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Hepatitis C
Where are we?
Where are we going?
By Professor Bob Batey...................................................................................................
Paul Harvey
Coordinator: Information and Resources
Hepatitis C Council of NSW
We are a community-based organisation committed to providing
high quality Hepatitis C Virus information, education, support and referral
services.
PO Box 432
DARLINGHURST NSW 1300
AUSTRALIA
Ph: 61 2 9332 1853
Fx: 61 2 9332 1730
The identification of the hepatitis C virus (Hepatitis C Virus) in 1989
delineated a disease previously masquerading under the title
of "non-A, non-B hepatitis". In the ensuing years,
hepatitis C has become a national epidemic, with more than 150
000 Australians known to be infected. It is estimated that an
additional 11 000 new infections occurred each year during the
1990s. Escalating rates of Hepatitis C Virus infection will have enormous
consequences, as 10-15% of people infected have the potential
to progress to end-stage liver disease, with all the
implications that has for health care services in the years
ahead.
Australia has taken many unique steps in its handling of the
hepatitis C epidemic. In 1994 and 1997, the National Health
and Medical Research Council published two major reports from
working parties comprised of specialists, general
practitioners and community representatives. These were
seminal in directing approaches to the diagnosis, treatment
and management of Hepatitis C Virus-infected people and, to a lesser extent,
prevention of further spread. Indeed, Australia was the first
country to develop a National Strategy for Hepatitis C Virus. NSW Health has
held successful Hepatitis C Awareness Weeks in 2000 and 2002,
which have increased public awareness of many issues relating
to Hepatitis C Virus. NSW Health has recently released a Treatment and Care
Plan for Hepatitis C Virus, which, among other things, emphasises the
importance of GPs in the evaluation and management of Hepatitis C Virus-infected
people. The possibility of accrediting appropriately trained
GPs to prescribe antiviral therapy for Hepatitis C Virus is also discussed.
So, where are we going?
The recent report by the Anti-Discrimination Board of NSW on
hepatitis-C-related discrimination presents compelling
evidence that there is still much to be done if we as a
society are to be seen to be dealing caringly and rationally
with this disease. The report highlights the disturbing
reality that most discriminatory actions against people
infected with Hepatitis C Virus are perpetrated in health care settings.
The Hepatitis C Virus Projections Working Group of the Australian National
Council on AIDS, Hepatitis C and Related Diseases, which
advises the federal Minister for Health on these diseases,
will report later this year on the increasing rate of Hepatitis C Virus
acquisition, highlighting the imperative of improving our
prevention strategies. The rate of infection is increasing, in
large part, because an increasing number of young people are
choosing to commence injecting drug use.
While public messages on safe injecting practices are promoted
widely, many young people ignore these messages in their early
phase of drug use. The Hepatitis C Virus antibody prevalence rate in those
injecting for less than three years fell from 22% in 1995 to
13% in 1997, but, despite enormous efforts to increase the
availability of clean needles to users, the rate has not
dropped any further.
Treatment availability and efficacy also remain problematic.
Australia offers, through the "highly specialised
drugs" program, combination therapy with alpha interferon
and ribavirin, providing a sustained viral response rate of
40% overall (ie, in 40% of treated patients, Hepatitis C Virus RNA remains
undetectable by polymerase chain reaction. Patients with Hepatitis C Virus
genotype 2 or 3 can expect a 60%-70% sustained response rate).
By limiting treatment to patients with fibrosis on liver
biopsy, the Pharmaceutical Benefits Advisory Committee led,
rather than followed, a trend to downplay the need for
treatment of all patients. This has highlighted the need for
management strategies for those not eligible for, or choosing
not to have, treatment. Many major centres now offer support
services and education programs, allowing individuals to defer
treatment, awaiting better options in the future.
Progress is being made in providing better services for prison
inmates, among whom there is a high prevalence of Hepatitis C Virus
infection. In the past, access to therapy has been limited,
but the appointment of specialists to Corrections Health
Services and the funding of a health study of the Tasmanian
corrections system is changing that. Prevention strategies are
harder to implement. Bleach is made available in most prisons,
and methadone programs are expanding, but needle/syringe
programs are not available.
Hepatitis C Virus-infected people from non-English-speaking backgrounds have
the added problem of a language barrier.
Treatment facilities have become increasingly aware of the
need to provide special support for these patients. This is
particularly important if antiviral therapy is to be
commenced.
What needs to be done better?
Greater attention must be directed to reducing spread within
the most at-risk community, namely our population of injecting
drug users. This group remains marginalised for reasons that
are easy to explicate but difficult to overcome. Debate must
continue on optimal ways to reduce the risk of young people
contracting Hepatitis C Virus infection. Needle/syringe programs, while
unpopular with many people in our society, have the potential
to reduce the risk and must be supported by those who are in a
position to influence policy.
We need to increase public awareness of the improved efficacy
of treatments. We also need to direct more effort towards
improving the evaluation and assessment of patients by GPs
before referral to busy liver clinics, so that only those who
are eligible for and wanting treatment are referred.
The Hepatitis C Virus research effort requires further support from major
funding bodies, and relevant groups are pursuing this
actively. A greater understanding of the virus, the mechanisms
of viral clearance and the immunopathogenesis of the disease
is required urgently. Research is under way to develop a
vaccine.
In summary, we are some of the way there, and making progress,
but there is still a long way to go!
Robert G Batey is Clinical Chair, Division of Medicine, John
Hunter Hospital, Newcastle, NSW.
Batey RG. Hepatitis C: where are we at and where are we
going?. MJA 2002; 176: 361-362. ăCopyright 2002. The
Medical Journal of Australia - reproduced with permission.
Fully referenced version of above article available in MJA.
Alarm bells ring at blow-out in new hepatitis C cases
If crime rates suddenly rose by 45 per cent, police ministers
would hold crisis meetings and task forces would be convened
to address the situation. We've now seen hepatitis C cases
rise by 45 per cent and we ask, what will it take for our
community to arrest this epidemic.
Australia has experienced an alarming 45 per cent increase in
estimated new hepatitis C infections - from 11,000 per annum
in 1997 to 16,000 per annum in 2001 - researchers reported at
a recent conference on hepatitis C.
The Third Australasian Conference on Hepatitis C, held in
Melbourne, Australia, in March 2002, provided a valuable
discussion forum for a wide range of researchers, clinicians,
health bureaucrats, health care workers and people affected by
Hepatitis C Virus.
The research team, led by Dr Matthew Law of the National
Centre in HIV Epidemiology and Clinical Research (in
collaboration with hepatitis C clinicians, researchers and
community representatives) formally revised the number of new
cases of hepatitis C from a previous estimated figure of
11,000 per annum, to an alarming 16,000 each year. The
significance of the increase has set alarm bells ringing
across the Australian hepatitis C sector.
Believed to be related to increased numbers of people using
injecting as their preferred method of taking drugs, the
increase puts further pressure on Australia's existing Hepatitis C Virus
prevention strategies to do even more. Here in Australia,
needle and syringe programs have prevented the explosion in
HIV cases and it was believed that they had capped the
incidence of hepatitis C infections. But this is now open to
speculation.
Health authorities are now aware of over 160,000 hepatitis C
diagnoses that have been reported to State and Territory
health departments.
Dr Law stated that of all people with hepatitis C in Australia
in 2001, there were an estimated 124,000 with chronic
hepatitis C and early liver disease (no or minimal fibrosis),
a further 27,000 with moderate to severe fibrosis, and 6,500
people living with cirrhosis. He also estimated there were 175
people with liver failure and 50 with liver cancer.
Unless changes are made, there are likely to be between
320,000 and 836,000 people with hepatitis C in 2020 -
dependant on future patterns of injecting drug use.
The Drugs and Community Action Strategy
Have you wanted to do more to help reduce Hepatitis C Virus transmissions?
Why not join your local drug action team and support your
local NSP outlets.
The 1999 NSW Drug Summit brought together drug experts,
families, representatives of interest groups, community
leaders and politicians and looked at possible approaches to
drug problems and provide a launching pad for the way forward.
In response, the NSW Government has adopted a
whole-of-government approach to problems associated with
illicit drug use. This covers a wide range of initiatives such
as education, prevention, treatment, rehabilitation, law
enforcement and community action.
Participants at the Drug Summit agreed that some communities
are looking for leadership and positive ideas for dealing with
illicit drugs. It was clear that the general community wants
to better understand, discuss, take ownership of the issue and
the solutions, and be able to address the causes and impacts
of drug problems.
The Drugs and Community Action strategy has initiated by the
NSW Government to support community-based action being
undertaken around the State to address illicit drug problems.
This includes the establishment and location of Community Drug
Action Teams, which are actual vehicles for community action.
A Community Drug Action Team is a group of people working
together to take action on drug-related concerns in their
community. The team usually includes Government,
non-government and community representatives who are committed
to:
*
finding solutions to local drug-related issues
*
working together with others in their community
*
developing and implementing a Local Drug Action Plan.
What does a Community Drug Action Team do?
*
identify drug-related problems in their local community
*
identify gaps or potential overlaps in local services which
work with drug-related issues
*
work with organisations and other community members to meet
community needs
*
develop a Local Drug Action Plan describing how to take action
on local drug-related issues
*
contribute to the evaluation of the Drugs and Community Action
Strategy.
What are possible CDAT projects?
Local information and promotional materials, including:
*
flyers listing drug and alcohol services in the area
*
a CDAT newsletter about local drug-related activities and
resources
*
a local retailers' voluntary code of conduct covering the sale
of solvents to young people
*
contributions to the Drugs and Community Action Strategy
website to let other areas know of your CDAT's activities
*
translation of drug and alcohol information into different
languages.
Community events and activities, such as:
*
alcohol and drug free events for young people
*
local media activities on CDAT projects
*
a community event to promote local drug treatment services
*
community meetings on key issues of concern, to drive and
inform the activities of the CDAT
*
local training programs on drug issues for organisations in
the area
*
activities that support the National Illicit Drug Strategy
Campaign and NSW Government's Community Drug Information
Strategy.
Supporting better service delivery through:
*
developing processes to assist the referral of people between
local organisations and available services
*
identifying gaps or overlaps in drug-related services and
opportunities to address these, eg opportunities to link
Commonwealth, State and local initiatives
*
monitoring local issues and trends relevant to drug issues.
From PAC to Pammy and PAC again
By Stuart Loveday
Media campaigns are highly effective tools for educating
people about hepatitis C.
But when a major celebrity like Pamela Anderson declares her
positive status to the world, it really puts the issue under
the spotlight.
March 2000 saw the launch of the world's first publicly funded
mass media hepatitis C public awareness campaign (PAC) in NSW.
Costing around $1m, and lasting one month, it raised awareness
of hep C, and helped dispel myths about its transmission
routes and relationship with other kinds of viral hepatitis.
Since then there has been some reluctance to run a similar
campaign at a national level, largely because of its potential
cost and thus competition with other crucial needs and
priorities.
But the NSW campaign, Understanding is the Answer, had a major
impact on the levels of the NSW public's awareness about
hepatitis C, and on individual people with hepatitis C.
Apart from the positive formal evaluation, the NSW Hep C
Helpline received many calls in which people expressed
absolute relief and revelation.
One woman said through tears: "At last I can see the
government is taking hep C seriously".
The value of formal public awareness campaigns cannot be
underestimated, and further work must be done in this regard,
especially given the findings of the Enquiry into hepatitis C
related discrimination carried out in 2001 by the NSW
Anti-Discrimination Board of NSW.
But what of the educative power and influence of opportunistic
media stories and news items? After all, these have the
distinct advantage of being free. Apart from the time and
effort, of course, spent working with journalists and
producers ensuring appropriate referrals are made, affected
community representatives are trained and supported and the
right slant and language is used in the eventual product.
Enter Pammy stage left. Pamela Anderson, of Baywatch,
Penthouse and Hollywood fame, contracted hepatitis C from
sharing a tattoo needle with ex-partner Tommy Lee, drummer in
a rock band.
Who doesn't know Pammy? Apart from the tit-for-tat counter
argument that Tommy had never had hepatitis C (we can leave
that debate for later) a substantial section of the world sat
up and took notice. What followed was an amazing media frenzy.
Newsweek in the USA ran its cover story on 22 April on
hepatitis C (and did an excellent job of it). NW and New Idea
magazines in Australia had rather less accurate attempts at
describing hepatitis C, but did a great job in letting
everyone know that doctors told Pammy: "You could
die!" Fortunately New Idea followed up with a cover quote
from Pammy 'Hep C can't beat me'. (Go Pammy!)
Channel 9's Today on Saturday current affairs program ran a
segment on 11 May with terrific community, health professional
and government involvement. The New York Times carried an
article on improving hepatitis C treatments.
Sydney's Daily Telegraph and Sun Herald, Melbourne's The Age
and ABC National Radio Health Matters program all picked up
the Pammy angle while covering hepatitis C news and features.
There's no argument that Pammy's disclosure has had a
significant impact on media interest in hepatitis C, and,
consequently, on public education and awareness.
Debate will continue of course about the value of
sensationalist headlines. Some maintain that as long as the
facts in the story below are accurate, then Pam's HEP C SHOCK
- Doctors tell her 'You could die' type headlines are
acceptable. Others say everything about the story must be
accurate and measured. My money's on hooking the reader or
viewer into the article, then hitting them with the right
facts.
So where does this leave us? Well clearly we need to continue
to explore planned and proactive campaigns to raise public
awareness. But we also need famous and fabulous and frankly
bold Australian celebrities who have hepatitis C to stand up
and say "Yes, I have hepatitis C and I want to
help."
An Australian celebrity's disclosure of their positive
hepatitis C status would have the power to bring about
effective, meaningful and above all, wide-reaching education
and public awareness.
Stuart Loveday is the executive officer of the Hepatitis C
Council of NSW, and president of the Australian Hepatitis
Council.
Hepatitis C research and the NHMRC
Everything you wanted to know about hepatitis C research but
were too afraid to ask. Penny Main reports on the national
research game plan.
Introduction
The Strategic Research Development Committee (SRDC) is a
Principal Committee of the National Health and Medical
Research Council (NHMRC). Its objective is to develop
strategic research capacity in areas where current research
does not match the magnitude of its importance to health care
in Australia. The SRDC provides a mechanism through which the
NHMRC can target research funding, and SRDC has a
discretionary budget to commission such work.
In 1998, the SRDC felt that social and behavioural research
into hepatitis C warranted a strategic focus and made Aust $1
million dollars available for research that would:
* identify strategies that
will slow the spread of hepatitis C, and
* improve the quality of
life of people with the disease.
Twelve projects were funded under the program. These covered a
range of issues from looking at why young people start
injecting drugs, to identifying those 'at risk', to harm
minimisation and examining the quality of life, social and
health needs of people living with hepatitis C.
Living with hepatitis C
The Program was ground-breaking because it is the first time
that the psychosocial aspects of living with hepatitis C have
been targeted. Previous studies of the quality of life of
people living with hepatitis C have tended to reflect the
clinician's perspective on hepatitis C issues. Symptoms such
as fatigue, nausea and muscle/joint pain are well known in
association with hepatitis C infection. What has not been
identified before, however, is the occurrence of 'hep C
attacks' - clusters or 'episodes' of multiple symptoms,
typically comprising overwhelming fatigue, hypersensitivity,
irritability, pain and depression/mood swings.
Exploring the experiences of people living with chronic
hepatitis C infection, Michael Dunne (Queensland University of
Technology) found that over half the people he interviewed for
his study experienced 'hep C attacks'. They varied widely in
the time of onset and duration.
However, apart from fatty foods and alcohol (which induce
nausea and abdominal pain) no triggers were identified. These
'hep C attacks' had a major effect on the quality of life for
people living with hepatitis C because of the uncertainty
caused by not being able to predict their onset or severity.
Other factors contributing to this feeling of uncertainty were
heightened by doubt about the origin of symptoms, fear that
the illness is a long-term disability or will shorten life,
and lack of social acceptance.
Pyschosocial factors such as these feelings of uncertainty and
depression experienced by many people living with hepatitis C
need to be taken into account by health professionals working
with people who have hepatitis C.
"Although general practitioners are confident about the
clinical management of hepatitis C, they are somewhat less
confident about the psychosocial aspects of care," said
Leena Gupta (Central Sydney Area Health Service).
Dr Gupta conducted a national survey of the needs, outcomes
and patterns of care for general practitioners in diagnosing
and managing hepatitis C. Almost one-third of general
practitioners reported that they would like to acquire better
skills in pre- and post-test discussion for hepatitis C.
Sadly, despite its importance where the test result is
positive and although testing services report that they offer
pre- and post-test discussion, many people living with
hepatitis C report that they do not receive pre- or post-test
discussion. A study conducted by Wendy Loxley (Curtin
University of Technology) found that three-quarters of
injecting drug users attending a testing service in Western
Australia said they had not received any pre-test discussion
and less than twenty percent had post-test discussion. This
was despite the testing services stating that they provide
pre- and post-discussion. A similar picture was found among
Victorian women living with hepatitis C where Sandy Gifford (Deakin
University) found that 77% of women did not receive any
pre-test discussion and 51% of women did not receive any
post-test discussion at time of diagnosis. Almost one quarter
of women participating in the study did not know that there is
treatment available for hepatitis C.
Interestingly, the same study found that
levels of satisfaction with the way they were told about their
diagnosis were strongly associated with the length of
consultation time rather than the person, place or way that
the results were given. Pre- and post-test discussion is
vitally important for people living with hepatitis C.
Professor Gifford's study also found that current injecting
drug users were more likely to report negative treatment by
health professionals. In many cases this led to confusion
about hepatitis C and issues around pregnancy/breast feeding
and, in some cases, women were advised not to go ahead with
pregnancy because of their diagnosis. In other cases, sharing
their positive hepatitis C status threatened custody or access
to their children. The study concluded that the physical,
mental, emotional and social impact of living with hepatitis C
has been underestimated and, in keeping with Wendy Loxley's
findings, there is a need to improve information, support and
referral before and after testing and at the time of
diagnosis. Stigmatisation, relating to both the infectiousness
of hepatitis C infection and its association with injecting
drug use, was also the most enduring aspect of living with
hepatitis C infection found in Michael Dunne's study.
Stopping the spread of hepatitis C
Access to hepatitis C testing and discussion services is
essential to reduce the social and economic costs of hepatitis
C infection. A study conducted by Nick Crofts and Michael
Kerger (Centre for Harm Reduction, Macfarlane Burnet Institute
for Medical Research) showed that injecting drug users are
comfortable being tested and counselled by a peer in a
familiar and convenient environment. Educational counselling
received from a credible and empathetic peer was highly likely
to be acted upon.
"Needle Exchange Programs need to be resourced to employ
and train an extra staff member to deliver testing and
counselling for hepatitis C and other blood-borne viruses and
to deal with overdoses," said Michael Kerger.
"Such a development would be a useful initial step
towards improved primary health care for drug users, and
generate further information about modes of delivering service
to this marginalised population."
Although most people injecting drugs are aware of the danger
of contracting hepatitis C through shared needles and most
actively avoided doing so, the Australian blood borne virus
and injecting drug use study conducted by Craig Fry (Turning
Point Drug and Alcohol Centre, Melbourne) found that more than
one-third of participants regularly engage in practices, such
as being assisted with injecting by someone who had just
injected themselves. Such practices provide opportunities for
contact with another person's blood.
Mr Fry found that injecting in a public place was a key
determinant of higher risk practices because access to
necessary facilities is limited and the injection itself
occurs in hurried conditions. Other determinants included
buying and using drugs in a group and being in a relationship
where injection equipment was shared as an expression of
trust.
The study conducted by Erica Southgate (University of New
South Wales) found that injecting drug users who knew their
hepatitis C status had a better knowledge of the risk factors
involved in hepatitis C transmission compared to those who did
not know their hepatitis C status or are untested. However,
those who knew their status also have higher levels of sharing
fits and other equipment than those who did not know their
status or were untested. It was suggested that this could be
because they did not think that the messages applied to them
as a group.
The Southgate study also found that 'speed' users have riskier
injecting practices than heroin users. Heroin use has
been extensively studied and a shift to other injecting drugs
due to the heroin drought has been noted. A profile for speed
users compared to heroin is currently being developed by the
research team.
A common theme emerging from the research was that there is a
lack of culturally and contextually appropriate information
available for injecting drug users.
"Injecting drug users access different sources of health
information to other people in the community," Sandy
Gifford said.
Lack of creative, culturally informed resources for injecting
drug users of Vietnamese ethnicity led a team headed by Nick
Crofts and Peter Higgs (Centre for Harm Reduction, Macfarlane
Burnet Centre) to develop resources for harm reduction in
collaboration with Vietnamese injecting drug users. These
resources included the development of activities including
role-plays, discussions, agency visits, videos and guest
facilitators.
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