard and lived
a good life, but was also in denial of having the virus. I was
ashamed and so I filed it away in my “too hard basket”. This I
now regret. Over these ten years I started to feel the effects of
hepatitis C, which was mainly fatigue.
When I was in my early 30s, 13 years after contracting hepatitis
C, I finally had the support I needed from a loving partner and
an opportunity to beat the virus. I was also ready to beat this
virus. I had motivation to as I wanted children and I wanted to
live a healthy, long life.
In early 2013 I was accepted onto an international drug trial
at Wellington Hospital which was exciting and nerve-racking
at the same time.
On the days that were hard I read a mantra
in my diary that I wrote to myself on day one
of the trial. It was about the end goal and what
I wanted to achieve in life. This helped me
get through the hard times...
For the next six winter months I took interferon and ribavirin.
It was made easier by the staff at Wellington Hospital, the trial
nurse and doctor, who made me feel normal and treated me
with respect and dignity during each visit. I went regularly
for blood tests and check-ups, and was given excellent care.
From time to time the Hepatitis Foundation rang me for
support, which helped me feel not so alone.
The drugs made me very tired. Some days I found it hard to
go to the bathroom and other days I was okay. I managed
to get straight As through this time in my second year of a
bachelor’s degree at university.
While I was on the trial, my memory got better, which was
not a usual side-effect of the drugs. I had a body rash and
trouble sleeping, which was helped with mild sleeping pills
and lotions. I still managed to get through university. The only
thing I could not do was exercise for long periods of time. For
example, walking, I could only manage short distances so I
went aqua jogging instead. I was unable to cook and clean
as much as I used to, but that is where the support from my
loving partner came in.
On the days that were hard I read a mantra in my diary that I
wrote to myself on day one of the trial. It was about the end
goal and what I wanted to achieve in life. This helped me get
through the hard times, this along with a play list of music
that helped to uplift me that I played often.
I was one of the lucky ones on the trial that tested negative
from week four, and right through the trial, so I was able to
stop at six months in. Within a week, I felt like a new person,
and summer was about to start, perfect!
It has now been just over six months since I stopped taking
the trial drugs, and the virus is still clear from my system. Part
of me wished I had gone onto the drugs earlier, but I beat this
virus, I actually did it!!
I have now nearly finished my degree at university and as
hard as the time on the trial was in places, every moment
was worth it. My results from the trial helped to contribute
to others who want to beat hepatitis C, and now I feel better
than I have since before tragedy hit when I was 18. I am
planning a future, the future I only dreamed of before, that
now, I know I can achieve, and that some of you reading this
will be able to do too!
Written by Jenny from Wellington.
page 17
project update
Based on anonymous data from
the laboratory, over 400 people
have received a positive HCV
antibody test (requested by
General Practices) in the pilot
area.
Over 1100 people who have
chronic hepatitis C have been
referred to the pilot programme.
This is 37% more than the overall
target.
nts Enrolme
nt
&
tors
Rece
n
t
de
v
The Hepatitis
Foundation works
to enhance General
Practice care by
providing FibroScan
clinics at General
Practice wherever
possible.
do c
The programme has
been extended to
June 2015 in pilot
areas.
n
e
Wellington, Hutt
Valley, Wairarapa and
Bay of Plenty
r
fo
me
p
o
l
The
Hepatitis C
Pilot
h
unity Inform
a
tio
A rapid finger prick
test is being trialled
by The Hepatitis
Foundation of New
Zealand in partnership
with CADS
(Community Alcohol
and Drug Services),
New Zealand
Prostitutes Collective,
Needle Exchange
and prisons. This is a
hepatitis C antibody
test that provides a
result in 10 minutes. It
is a fast, effective test
that removes the need
for a venous blood
test.
ta Clinics
g da
in
n
i
t
st
Over 768 FibroScan assessments
have been completed. From
these, 84 patients were
diagnosed with cirrhosis and 29
with severe fibrosis.
m
om
ec
New referrals have
increased in response
to intensive advertising
phases in pilot areas.
te
Community clinics have been
held across 25 sites in the pilot
regions, with over 1000 clinic
hours completed.
Average waiting time is
currently 38 days from
referral to appointment.
Test people who have
ever injected drugs, ever
received a tattoo or body
piercing using unsterile
equipment, had medical
attention overseas or
immigrated from a high
risk country, had a blood
transfusion prior to 1992,
have ever been in prison,
or were born to a mother
with hepatitis C.
The Hepatitis Foundation of New Zealand
encourages health providers to enrol their
patients with hepatitis C in the Foundation’s
programmes.
HCV Antibody Test
HCV PCR/RNA Test
A peer support
worker phones
people who indicate
they want this type of
support.
Refer to the Foundation
Referrals can be made via Medtech Outbox document, email, online (www.
hepatitisfoundation.org.nz), fax 07 5712548 or send to PO Box 15 347, Tauranga 3144.
For more information about the pilot or what the Foundation can offer, regardless of where you live, please contact The Hepatitis
Foundation of New Zealand. Call 0800 33 20 10 or visit www.hepatitisfoundation.org.nz.
page 18
letter to the editor
Dear Editor,
I have just completed treatment for my hepatitis C condition.
Your hepatitis team and all the medical staff at Hutt District Health Board have been
most helpful in assisting me cope with the programme.
Like many hepatitis C sufferers, I was unaware that I had the virus in me for the past
25 years. It was only by chance, when I changed doctors, that I was asked to conduct a
hepatitis C test because my liver function tests appeared to be erratic.
When I was told I had the virus I was extremely keen to get on to treatment, knowing the
long-term effect of the condition. However, reading about the side-effects created some
doubts, as I am still working.
This is where your magazine became very useful and motivating. Reading about the
experiences of other sufferers and how they coped has allayed some of my personal
fears.
The hepatitis C nurse at Hutt Hospital and the specialist doctor were also extremely
helpful. They were forthcoming with the nature of the treatment; explaining in great
detail about what I could expect and how I should not be coy in seeking assistance if
things started to fall apart.
Apart from the first three weeks (these were by far the worst part of the treatment), I
learnt to cope with the side-effects and adjust my lifestyle accordingly. The hepatitis
C nurse was very helpful in this respect. She was always positive and encouraging. The
most difficult part of the programme was the need to abstain from alcohol. My treatment
covered the Christmas festive period and I had to make a conscious effort not to succumb
to temptation. But it is do-able if you remain focussed and think of the good outcome.
My last test results said that my treatment is working. But, like the doctor said, I can only
be cleared after a final test six months after the treatment. I am hoping for the best.
I would like to personally thank you and the Hepatitis Foundation team for sending
me a great magazine and general information about the infliction. I would also like to
thank my doctor and the hepatitis nurse at Hutt Hospital for helping me to complete my
programme.
To other sufferers, I would like to wish you all the very best in your treatment. Stay
focussed, stay positive and do not be afraid to ask for help if you need it.
Do y
ex p e o u h a ve
w o u l r i en c e a n
d l ik y ou
us a e t o t
b o ut e l l
?
ghts or
u
o
h
t
Any
ld
ou wou
y
s
t
n
e
comm
share?
like to
Wri te us a
let ter
re
nt to sha
Do you wa
story?
your hep C
king for
We’re loo
ir
share the
people to
ou
story. If y
personal
e to share
would lik
ney with
your jour
C, please
hepatitis
us.
contact
All the best,
Frank Chang.
Dear Frank,
Thank you for your wonderful letter. We really appreciate you sharing your journey with
hepatitis C and for your kind words about the Foundation and your treatment team.
As you mentioned, other readers find real value in the personal stories. I’m sure they will
appreciate hearing about your journey.
From all of us at the Foundation, we wish you all the best for your final results.
Kind regards,
Kate Sutcliffe (nee Perkins)
Editor of Talking Hep C.
Contact
0800 33 the editor on
20 10, em
t
a
l
k
i
n
ghepc@ ail
hepatitis
fo
o r s e n du n d a t i o n . o r g . n z ,
a le
P.O. Box
1 5 3 4 7 , tTt e r t o
auranga.
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
HepCentral on Facebook, Twitter, and YouTube.
The Hepatitis Foundation of New Zealand
0800 33 20 10, www.hepatitisfoundation.org.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, [email protected]
NZ Drug Foundation
04 801 6303, www.drugfoundation.org.nz