Contents
- Introduction
- The State of Play
- John Hill on Hepatitis
- Poetry
- Battling Fear
- Hepatitis B: A Primer
- In Defence of Antidepressants
- The Rhythm Exchange Concert
- Hepatitis B Needs Assessment
- Volunteering at HCCSA
- HCCSA Library News
Introduction
Another Hepatitis Awareness Week has come and gone. This year was a little different, as it was launched on the new global World Hepatitis Day. There were inevitable teething problems with this new international focus, so it was pleasing that the local events in South Australia went off without too many hitches.
In this issue there is less of a focus on hepatitis C than usual, as we wanted to explore the current state of hepatitis B in Australia. This is something else that came out of Hepatitis Awareness Week. This doesn’t mean that the Council is any less focused on hepatitis C. That remains our reason for existence! However, it is true that people living with hepatitis B also need someone to fight for them, and we have some of the relevant experience needed for that fight.
Finally, we present our usual mix of personal stories, news items, and project updates from the Council. As ever, we hope you enjoy this magazine, and please let us know if there’s anything liked, hated, or that you’d like to see covered in a future issue.
Next issue’s copy deadline is 15 August, and the magazine will be published in early September. See you then.
The State of Play
Where we are after Hepatitis Awareness Week 2008
Take a look at the artwork in our My Lucky Number exhibition (www.hepccouncilsa.asn.au). These artists have given us the beautiful, the confronting, the humorous, and even the political perspectives of viral hepatitis—many reflecting the diverse aspects of the lived experience.
As I think you will agree, these images reveal to us quite powerfully the human impacts of hepatitis B and C.
My Lucky Number, the title of the exhibition, is a reference to the global campaign slogan for World Hepatitis Day—‘Am I number 12?’. This refers to staggering fact that 1 in 12 people in our world has chronic hepatitis B or C. That’s more than 500 million people.
Another staggering statistic to grapple with is that liver cancer is the fastest-growing cancer in Western society, and the second most common cancer in the world. Globally, over 80% of liver cancers are attributable to chronic infection with hepatitis B or C.
Thankfully, in Australia, we are not the worst affected. But with estimates of around 200,000 people with chronic hepatitis C, and between 90,000 and 160,000 with chronic hepatitis B, there is no room for complacency.
In fact, while there has been a national response to hepatitis C, there is still some way to go to adequately address this virus, particularly in terms of prevention, increasing access to treatment for the diversity of people affected, and coordinating care for those with end-stage hepatitis C-related liver disease.
Latest estimates state there are around 10,000 new infections each year in Australia, with around 630 in South Australia. With 60% of people affected by hepatitis C in SA over 39 years of age, and a significant number these people having been infected for over 20 years, the burden of disease from hepatitis C over the next 5-10 years in this State will be considerable. We need greater infrastructure in the health system to meet the demands of this epidemic.
With Awareness Week’s focus on the global picture of viral hepatitis, I would particularly like to highlight the emerging hepatitis B epidemic in this country.
There is a very effective vaccine to prevent hepatitis B, but many countries do not have widespread access to a vaccination program for babies, where the risk is greatest of developing chronic hepatitis B. 90% of infants exposed develop chronic hep B, whereas only 5% of those adults exposed develop chronic hepatitis B. This is due to the differences in development between a baby’s and an adult’s immune system’s ability to fight off infection.
Australia is very fortunate to have had universal hepatitis B vaccination programs amongst infants, catch-up adolescent programs, and programs for people at high risk in Australia since 2000. However, the existing burden of disease is high, especially in our indigenous communities, where infant vaccination has been patchy, and with immigration from highly endemic countries, where vaccination programs are poor.
In SA, there have been around 4,000 notifications of hepatitis B between 1996 and 2007, and the majority of these are chronic hepatitis B diagnoses. In 2006, of those people diagnosed with hepatitis B for the first time, 35% were of Asian background, 34% African, and 8% indigenous. These statistics demonstrate that chronic hepatitis B is affecting some of our most vulnerable communities in SA.
Available treatments are not a cure, but can prevent progression to liver cancer by controlling viral replication of the virus. However, only a small proportion of people with chronic hep B receive treatment: around 2%.
At our HeplinkSA Forum in May, we heard about findings from the recently undertaken National Hepatitis B Needs Assessment (see here), which found that people with chronic hepatitis B were usually ill-informed about their infection; that there are few resources available for people and their families that would assist them to understand the infection and maintain their health; that GPs and other health professionals require opportunities to strengthen their knowledge and skills around chronic hepatitis B; that immunization programs are poorly promoted or implemented within the communities most at risk; and that there is a need to increase access to treatment for people with chronic hepatitis B.
In Australia, chronic hepatitis B is an emerging epidemic—as is the associated liver cancer epidemic—and to date there has been no coordinated response, either nationally or in each of the State or Territory jurisdictions. This is despite increasing numbers of health professionals calling for such a response over the past few years, as they witness in their daily working lives the growing devastation of chronic hepatitis B on individuals, families and communities.
The Hepatitis C Council of SA would like to add our voices to those calls and suggest to our Health Minister that South Australia could take a lead role in addressing chronic hepatitis B in this country.
Of course we appreciate that there are huge, competing demands on the State’s health budget, and we do not envy the Minister the task of having to work out the priorities, but I would ask him to consider this fact: that where there has been no investment, allocation of even the smallest amount of resources can make the biggest difference! Let’s begin taking chronic hepatitis B out of the too-hard basket!
Kerry Paterson
John Hill on Hepatitis
SA’s Minister for Health looks at the present and the future
On World Hepatitis Day, in over 200 cities around the world, people were encouraged to consider the question ‘Am I number 12?’. That’s because approximately 500 million people, or 1 in every 12 in the world, has chronic hepatitis B or C. This is a staggering statistic and we must do more to ensure the spread of these diseases is severely curtailed.
In South Australia, between 1996 and 2007 there were 3902 hepatitis B notifications. As hepatitis B is a preventable illness, raising awareness among those most at risk of infection is vitally important. The key public health response for the prevention of hepatitis B is the statewide hepatitis B vaccination program.
In the 2007–08 financial year so far, SA Health has distributed 3,080 doses of hepatitis B vaccine to babies at birth, and 4,441 doses to adults. Of these, 33% were given to children and 20% to adults as part of the New Arrivals and Refugees Immigration Program. And free access to vaccines is also provided for people who are at most risk of acquiring the infection, including those with hepatitis C.
For hepatitis C, in SA, there were 14,747 notifications between 1995 and 2006. Hepatitis C remains a significant health issue, and affects approximately 1% of the Australian population.
In May 2005 representatives from all sectors of government and a wide range of community-based and non-government organisations came together to establish the first strategic planning document for hepatitis C in SA. The South Australian Hepatitis C Action Plan 2008–2011 is now nearing completion, and is the culmination of much effort by a variety of stakeholders.
The action plan sets priority strategies, activities and performance indicators, and will provide direction for the management of hepatitis C over the next three years. The plan focuses on the nationally agreed priorities of preventing new infections, increasing the number of people accessing treatment, and addressing priority populations such as Aboriginal and Torres Strait Islander people.
As part of developing the action plan, strategies to expand treatment services in hospitals, primary care and community health settings and target prevention programs to at risk groups will be explored.
On World Hepatitis Day, governments around the world, including here in Australia, were asked to commit to putting in place an effective viral hepatitis program by the year 2012. In SA we are establishing the SA Health Steering Committee on HIV/AIDS and Hepatitis C.
This new peak body of government, NGOs, researchers, clinicians and affected communities will monitor the surveillance and epidemiology of HIV and hepatitis C in the community, and provide expert advice on planning, implementing, monitoring and evaluating strategies and activities.
This information will be of great value in advising how we can provide even better services to community and prevent the spread of these diseases.
The Hon John Hill, Minister for Health
This is an edited version of Minister Hill’s speech, given at the launch of Hepatitis Awareness Week on 19 May, 2008.
Friends reunited: Oliver and Minister Hill meet on North Terrace, while a horrified minder looks on.
Poetry
The centrepiece of our Awareness Week programme this year was the My Lucky Number art exhibition. You can see some of the artworks exhibited, and read what their creators had to say about them in our Art Gallery. A number of poems also formed part of this exhibition, and we reprint them here with the kind permission of their authors.
Spinning out-in control
Twenty-seven years living with hep C growing from the crown on my head
The joys, the hardship sometimes a tonne adding a new layer
The aches, the laughter the circle in motion taking another step
All ways heavy a burden to carry like hurricane or typhoon
Life lifts high to reach for you, like cycle of nature of human life
You so precious reminding me of evolution, another level
The spiral in my mind, occurring for thousands of years
The primordial impulse and endless enthusiasm
My life as a double helix, the galaxy the macro scale of influence in each task I undertake
The needle the fingerprint and whorl of my futures existence
Everything emanates from a center point the possibilities of expansion into infinite
I stand here gentle breeze twisting in my hair my spirals always open-ended
Within I am with you, within you I be with
Each person present reflected in one and one reflected in everyone else
All of us reflected in each other, none so different
Brett Johnson
Isolation
Subtle mask.
A smile held tightly
Tied in place
By hangman’s knots
Hung upon the ears
Hides the fragile self
Alone, in those darkest places
Laughter flows
In casual conversation
As words fall like leaves
From outstretched autumn branches
Dry, brittle
Bereft of meaning
They crumble beneath careless feet
Hollow smile stretches wider
Stemming words of incautious disclosure
And the day grinds down.
Flame washed skies
Of restful promise
Bring no ease for those
Sleepless in isolation
Twisted, turning
Tangled in the bindings
Of night’s imagination
The spawn of unuttered thoughts
Caper in contorted play
Unguarded they dance in the mind
Through shuttered eyes
The moon’s light falls
Refracted lustre
Of a wild pearl hung suspended
Against the black
Velvet backdrop of sky
This gentle light seems innocent of the day
I lay my head
Upon the cool window sill
Let my thoughts wander
Loose upon the quiet
Whispered doubts
Confusion
Fear of future’s unknown
Pale moonlight reflections
Trace the day
Engraved into my face
Chaotic conceptions are
Soothed into weariness
To sleep, in isolation
Anne Jackson
Stains of Soul
One strain in a thousand,
I felt disgraced and disembowelled like a Samurai falling on his own
sword disempowered.
Seventeen and celled with men of stature choices were made in a
sanded hour,
I am a man not a boy from the needle the sword I would not cower.
Drawing the shortest straw which broke my back,
I last of three shared misery in a silver spoon shaped bullet we shot up smack
Contracted a killer I now harbour a virus which scars livers and lives,
Once naive healthy brown are now tinged with all knowing yellowed snake
Like eyes.
High times came at a costly price
Poisoned veins poisoned my life
Hep C common in prison more common than the common cold,
I wish I was schooled about the eye of a tiger and in what may the eye
of needles or silver bullets could hold.
Aaron Mays
Battling Fear
The fight against hepatitis B is also a battle against fear.
Imagine if you will a potentially life-threatening disease that afflicts a minority group unwilling to call for help because it may unleash a public backlash. The consequence is easy to predict: a silent epidemic that places the community at greater risk.
I’m not talking about HIV/AIDS, a disease Australians intelligently and courageously addressed a generation ago through a big public education and treatment campaign. I’m talking about hepatitis B.
Despite the fact that chronic hepatitis B affects up to 160,000 Australians, few understand much about it. For important public health reasons, it’s time we did and time we insisted that state and federal governments adopted a national action plan to deal with it.
Hepatitis B is a serious illness. Put most simply, it is a viral infection of the liver transmitted by infected blood or bodily fluids, and in most cases it can be treated with medication. If left undiagnosed or untreated it can lead to liver disease, cirrhosis, liver cancer, liver failure and death. While it is classed as a sexually transmitted disease, in fact the main route of infection worldwide is from mother to baby. Luckily in Australia we can guard against mother-to-baby transmission through vaccination of all infants shortly after birth.
The biggest proportion of those infected with chronic hepatitis B in Australia - who often feel constrained from speaking out - are Australians born in countries with high levels of hepatitis B. The shame associated with the disease and the fear of provoking anti-immigration sentiment is stopping people living with the disease from speaking out and causing health officials to drag their feet in addressing it. The director of the World Health Organisation’s Collaborating Centre for Virus Reference and Research, in Melbourne, Professor Stephen Locarnini, recently said the fear of stirring up xenophobia was so great that government health officials regarded the issue as politically ‘radioactive’.
The result is that the disease has received only a fraction of the funding of other viral illnesses. Disturbingly, it is estimated that fewer than 5% of those with hepatitis B are on some form of treatment - and those who are often have difficulty accessing adequate services. There are no dedicated funds for medical research into the disease or for creating community-based awareness and treatment programs. This contrasts with the more successful approaches Australia has adopted to combat HIV/AIDS and hepatitis C.
It’s true Australia has a number of positive programs to prevent hepatitis B. For instance, the blood supply is screened for it, as are pregnant women, and there is a universal vaccination program for babies and adolescents. Ninety-four per cent of all infants are now immunised against it by the age of one.
But this approach does nothing to help people already living with chronic hepatitis B. The efforts have to be accompanied by a strategy to educate migrant communities and primary care providers about the best way to manage the disease. Hepatitis B can’t be cured but treatment can suppress the virus and stop its progression to more serious life-threatening illnesses, so awareness and treatment are absolutely vital.
Ultimately, what is needed is leadership. We have to counter ignorance and fear with education and science. Both are especially important given that the actual risk of newly arrived migrants transmitting hepatitis B to others is low. No matter what the bigots say or the gullible believe, we can’t put up walls against viruses, particularly when dealing with chronic hepatitis B and C infection, which affect one in 12 of the world’s people and when so many nations lack universal hepatitis B immunisation programs.
This means combating hepatitis B is not an immigration issue but a public health risk minimisation issue.
The task for health authorities is clear: to improve our prevention efforts here in Australia, most notably by undertaking a public education campaign; to make the effective treatments that exist available to all Australians living with the disease; and to play our part in tackling and treating the disease globally - because in a nation like ours built on immigration, a global solution is the only real solution.
Having been a government minister in the 1980s and ‘90s, including three years as health minister, when Australia faced up to similar public health challenges, I know Australians are big enough and smart enough to put aside our prejudices and confront hepatitis B without fear. If we don’t we risk a rise in the number of people with severe liver disease and greater pressure on our health services in the future. We must tell our leaders that it’s time to act.
After a decade of comparative inaction on hepatitis B, we have a new government elected with a pledge to reduce chronic disease. Tackling hepatitis B is its opportunity to live up to that important promise.
Australia has led the way before in public health campaigns of this sort and we can do it again.
Brian Howe, a former deputy prime minister and health minister, is patron of Hepatitis Australia and a supporter of the National Hepatitis B Alliance.
Reprinted with permission.
Hepatitis B: A Primer
A beginner’s guide to the other hepatitis epidemic
What is it?
Like hepatitis C, hepatitis B is a virus. When hepatitis B virus enters the body, it travels to the liver, where it lives and multiplies in liver cells. The presence of the virus in the liver stimulates the immune system to kill it.
Strangely enough it is the body’s immune response, not the virus, that causes most of the inflammation and damage to the liver.
The impact of hepatitis B infection depends on a person’s age when they become infected. Infants with hepatitis B infection almost always develop a long-term (chronic) infection, whereas people who get the infection as adults have a 95% chance of clearing the virus from their body.
Many people with hepatitis B do not get sick, and do not know they have hepatitis B virus infection.
Some people experience tiredness, nausea and jaundice. Infants rarely develop symptoms of infection. About 50% of adolescents and adults develop jaundice when they first get the infection, which is called acute hepatitis B.
Because both attack the liver, there are obviously many similarities in the effects hepatitis C and hepatitis B have on the body.
Chronic hepatitis B
A person is diagnosed with chronic hepatitis B when they have the virus infection for longer than 6 months (confirmed through blood tests). Chronic hepatitis B develops in approximately 5% of adults, some children and most infants with the infection. People with chronic hepatitis B are likely to have a lifelong infection, and although they generally remain in good health, they have an increased risk of developing serious complications, such as cirrhosis and liver cancer.
Importantly, people with chronic hepatitis B have the potential to spread the infection if they do not follow some simple precautions.
Hepatitis B transmission
Hepatitis B is significantly easier to transmit than hepatitis C. It is spread when blood and other infected bodily fluids (including saliva, semen and vaginal fluids) enter the bloodstream either through a break in the skin or through mucous membranes. A pregnant woman with hepatitis B infection can transmit the infection to her baby at the time of birth—this is the most common way the virus is spread in developing countries around the world.
Unsterile injecting equipment or unsterile tattooing or body-piercing are also significant problems. Close contact, including the sharing of toothbrushes, razors, nail files or other personal items, may lead to the exchange of body fluids, as may injuries incurred playing contact sports.
Donated blood is screened in Australia, but receiving a blood transfusion in some countries can still be extremely risky. Accidental needlestick injury or splashing of infected blood or body fluids can be an issue.
Testing for hepatitis B
There are several blood tests available to diagnose and monitor hepatitis B. The interpretation of these tests is not always straightforward and may require the expertise of a GP or liver specialist.
There are other tests that can detect changes in the liver, such as liver ultrasound or scan, and liver biopsy. These tests are used to diagnose cirrhosis and liver cancer, just as with hepatitis C.
Treatment for hepatitis B
There are several types of antiviral medicines available to treat hepatitis B in Australia.
Some are taken as an oral tablet and have very few side-effects. However, these treatments often need to be taken for a long time, which means the virus may develop resistance to the medicine. Pegylated interferon can be given as a weekly injection for up to 12 months. It can cause significant side-effects.
Each treatment has different benefits and side effects.
Reducing the risk of liver damage
Just like people living with hepatitis C, those living with hepatitis B should eat a balanced diet that includes a variety of foods to meet the body’s need for energy, growth and repair. Unless a person with hepatitis B has significant liver damage, there are no particular foods that should be favoured or avoided.
Alcohol intake should be minimised to one standard drink per day and should be completely avoided if severe scarring or cirrhosis are present. Similarly, smoking cigarettes should be reduced and preferably stopped.
It is also important to avoid contracting other blood-borne viruses, such as hepatitis C or HIV, as this can dramatically affect a person’s health and cause further liver damage.
Vaccination
The hepatitis B vaccine is very safe and provides immunity more than 95% of the time. The vaccine is usually given by three injections over six months. In Australia, all infants and adolescents aged 10 to 13 years are provided with hepatitis B vaccination at no cost. It is strongly recommended that people at risk of hepatitis B exposure get vaccinated.
For more information, phone 1300 437 222, or you can go online and visit www.hepatitisaustralia.com.
Information in this article was based on B Positive: All you ever wanted to know about hepatitis B. This is available electronically as a PDF from www.ashm.org.au/b-positive/, or in hard copy from our library. See here for a review.
In Defence of Antidepressants
The last issue of Hepatitis C Community News featured ‘A Depression Story’, a moving story in which Linda, the author, described how she has lived with depression. She discussed her use of prescribed antidepressants, and how she found them to be extremely unhelpful: “I was out of this world, feeling as though I was living on another planet […] From my own experience, antidepressants are a nightmare.”
It’s certainly true that many people have had very bad experiences with antidepressants, and they are not suitable for everybody who is suffering from depression. On the other hand, it’s also important to recognise that many other people have found antidepressants to be extremely useful. Some of us have even found them to be life-saving.
I have been taking antidepressants for 12 years. For most of that time I have been on 30mg of paroxetine. This was prescribed for chronic major depression of biological origin. My family has a long and rich history of depression—a sibling, one parent and at least one of my grandparents are among those afflicted.
Other therapies might have helped, but I believe that medication is what I needed. For whatever genetic reason, my brain is rubbish at producing or managing its serotonin levels. I certainly feel no stigma is attached to the use of antidepressants. I’m like a diabetic who needs insulin.
Depression is classified as a potentially fatal disease, because of the number of sufferers who commit suicide. Antidepressants have saved numerous people from this fate, though it’s obviously impossible to measure how many.
I’m not pretending that there are no side-effects from my taking paroxetine. When I began to take it, the first few weeks were awful. I was extraordinarily jittery and agitated. I gained weight. In my case, though, this is not a problem, as I was noticeably underweight before (about 55kg), and am now in the healthy weight range (85kg) for my height (185cm). Part of this weight gain is attributable to the fact that I now enjoy food, whereas before I really couldn’t give much of a damn about it.
The only other problem I seem to have from the antidepressants is a tendency to need a mid-afternoon sleep on days when I’m not working. This is apparently quite common, but then plenty of untreated depressives have trouble getting out of bed at all. Other than this, I’m fine, as long as I don’t forget to take them each morning. If I do forget, I start to get noises in my head, including a disconcerting whooshing noise every time I move my eyeballs.
My own experiences are not something I can blithely generalise. I can’t say everyone who treats their depression as I have done will be as lucky. Some people have to try a number of different medications before they get anywhere, and withdrawing from one before trying the next can be a horror. Others may never find an effective pharmaceutical treatment. But please don’t be put off antidepressants unless your own experiences suggest you should leave them alone.
James Morrison
The Rhythm Exchange Finale
Concert concludes a highly successful project
After many months of preparation, the Rhythm Exchange came to a climax with a magnificent performance at the Parks Community Centre on Saturday, 17 May.
This collaborative project involved three communities—Afghani, Sudanese and Vietnamese—who all performed to an excellent standard. There were 80 people in attendance, and a smorgasbord of culinary delights from all three cultures was provided for all to feast upon and celebrate this wonderful event.
The education team from the Hepatitis C Council, PEACE Services (a program of Relationships Australia) and the Vietnamese Community of Australia (SA Chapter) were the participating organisations in this project, which aimed to provide a hepatitis C awareness initiative across a range of cultural groups. This final performance was held as a community event to mark the start of National Hepatitis Awareness Week.
Robert Petchell was superb in his musical direction throughout the life of the project, and can hold his head high for his achievements in the project.
A dress rehearsal was held the night before the community performance, and the nerves were showing. There was also excitement and anticipation evident as participants and workers began to realise the fruition of much sacrifice and practice.
The first performance under the guidance of drum tutor Anne Harrington was by the Afghani community, with Masoud Abrahimzadah singing a selection of beautiful Afghani songs. The young women on drums and Zia (a community educator from PEACE) complemented the singing and introduced us to a very vibrant and enticing atmosphere.
The Vietnamese men with support from Phil Jones gave a strong and resounding performance on hand drums. The joy on their faces was very apparent, and their skill and finesse in creating rhythm was outstanding.
The final performance was by the Sudanese community group, who performed some cool, laidback reggae songs. The singing was warm and unfolding, and the musicians and back-up singers (ably assisted by Yuggu Sebit, a community educator from PEACE) brought the songs together beautifully.
Throughout the practice sessions, rehearsals and the final performance, a group of Media, Arts and Production Skills course students from Hamilton High school documented the project as a way creating a story of the journey people experienced as part of the project. This documentary will be used as an evaluation tool and a model for organisations working in communities, as well as making a beautiful memento for the project’s participants.
A special thanks to everyone involved in the project: the performers, the drum tutors (Anne, Phil and Rob), and the community educators who supported the project (Hoa Nguyen, Yuggu Sebit, Zia Abrahimzadeh, Lola Aviles and Maggie McCabe).
From the HCCSA education team’s point of view, it has been a pleasure and honour to have worked with everybody who was involved with this project, and we feel very proud of our achievements and our commitment to make things work.
Leslie Wightman & John McKiernan
Hepatitis B Needs Assessment
A new study reveals serious shortfalls.
Myths put people at risk of hepatitis B infection.
This was a finding of the National Hepatitis B Needs Assessment, which was launched by La Trobe University recently. Many of the people talked to as part of the needs assessment research believed they had become infected because of a lack of information and education about hepatitis B.
“With up to 160,000 people infected with chronic hepatitis B in Australia, and increasing number of cases of liver cancer and death associated with hepatitis B, the disease deserves a greater focus by the health care system,” said Dr Stephen McNally, one of the authors of the report.
The National Hepatitis B Needs Assessment, carried out by researchers at La Trobe’s Australian Research Centre in Sex, Health and Society, is a world first in identifying the needs of people who are infected with the virus. Another unique aspect of this study is capturing the views of health professionals and their perspectives on how the Australian health care system can best meet the needs of people with hepatitis B.
The needs assessment has been launched through the internet. Dr McNally noted that “there has been no comprehensive response to chronic hepatitis B infection in Australia, and this report fills a significant gap in the national response to this complex virus by reporting on consultation with those people most affected by the disease.” Making the report widely available online will help spread this useful research widely.
The Needs Assessment report found that people infected with chronic hepatitis B often receive little or no information describing the impact of the virus when they are diagnosed. This lack of information meant that people exposed to hepatitis B are often confused about how to best look after their health, and rely on untrustworthy sources of information found on the internet.
Another finding of the report was that health care workers expressed a need to improve their skills in dealing with the health needs of people with hepatitis B.
The report calls for the development of a comprehensive strategic response to chronic hepatitis B by the national government, as well as by the state and territory governments.
This response needs to strengthen the hepatitis B vaccination program, increase treatment access, increase the amount of research, improve information available for people diagnosed with hepatitis B, implement healthcare workforce development programs, and develop testing protocols for general practitioners.
Jack Wallace, who wrote the report alongside Dr McNally and Jacqui Richmond, said that “this report shows the Australian health care system response to hepatitis B has relied on the immunisation program, but many people with chronic hepatitis B need information that helps them live with the virus, and to reduce long-term health care costs.”
There will be an in-depth interview with the study’s authors in our next issue.
Quotes from respondents to the study:
“I don’t think it bothered me very much at the time. I didn’t know that hepatitis B could be problematic. I don’t think that was explained to me.”
“Now that I know it damaged my liver, yeah, I would have been a bit better off if I knew more. If they told me a few years ago that I wasn’t really meant to drink alcohol, I would have cut down on it.”
“[Hepatitis B] ruined my life—everything that I worked hard for, all the potential that I had and, you know, I fucked up, and then you get into all that self-loathing, and the shame and the stigma, and this is all about my low self-esteem.”
“I might be more forthcoming with [people who knew that I had injected drugs] while with other people who knew I was gay I would disclose HIV infection—the rules always changed depending on who I was with.”
“We’ve got bugger-all resources, and I’m getting more calls from people with hepatitis B, wanting to know what they should do, and also get calls from family members with hepatitis B. People are really fearful, so when one partner is diagnosed with hepatitis B, the other partner is wanting to stay right away from them; won’t sleep with them, won’t have sex with them.” (Community Worker)
Volunteering at HCCSA
Meet some of the people without whom we couldn’t survive.
Volunteering at the Hepatitis C Council has opened doors for veterans Lyn and Phil. These two stalwarts of the HCCSA resource volunteers program, who have chalked up ten and a half years between them, said volunteering at the Council opens up social networks as well as other opportunities.
“It can lead to other things if you want it to, and not if you don’t want it to,” said Lyn who started volunteering with HCCSA in February 2003.
“I had just completed treatment for hep C at the time, and felt I had to get out of the house,” she recalled. “I’d heard about the Council and felt that with my personal experience I might be able to make a positive contribution.
“In my time here, I’ve made friends and picked up some work as a peer educator and information stall organiser.”
The social aspect of volunteering at the Council was strongly endorsed by Phil. He came from Sydney some seven years ago. “I was still fairly new to Adelaide back in 2003, when someone suggested that I volunteer at the Council,” he said.
“It gave me the opportunity to make contact with people and to contribute my skills without pressure.
“The social aspect is something I enjoy, even if it can sometimes be negative—it’s still good. The friendliness of the people I have experienced here is all part of Adelaide for me. It’s something I had never experienced in Sydney.”
Both Phil and Lyn acknowledged that work in the resource room can sometimes be repetitive and appear to be a drudge, but added that there was a variety of tasks, and that keeping busy took the boredom out of the job.
They said the best part of volunteering at HCCSA was being “treated like a human being”.
“We are allowed to use Council vehicles, we have a travel allowance—even if it’s a very small one—and free beverages and monthly lunches,” Phil pointed out. “I feel included and get a sense of belonging here—a sense of ownership of the Council even, to some extent.”
“If you enjoying learning new skills, and like working with other people in a supportive, happy environment, the Hep C Council is a good place to volunteer,” said Lyn. “And the resource room is a good place to start.”
For more information about volunteering in the Information and Resources program at HCCSA, email This e-mail address is being protected from spambots. You need JavaScript enabled to view it or call 8362 8443.
The Hepatitis C Council of South Australia would like to give the profoundest thanks to our many volunteers. They keep our Info and Support Line running, they get our resources out to people in need, they run and staff our information stalls, and they help with the thousand-and-one different jobs that crop up around the place during the year. We couldn’t exist as an organisation without them—indeed the Council began as a group entirely run and staffed by volunteers. To all of you, we say thank you!
HCCSA Library News
There have been a number of publications on Hepatitis B added to the library recently, and a new book, 101 Things Your GP Would Tell You If Only There Was Time by Dr Gillian Deakin (Random House Australia, 2007), which is worth a read.
Dr Deakin explains why it is necessary to build a positive and lasting relationship with a doctor you can trust, or at least one clinic, where your care can be comprehensive and continuous. If you go from one doctor to another it is virtually impossible for them to assess your health on one visit, and they could miss a correct diagnosis completely.
The doctor can only help you if they know you, your personality and your background, as well as your medical history.
In establishing a relationship with your GP, you will know that you can trust them to support you if you ever have to deal with a serious or ongoing illness. They will refer you on to a specialist if necessary, and organise hospitalisation or rehabilitation if that is required.
The book contains many practical tips on how to optimise your health care and get the most from your health practitioners. There is a section on nutrition and the myths about some of the more expensive alternative therapies.
Members of the Hepatitis C Council may borrow this book on their library card.
Judy Campbell
Assistant librarian
B Positive: All you wanted to know about hepatitis B—a guide for primary care providers
Australasian Society for HIV Medicine, 2008
Edited by Gail Matthews and Monica Robotin
This book is a boon to all those struggling to come to grips with the complex subject of hepatitis B.
Written in clear, relatively simple language, it is structured in logical sections covering areas such as epidemiology, testing and interpreting results, treatment options, natural history and transmission.
Along with the text explaining the issues and implications of each subject area, there are tables that act as useful summaries of the text.
The 12 chapters in the report are put together by leaders in the field, and contain references that would warm the cockles of the most demanding academic researcher. The guide can be read sequentially from chapter 1 to 12, or you could pick and choose the subjects that interest—or confuse—you most.
B Positive is highly recommended. It is currently available only in digital format, downloaded from www.ashm.org.au/b-positive/.
Cecilia Lim