Contents
- Editorial
- Hepatitis C & Indigenous Australians
- An Animated Community: The Wodlitinattoai Project at Kalteeya
- A New Liver Clinic in Action: Nunkuwarrin Yunti’s latest development
- You Can’t Stop the Devil from Enjoying Himself
- How youpla can ged Hepatitis C?: Creating a resource for Torres Strait Islanders
- Unravelling the Mysteries of the Glycaemic Index
- Will I Find a Partner?: Relationships & Hepatitis C
- Circles of Information
- Fred’s Story (Part 1): A personal look at alternative therapies and treatment
- Investigating Narrative Technologies
- HCCSA Library News
- A Positive Birthday
Editorial
Twenty-two thousand Indegenous Australians live with hepatitis C. Sixteen thousand have chronic hepatitis C. These numbers are shocking enough, but when considered in the light of the size of the Aboriginal population, they’re truly horrible.
This issue we take a look at the Indigenous experience of hepatitis C. We cover personal stories, education, diet, health and more. We also feature the latest developments from the Council.
We hope you enjoy it. Please let us know what you think.
Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .
Hepatitis C & Indigenous Australians
In Australia, some 264,000 people have been exposed to hepatitis C, including a disproportionately large percentage of Aboriginal and Torres Strait Islander people.
Although Aboriginal and Torres Strait Islander people make up 2.4% of the Australian population, it’s estimated Aboriginal and Torres Strait Islander people constitute 8.3% of the Australian population living with hepatitis C.
This means that—unlike the HIV epidemic, where Aboriginal and Torres Strait Islander people had the same exposure rates per capita as the general population—Aboriginal and Torres Strait Islander people are four times more likely to be exposed to the hepatitis C virus than non-Indigenous Australians.
Given that two-thirds of hepatitis C notifications are reported without Indigenous Australian status being recorded, it’s even possible that the true rate of hepatitis C among Indigenous Australians is even higher. For example, accurate data from Western Australia and the Northern Territory indicates Aboriginal and Torres Strait Islander people account for 10% of all new hepatitis C notifications.
Currently it’s estimated that 22,000 Aboriginal and Torres Strait Islanders are living with the hepatitis C virus, of which 16,000 are living with chronic hepatitis C. Although rates in the non-Indigenous population have improved, rates of hepatitis C within the Aboriginal and Torres Strait Islander population continue to rise.
Why does this inequity exist and continue to grow? The National Hepatitis C Strategy 2005-2008 identified three main priority populations for which action is urgently needed: Aboriginal and Torres Strait Islander people who engage in risk behaviour, people in custodial settings and people who inject drugs.
However, in addition to being identified as a priority population in their own right, it’s important to note that Aboriginal and Torres Strait Islander people are also disproportionately represented within these two other at-risk priority populations.
Imprisonment has been shown to be an independent risk factor for hepatitis C, with hepatitis C prevalence among all prisoners averaging 40%, and rising as high as 70% for female inmates.
Aboriginal & Torres Strait Islander people are 14 times more likely to be incarcerated than non-Indigenous Australians, and constitute 27% of the total prison population.
Additionally, Aboriginal and Torres Strait Islander inmates often serve shorter sentences than non-indigenous Australians, so the rate of hepatitis C in custodial settings has greater potential to translate into increased infection rates within the general Aboriginal and Torres Strait Islander population.
The 2001 Inmate Health Survey reported that 53% of male inmates and 73% of female inmates had a history of injecting drug use. The report also indicated 24% of male and 43% of female inmates continue to inject while incarcerated.
Reports from inmates indicate there is sharing and reuse of injecting equipment. Other activities within prisons such as tattooing and body piercing also put inmates at increased risk of acquiring hepatitis C.
Outside the prison environment numerous studies have found that more than 50% of Aboriginal and Torres Strait Islander injectors use shared injecting equipment. In comparison, only 18% of non-Indigenous injectors report sharing another person’s used syringe. Remember that it’s estimated that 90% of all new hepatitis C transmissions are attributable to sharing of injecting equipment.
The recent needle and syringe program survey identified an increase in participation in injecting drug use by Aboriginal and Torres Strait Islander people (rising from 8% to 10%), and also revealed an increasing prevalence of hepatitis C among Aboriginal and Torres Strait Islander participants (a rise from 52% to 68%).
The National Aboriginal & Torres Strait Islander Sexual Health and Blood-Borne Virus Strategy 2005-2008 recognises the need for a whole-of-primary-health-care-sector approach to addressing blood-borne viruses in Aboriginal and Torres Strait Islander communities.
A key priority of this strategy is access to needle and syringe programs, and the increased capacity of the health and community workforce to address all aspects of Aboriginal and Torres Strait Islander blood-borne viruses.
Troy Combo
Hepatitis Australia
References & Further Reading
• National Aboriginal & Torres Strait Islander Sexual Health and Blood-Borne Virus Strategy 2005-2008
• Hepatitis C Virus Projections Working Group: Estimates and Projections of the Hepatitis C Virus Epidemic in Australia 2006
• The 2001 NSW Inmate Health Survey; NSW Corrections Health
• Australian Bureau of Statistics Year Book Australia, 2004
• The Harm Reduction Needs of Aboriginal People who Inject Drugs, 2001, National Drug Research Institute, Curtin University of Technology
• Australian NSP Survey; National Data Report 2001-2005, National Centre in HIV Epidemiology and Clinical Research
An Animated Community: The Wodlitinattoai Project at Kalteeya
Salisbury Centacare, through their Wodlitinattoai project, has joined forces with the Hepatitis C Council of SA to address hepatitis C issues in the Aboriginal communities of northern Adelaide. We are working with a group of community leaders who meet weekly at the Gawler Community Health Service program, ‘Kalteeya’, to learn about and address health issues of particular concern in their communities.
Nicci Parkin, an educator with HCCSA, has been meeting with the group weekly since March this year to look at what educational strategies are needed for Aboriginal people living in those northern communities. The project partners received a grant from Community Benefit SA to employ a community artist to work with the group to develop an educational resource. Lawrence Wilkes, a multi-disciplinary artist, was engaged to provide skills development and co-ordination with this project.
It was decided to make a ‘claymation’-based film. Claymation is the art of building clay models and animating them by manipulating them frame by frame. Building models of people overcame the tricky business of representing actual people on the film, as well as being fun to produce and watch. The film’s key message is simple: “It’s OK to talk about hepatitis C.”
This message was identified by the community as a straightforward way to address misunderstandings about hepatitis C and what many people feel is the community’s silence over the issue. It’s hoped it may go some way to dispersing the ‘shame’ of hep C, by promoting a whole-of-community approach to hepatitis C awareness and support.
With a philosophy that states ‘our community is the same as yours; we all share the same concerns for our families’, the film will be also accessible for other communities. It should also provide a useful tool for hepatitis C educators and community workers everywhere, as well as being a valuable local resource. And it’s a lot of fun to put together!
Nicci Parkin
A New Liver Clinic in Action: Nunkuwarrin Yunti’s latest development
Nunkuwarrin Yunti is the foremost community-controlled centre in Adelaide, providing health care and community support services to Aboriginal and Torres Strait Islander people. Its name was adopted from the dialects of the two largest clans in the southern region, the Ngarrindjeri and Narungga, to represent the community, the services and the spirit in which they are provided. It means ‘working together’.
A relatively recent development at Nunkuwarrin Yunti is the introduction of the liver clinic. This clinic—of obvious interest to people living with hepatitis—is available to everybody, whether or not they are of indigenous background.
The Hepatitis C Community News talked with Dr John Ring, hepatologist and gastroenterologist, and Leslie Dunbar, community health worker and clinical nurse, both of whom work in the liver clinic.
JOHN RING: “The liver clinic’s been running for a little over a year now. There’s a program on Thursday morning, when I’m here with Leslie, but sometimes it spills over. It’s open-access, so anyone can come in. Sometimes Leslie sees people at other times.”
LESLIE DUNBAR: “Nunk is an Aboriginal-controlled health centre for everyone. None of our programs are exclusive.
“In the liver clinic, we’ve got 3 appointments every week, because we like to have an hour for each appointment. It’s been a bit slow to start, as word gets around, but we’ve been going for just over a year now. As of July we’ve had three people on treatment, and two have finished, and we have more people who want to start.
“Considering that at the moment it’s just me, that’s the number, but we’re not limited by potential. If we have the people crowding in, we can get the manpower. At the moment there’s no waiting list.
“It’s a liver clinic, not just a hep C clinic, though we see a lot of hep C. You can refer yourself; you don’t have to have a doctor’s referral. Or your case manager can refer you, or a friend. “
JOHN: “You can’t predict who’s going to be suitable for treatment. Lifestyle can contribute to how someone will go, but it doesn’t predict how someone will go. You can’t say that people who are actively injecting are unsuitable, and it’s good that they no longer are prevented. It’s personal resilience that indicates how well you’ll cope with treatment.
“It’s important for those people currently using drugs that they consider treatment. When you think of it from a public health point of view, the people who are injecting and who have hepatitis C are the people most likely to spread it around, if they’re not doing it safely. If you want to contain hepatitis C or get rid of it, they are the people you need to treat.
“Treating people 20 or 30 years later, that’s fine, and it’s very important for those people to get well, but that’s not going to stop the spread of the disease. Individually it’s very important, but at a wider level it does nothing to stop hepatitis C.”
LESLIE: “Most of our clients would still be living what might be called unstable lives—still injecting drugs, for example, and perhaps without a fridge to keep the medication in. That’s not an exclusion, by the way. It can be a positive factor in applying for housing, for example. But then there are others, holding down jobs, looking after kids.”
JOHN: “There’s been a significant number of people coming in who have said they’re hep C antibody-positive, but who’ve turned out not to have current infection. Which is great, but it shows the level of misinformation, or the lack of education, that they equate being antibody-positive with actually having hepatitis. People who’ve been living in fear for 10 years, scared for their children, and they don’t even have the virus.
“Lack of education can be very defeating—people say, ‘I have hep C, so I’m stuffed. I may as well binge on drink, or whatever.’ It’s education that can change that, but there are a lot of health professionals who don’t have the knowledge or the willingness to give the client that information or help.
“I think these people are tough. Treatment side-effects are nothing compared to some of the problems they’ve encountered in their lives. And looking at stability—it starts to become a moral judgement, and that can be a problem. Knowing how expensive the treatment can be, some people might find themselves, without even meaning to, making that judgement over who “deserves” it. It has nothing to do with whether the treatment is likely to work.”
LESLIE: “What I’ve found interesting is how little impact the side-effects have had, compared to what is out there, in terms of the horrible stories. One of my clients said, ‘I was homeless and withdrawing from heroin on the streets, in winter. Treatment had nothing on that.’
“What we don’t know, in terms of treatment, is how, with people who are still using, the substances they are injecting might affect the treatment. How do various amounts of heroin or methamphetamines affect the treatment process? We’d love to know, because perhaps 60% of our clients would be affected by that.
“Having done a lot of networking, it’s amazing how few people know Nunkuwarrin Yunti is here. Also, everyone assumes it’s a service for Aboriginal people only. It’s Aboriginal-run, but it’s for everybody. Anyone can come along, absolutely anyone.
“Certainly we’re accessing more indigenous people than you’d see at most health services. But people from across all walks of life come here. We’re like a GP-plus. We have endocrinologists, psychiatrists and hepatologists who visit. We have specialist diabetes clinics, social workers, drug programs, drinking programs, gambling problem programs. There’s pretty much everything here you could need for your physical health, and also your mental, spiritual, psychosocial health. And people who come here tend to get to know a lot of the workers here, and access them for different problems at different times of life. Then you don’t have to tell your story to every new person. And for indigenous people there are various events, like the ‘Circle of Men’ event which took place recently, which can offer all of this extra support.
“There are many people who’ve worked in the sector in SA for years and have never heard of Nunk, but there are people who’ve just rocked up in the state less than a day ago, and they get in touch with us. The metropolitan GPs have been very supportive. We’ve got another clinic in Elizabeth, in Brady Street, and a women’s community health clinic in Noarlunga. And we also do outreach, like the clean needle program and homeless outreach work. Outreach is perfect because you can engage with clients who might never come in to the offices.
“We target homeless people in the metro area with the clean needle program—people who are unlikely to access any other services.
“If you empower someone to think about their own health, engage them in a treatment process, and trust them to comply, then you actually give them the skills and respect that they may never have had before, and they start to make decisions about taking care of themselves that they might never have made before. If you keep putting services in big, tertiary institutions, there are a lot of people who won’t go. A clinic like this in a place like Nunk meets a very real need.”
JOHN: “Nunk is something the state should be very proud of. A group in the community with such a lack of support and resources, and they’ve been able to create what in many ways is a model health service.”
Interview by James Morrison
You Can’t Stop the Devil from Enjoying Himself
Justin is an Aboriginal man who grew up in Sydney but now—after a pretty dramatic life—living in Adelaide. He found out he had hepatitis C several years ago, and has recently successfully completed treatment at Nunkuwarrin Yunti’s liver clinic. He talked with the Hepatitis C Community News about his experiences.
My life’s been a real pain in the arse, put it that way. When I was four I drowned in my uncle’s pool. He saved me, and they had to pump me out. And I had two ribs broken when I got kicked by a horse. When I was six I was hit by a car, and I’ve got brain damage and stuff from that. I died several times in the ambulance on the way in. I had to have bolts screwed into my skull from that. And your head’s growing so fast at that stage, with the bolts in, it really hurts.
I’ve had one of the worst lives you could have. When I got the insurance payout from being run over, my mum ran over me again just so she could get the money. I had the worst childhood. But I’ve gotten past that to where it doesn’t bother me anymore.
I don’t know much about my people. I’ve had a pretty complicated family history. I’m trying to find my dad. I’ve never seen him, but it’s something I want to do. I want to see him. I’m in the middle of the process of finding my dad through Nunkuwarrin Yunti’s SA Link-up (see p9 -Ed.).
It’s been a couple of years now, so I’m not as enthusiastic as I was. My son’s getting older now. I wanted him to meet my dad while he was still a young fella. He’s five now, turning six at the end of the year, so he’s getting older. He’s at school now—he loves school, which is cool.
I’ve been coming to Nunk for four years or so now, though not for the hep C until recently. I finished treatment a few months ago.
I grew up in Sydney with some of the best speed, the best heroin you could get. It was coming out of the boots of fellas I knew, you know?
I moved to Queensland for a while, after Sydney. I was running away from home and my mum sometimes, then I’d come back. She didn’t know I had a problem until a couple of years ago, when I found out I had hep C. I told her, said, “Mum, I’m sorry, but there’s nothing I can f—king do about it.”
She said she doesn’t want anything to do with me ever again. My mum, she owes me thousands of dollars, and she ran me over with a car, so I don’t really care what she thinks, but I thought she ought to know. When I went back to go to my auntie’s funeral my family fought with me and tried to put me in a psycho bin up in Queensland.
I went and saw the psychiatrist at the Maryborough Base Hospital, and he said, “There’s nothing wrong with you, fella, except you’re stressed out. Take a Temazipan, go home and get away from your family!” I’ve been right ever since then.
Because of the car accident I’ve been concerned my whole life that it was me that was the problem, but I guess over the years I realise how much of it’s been my family. I have nightmares and shit from what I’ve been through as a kid. It’s bad. And now I’ve got my own kid I was worried I was going to turn into what my stepdad was like, but I haven’t. I’m the best dad in the world, mate! I was belted when I was a kid, but I don’t do that, I’ve broken that pattern. Sorry, it makes me cry, thinking about this.
Me and my ex-girlfriend, we’re split up, and my son lives with her, but he comes over all weekend, and we make cakes, cook dinner, and he’s always getting involved with what I’m doing, and he loves that. We play basketball together. On treatment, when I was feeling a bit crook, he was getting sad because I wanted to do stuff with him but I just didn’t have the energy. I wasn’t in the mood.
I’ve used needles for 17 years of my life, and now I’ve given up. I’m so happy, man. My mum, I don’t talk to her, so she doesn’t know, but my ex-girlfriend’s family, I’m close to them, and they’re so happy.
I used to be 130kg, but I burst my appendix and lost 96kg in three days. It was so bad. I used to do fencing work—I shouldn’t have been working, but I couldn’t stand being in the house with my mum all day. I started doing fencing work with some friends; it wasn’t much money, but it helped me get away from things. This one week, we were working so hard on this 180-hectare property. I was in so much pain, bent over this table, and my stepfather kicked me, right near where my appendix was, and it burst. I was in hospital for three weeks—you can see the scar from it, it’s huge!
I found out I had hep C in 2001, just before we had our son. When I first found out I wanted to kill myself, man. I thought it was like AIDS or something. They don’t teach you about hep C, and I never knew anything about it. I had some really staunch friends, and I told them, “Look, fellas, I use needles and I’ve caught hep C. I need help to get off the needles.” And the friends left me. They don’t see me any more. They just disregarded me because of hep C and using needles. I got the hepatitis from sharing needles. We washed the things, but that’s not enough.
Now I’m glad I’ve given up needles. My friend, he still uses sometimes. He’s 54 and he still wants to do it. I’m like, “I’m half your age, Bro, and I’m giving up that shit. I don’t want to still be doing it when I’m that old. I can see what it’s doing to you, mate.” I’m worried about someone giving him a bad batch. But you can’t stop the devil from enjoying himself, eh?
I was in lock-up in 1999, in Queensland, and I got out just before Christmas in 2000 and came to Adelaide five days later, where I met my girlfriend. She got pregnant—it wasn’t intentional, but it was the best thing I’ve ever done, man. If it wasn’t for my son I know I would’ve killed myself. I go through a lot of stress. Lately I’ve just been breaking out crying over nothing. The past is what always hurts me, and I can’t seem to get shot of it. And I hurt my girlfriend because of that, and she didn’t understand why. I was violent and unfaithful, and I regret that, and it’s hurting her now. I was on speed all the time, it was my fault, but I couldn’t control it.
We’re not together any more, but we’re closer than ever before. We’re really good friends now, the way we weren’t when we were a couple. She stuck by me when I found out about the hep C. She’d learned about it from school, they were taught lots about it, and if it wasn’t for her knowing that, I would’ve done something stupid. She could tell me it was OK, it wasn’t that bad.
I didn’t do anything about it for years, but I was coming here, to Nunkuwarrin Yunti. I probably know everyone who works here, and I’ve been away for a ceremonial weekend, an Aboriginal ceremony. I don’t have family of my own here to turn to. I get lonely, because there’s some stuff you can’t talk to your mates about. I need my dad. And talking to doctors, most of them won’t believe you if you used to be a junkie—they think you always will be, and you’re just after tablets or whatever.
I got talking to Leslie [Dunbar] and the docs, and Leslie asked me if I wanted to do anything about it. I decided yes, I should go on the treatment. The first month I was fine, but then I had a bit of hair falling out, and I was drowsy and a bit nauseated, but the worst was I couldn’t get up sometimes. I was totally unenthusiastic about anything. Like a huge shot of heroin without the fun side.
But I kept myself together, looking at my kid. I’ve gotta be here when he’s 25, you know? And the bad part of it was twice as good come the end of it, if that makes sense. Getting rid of hep C, giving up needles, and my friends are so happy. And these are people I thought would never say anything nice about me because I’d been such a c—t to them when I was on speed and that. My whole personality has changed now that I’m not using speed and stuff. I’m not all grouchy, or going off because my head’s f—ked.
I didn’t want to give up on the treatment, though, because it wasn’t that bad, not compared to what other stuff I’ve been through. No point going through the bad stuff without sticking with it to get to the good, you know? I didn’t enjoy the part of sticking needles in my gut all the time, ‘cos I was trying to give up needles at the same time. But I got past that.
Now I’m not so tired I’m looking for work. I’ve never looked for work in my life before. I haven’t worked in maybe 10 years, but I’ve changed so much. It’s a bit hard because my arm’s not great. It went through a plate-glass window a while ago—I pushed open this glass door in the wrong place, really hard, and it broke. I cut my arm up all along there, cut a major artery, cut the finger tendons. The glass came down like a guillotine.
I might be 27 but I’ve fit a lot in. I could write an autobiography, get the other people who were there to tell their sides of it. I wouldn’t mind a quiet time now. I’ve started to draw again, which is good for me. I need something to occupy my brain. I hope telling my story helps out some other people out there.
Interview by James Morrison
How youpla can ged Hepatitis C?: Creating a resource for Torres Strait Islanders
Aboriginal Australians know how hard it can be to get hold of resources designed specifically for them: the weight of numbers means that almost everything is created for a ‘mainstream’ audience.
Torres Strait Islanders are in a double-bind, given that they make up a numerically small and geographically isolated subset of the greater Aboriginal population. There’s very little in the way of Torres Strait Islander-specific health information.
As one Torres Strait man said to preliminary researchers, “We haven’t had someone here with hepatitis to explain to us about what it does or what it can do.”
A Torres Strait woman agreed. “Because the community is very small and people are worried about their children’s future. It’s a big issue, because in Torres Strait we don’t have sickness like this before.”
However, a new resource has been created to help change that. Written in the common creole language of the Torres Strait Islands, the new pamphlet (pictured to the right) talks about HIV/AIDS and hepatitises A, B and C.
A clinical nurse consultant on Thursday Island, Yoko Nakata is thrilled with the publication. “This is the first time we were able to develop a resource that was purely for Torres Strait Islander people. I think it’s really important in trying to increase people’s knowledge and understanding about various types of illness.
“I think it’s really important that we continue to develop resources that are culturally appropriate so we can increase the people’s knowledge, awareness and understanding not only in sexual health, but in other areas as well.”
Unravelling the Mysteries of the Glycaemic Index
We take a look at the health benefits of a diet mirroring that of traditional Indigenous Australians.
There can be many benefits for those with chronic illnesses if they follow a low-glycaemic-index (low-GI) diet. Low-GI food, which is also high in fibre, releases energy in a slow and steady way, and this is beneficial for managing fatigue, one of the major symptoms of hepatitis C. A low-GI diet also has a raft of other benefits: controlling appetite, controlling cholesterol levels, and lower the risk of developing heart disease or type-II diabetes. Better weight control and control of arthritic conditions can be other benefits.
What is the glycaemic index? The glycaemic index (GI) is a tool for planning meals, and has been around for about 25 years. It is a scale that ranks carbohydrate-rich foods by the amount they raise blood-sugar levels. Foods that raise blood-sugar levels quickly and significantly have a higher GI rating than foods that release their carbohydrate sugars slowly. Generally, the lower the rating, the higher the quality of the carbohydrate.
To create the index, researchers fed their human subjects 50g of a particular carbohydrate food. Blood-sugar levels were taken and recorded over the following two hours. Each particular food is compared to the standard foods, which for GI are glucose sugar or white bread. These two GI villains rank 100 on the glycaemic scale. Below 55 is considered low, while 56-70 is moderate, and over 70 is high.
Eating a low-GI with a higher-GI food will lower the glycaemic effect of the higher-GI food. Fibre acts as a brake on the rate at which sugars enter the bloodstream. With fibrous food, there is a slow, even and steady release of energy for the body to use. Thus, eating stir-fried vegetables with white rice will lower the GI of the white rice because the vegetable fibre acts as a ‘brake’ on the body metabolising the carbohydrate sugars. Fibre is the key!
Most carbohydrates are converted to glucose in the body, although fruit sugars become fructose and dairy sugars become lactose. Insulin is excreted by the pancreas, and it moves the glucose not used for energy into the body’s cells to be stored as fat. High-GI foods create a rapid and potentially inflammatory rise in blood-sugar levels, which elicits an accompanying high insulin response. A diet that consists of mainly high-GI foods creates a high risk of developing type-II diabetes, as well as creating other health risks.
We need a hunter-gatherer diet! Humans were hunter-gatherers until only a few thousand years ago, and a hunter-gatherer diet is a low-GI diet. We are hard-wired to eat a diet of low-fat, high-protein foods such as meat, fish and high-fibre vegetables and fruits. Finding regular supplies of food was a real challenge for our ancestors. The body’s insulin response of storing excess sugar as fat was a reaction to the harsh reality that there could be very long gaps between substantial meals.
Bush tucker is low-GI. Vegetables and fruits that are gathered from the wild are almost all fibre-rich and have high-quality carbohydrates. In pre-agricultural human cultures, most carbohydrates were obtained from fruits and vegetables, while grains and other such carbohydrate-dense foods were rare. There was bread, no rice and no pasta. Fruits were small and packed with nutrients. Wild bananas, as an example, were about the size of a small finger.
This explains why our modern diet of highly processed foods, densely packed with carbohydrates and sugars, high in fat and low in fibre, is such a threat to the health of indigenous Australians. It explains why indigenous Australians are so vulnerable to developing diabetes—there are entire extended families of Aborigines who are diabetics.
Bush tucker is high in fibre, unprocessed and healthy, and that type of food is really what we all need to be eating.
Too much fruit juice can be toxic to the liver! Fructose—the sugar from fruit—can only be processed by the liver. A small half-glass of juice mixed with water may be fine for non-diabetics, but dietitians will line up to eagerly advise that it is much better to eat the whole fruit, since the fibre slows down the release of the fructose.
Dr Robert Lustig, Professor of Paediatric Endocrinology at the University of California, states that fructose is a hepatotoxin. He says that it is damaging, like alcohol but without the buzz. He states that we were never evolved to consume high quantities of fructose.
Lustig claims that in 1970, people were consuming 200g of fructose per year, but that by 2003 this had increased to 25kg. Fructose is added to some processed foods and drinks to sweeten them. It is also added to “sugarless” jams, and to cakes, breads and drinks. Dr Lustig states that high levels of fructose consumption can cause fatty liver, as well as liver inflammation and scarring.
To avoid fructose it is necessary to read labels very carefully. Food can be inaccurately labelled ‘sugar-free’ when it has, in fact, been sweetened with fructose. Disturbingly, this is often the case with foods which have a healthy image. It was once believed that such foods were particularly suitable for diabetics, but now this belief is being revised.
The glycaemic index is only one aspect of healthy eating. It is a big, complex subject, and to get dietary advice from a dietitian is well worth the trouble. I’ve always found their help and information to be invaluable in staying healthy. There is free access to dietitians at all major hospitals, and at the O’Brien Street Clinic in Adelaide (who can be rung on 8231 4026 to make an appointment).
Eve Doley
Further information:
The Zone. A dietary road map, by Dr Barry Sears (HarperCollins)
www.glycemicindex.com(run by Sydney University)
www.diabetes.ca (website of the Canadian Diabetes Association)
www.abc.net.au/healthreport (for links to a talk by Dr Lustig)
www.nutritiondata.com (for background information)
Will I Find a Partner?: Relationships & Hepatitis C
I am often asked how I met my partner by other people who have hepatitis C. They find it hard to disclose that they have the virus, and most people often live with this disease alone.
There seems to be quite a bit of fear in telling people that you have hepatitis C, but in my own experience I have found that it is a relief to tell others: I feel that being up-front in the beginning of a relationship makes all the difference.
It wasn’t until, one day, after taking my son to work, it hit home that maybe I would not have another partner. He came home that night and was telling me that his other workmates were enquiring as to who the ‘blonde’ was that dropped him off at work. He informed them that it was his mother, and they asked the normal question: “Does she have a partner?”
“No,” he replied.
“Why?” they asked.
“She has hepatitis C,” he said.
I was quite shocked to hear this: it gave me an insight into what my son was thinking.
I met my partner while I was working. We eventually became friends by just talking to each other, after a couple of months we decided to go out for dinner. I was quite nervous, as I had not been out on a date for years. I also believed that I would not meet anyone, or that no-one would want to be with someone who had hepatitis C. However, I was lonely and decided to give it a go.
We went to a nice restaurant, and started chatting about all manner of things. I asked him about his life, then he asked me about my life, and I told him the truth—that I had hepatitis C. He didn’t know anything about hepatitis C, and he asked many questions.
It was to my surprise that this man didn’t step back away from me. He was genuinely interested and wanted to know.
I had also prepared myself for the fact that if he didn’t want to see me again after I had told him, well, he wouldn’t ring back or be in touch. I was ready for this. I thought that if this happened, so be it—at least I was honest. I would have had to tell him eventually anyway, and keeping it from him would have been worse.
I had done quite a lot of research on hepatitis C, I had obtained pamphlets on the virus from the hospital and Hepatitis C Council—any information I could find—so that if anyone asked me about the virus I had it all there for them to read.
I gave these pamphlets to my partner to read the next time we met so that he could understand more about the virus. We met each other a couple of times a week, and then after a few months these meetings were more frequent. Eventually, I met his adult children and his parents, sister and brother.
At this time I was getting myself ready to go on the interferon/ribavirin treatment, and we decided not to tell his family about the hepatitis C, hoping that if I cleared the virus they would not need to ever be told.
However, I was on the treatment for 24 weeks, at the end of which the virus was undetectable, but after the six-month blood tests I had relapsed. My partner was very encouraging throughout the treatment, and was a fantastic support. This was a very difficult time in my life, and it’s another story I will share at a later time.
After another six months we decided to tell his adult children about the hepatitis C. They were quite concerned that their father was at risk, and feared that he may become infected. Once I informed them of all the facts about the disease they were alright: they also respected their father’s choices as long as he was happy. I told them that I had been up-front from the beginning of the relationship with their father, and that was the best thing that I could have said. They realised that I did not hide the fact that I had hepatitis C, and that I was honest from the start. I have a fantastic relationship with his children.
Recently my partner told me that it meant a lot to him that I confided in him about my hepatitis C on that first date, and that trust and respect was built from this in his eyes.
I chose to tell his adult children about the virus because there were times when I have been too tired or confused, depressed or in need of rest, and I had to cancel dinners with the family, and they often asked where I was or wondered why I wasn’t there. It became quite a chore hiding the fact that I had hepatitis C, given that the symptoms were such a big part of my life. I was always anxious before and during family get-togethers in case anyone asked me questions: it was assumed that I did nothing all day, didn’t work, and was healthy but lazy. My usual way out of this was to say I was busy helping my children, gardening, or doing housework, and then I would ask them a question to turn the conversation around back to them. This works: get other people talking about themselves to take the pressure off you. However, doing this repeatedly can become very boring and uninformative to the other persons involved, as if you are hiding something or are living a very mysterious life.
There is no reason to think that you may not meet anyone as a person with hepatitis C. There are people out there who are very understanding. Once told all the facts, their fear goes away and you earn their respect and trust. We need to educate the public about the disease to make life easier for ourselves, which is why I don’t hide the fact I have hepatitis C.
The more people that come out and talk honestly, explaining the facts, then the more understanding we will receive. Who knows? It may help reduce the stigma we are forced to live with at this time.
This is my experience with relationships and hepatitis C. It worked for me; it is my choice to be honest and up-front, but of course everyone has different circumstances which may prevent this from happening. Just don’t give up, and don’t think you have to live with this disease alone—there is someone out there for you to share your life with.
Linda
Circles of Information
Creating circles of information that grow. That’s how Garda White sees her work with students at the Berri TAFE campus. Garda, the coordinating lecturer in the Community Services and Health Program at Riverland TAFE SA, takes great pride in the growth of her students, who are all working towards a Diploma of Community Welfare.
“My students get a lot out of the hepatitis C workshops which they do as part of the Orientation to Alcohol and Other Drugs unit,” she said. “The workshops provide them with accurate information that they had not been aware of before.”
Garda said her students, like everyone else, come with all the myths about hepatitis C. “There is without fail a big increase in the level of knowledge about hepatitis C,” she said.
“Breaking down the myths was an important part of their learning. One of the most common responses from students was their surprise at how many of their previous beliefs about hepatitis C were mistaken,” she added.
“Many had been able to pass their newly acquired knowledge on to family and friends, use it to provide support and even correct misinformation at workplaces,” Garda revealed. “Although they are just a few individuals, the circles of information around them grow and spread.”
Garda said while the students may not go on to work in the Alcohol and Other Drugs sector, even in other areas they encounter clients who present with alcohol- and drug-related problems.
“It is important that they have a broad, well-grounded understanding of these issues,” she said. “Without such a grasp of the broader issues, outcomes for their clients will be limited.”
The hepatitis C component of the Alcohol and Other Drugs unit had been running for four years with active support from Hepatitis C Council SA educator Leslie Wightman.
Fred’s Story (Part 1): A personal look at alternative therapies and treatment
Linda McInnes of the Australian Hepatitis C Support forums talked to Fred, a worker at the Council, about his experiences with hepatitis C.
Tell me about your first initial contact with hepatitis C.
I believe it was around 1982—although I didn’t know anything about hepatitis C back then, but I had broken up from a long-term relationship with a girlfriend and I had a new group of friends who, although lovely people, were experimenting with injecting drugs. I was at a bit of a low ebb in my life at the time—I guess I was depressed from the split-up of the relationship; I had been with her for 11 years. Yes, I experimented as well with injecting, and I believe that is where I became infected with hep C.
What was your genotype, and did you have any stage of fibrosis?
Yes. I was diagnosed in 1994, and in 1996 there was a trial happening at the Royal Adelaide Hospital with interferon monotherapy, and I had a PCR test then to determine my genotype and, fortunately, I had genotype 3. When I say fortunately, well, it responds better to treatment, but it does have some other complications like steatosis and insulin resistance, which can be more common with genotype 3. Although I had no steatosis, I did have some experience with insulin resistance, which would make me feel a bit nauseous and shaky when I ate carbohydrates and sugars without enhancing them with proteins.
Your had interferon monotherapy.
Yes I did monotherapy for six months, being genotype 3, and it was unsuccessful. I think my ALTs were always at an average of between 170 to 200 in those days, and in the first two months of treatment it went down to 15, I believe, and then in the third month of treatment they went back up again and there was still detectable virus at the end of treatment.
What health problems did you have during monotherapy?
For me it was mainly cognitive stuff: brain fog and just losing track of my thoughts in conversation with people.
You tried alternative therapies? And this was after treatment?
Yes. In ‘96 I moved up into the Adelaide Hills and actually got more involved with a group of friends that I used to have who were into alternative therapy for numerous things, really, but I gained a great deal of knowledge and experimented with quite a few.
What ones did you look into—was it colloidal silver?
Yes I tried colloidal silver for about eight months to kill the hep C.
Did you find that of any benefit?
There were benefits in the fact that I was actually using it to try kill the hep C virus, but I don’t think it has actually any power to do that. It did actually kill the herpes virus as I used to get about four cold sores a year on my lip. I haven’t had any cold sores for about six years. I get the occasional one, one every two years, I’d say.
Have you tried combucha tea?
Combucha tea, yes, I have, actually. I found that to be wonderful stuff—my sense of wellbeing was wonderful, very noticeable while taking combucha tea. I did that for about eight months also. I think you are only supposed to take one glass per day, and I used to like the taste so much that I used to have three or four. After about eight months my body just knew that it didn’t want it any more, although I still like the taste of it, and my friend makes it and I have a glass of an evening. Yes, I think it has wonderful properties.
[Note: It has since been discovered that combucha tea is hepatotoxic; consult a health care professional before taking this product.]
Have you used St Mary’s thistle?
Yes, I started using St Mary’s around that time, as well as the colloidal silver, and I think milk thistle does have some beneficial properties for people with hepatitis C in protecting the liver.
The next treatment you did was the combination treatment. When did you do this?
I did the combination treatment starting around July 2000, I think. It was after the Hepatitis C Council held a forum called ‘Should I go on treatment?’. The forum was facilitated by Greg Dore, one of Australia’s leading epidemiologists. Well, they used myself and another person as case studies, and they put our history up on the wall, and in my case, being genotype 3 and also being a relapser, Greg Dore said that my chances of success on the combination treatment would be around 80%. So I decided to give it a go.
Did you have any problems during treatment?
Yes, I don’t think you can say it’s a walk in the park for anybody on treatment really, but the main problem that I experienced was brain fog, feeling that your head was in a different space. Most of the time I would feel overwhelmed when people came to visit—mostly it would be well-wishers and people offering support, but when I had more than one person at my house at a time I found that really taxing, quite overwhelming, really, so it was that sort of brain stuff that I found the most difficult. Of course, there was lethargy and flu-like symptoms, and there was an itch for a short period, but it was the brain stuff, really.
What health problems do you have since finishing treatment?
At the end of treatment there seemed to be a lot of emotional numbness or a flat mood that I found took some time to lift after treatment. Even though I had cleared the virus the second time around, and people used to say to me, ‘You must be over the moon, Fred!’ and I’d say, ‘Yeah, I think so,’ I couldn’t really feel it. I just felt flat. Those things combined, I believe that took several years to completely lift, whereas now I think that my short-term memory is reasonably good. It was some time after treatment for that to come about.
Did you try any alternative therapies during this second treatment?
I probably reduced them. In the first two months I didn’t want to actually take anything other than the interferon/ribavirin. I just felt an obligation, because it’s so expensive to do the treatment, and I wanted it to work and I wanted to follow the specialist’s advice. But two months into it I introduced the St Mary’s thistle and a vitamin-B complex which I spoke to my specialist about, and he was fine with that.
What advice would you give anyone contemplating treatment?
It’s a very individual thing, and I believe its worth giving it a go even for the fact that it reduces inflammation in the liver. Some people believe that can last for a year or two. And there’s a better than fifty-fifty chance that you can be rid of the virus. Even though there are side-effects, they are temporary, so I believe it’s worth giving a go. I’ve spoken to a lot of people who have relapsed after treatment, and they are very anti-interferon, but I wonder if they would feel the same if they had achieved a sustained response.
Which alternative therapies are you using now?
I would probably use more if I could afford them, but I stick mainly with a vitamin B complex and I take a thing called DMAE—it’s an amino acid that helps with brain functions. I take that daily with a multivitamin, and I also supplement with a natural testosterone cream which also helps with the cognitive functions and improves my stamina a bit.
What can you tell us about 5-Hydroxy Tryptophan and your experience with it?
I found it very helpful, actually, because I believe that even though I have cleared the virus, for maybe even six years there was a lingering low-level depression from the treatment that persisted, so I took 5HTP for about 18 months. I can’t afford to take it any more. I don’t seem to need it now, but it was very helpful at the time.
Did you find that maintaining your health with alternative therapies to be quite costly?
Yes, I’m afraid so. With my volunteer work, I exist on Newstart benefits, which unfortunately doesn’t leave enough money for some costly alternative therapies that I would like to actually use.
For people that cannot afford therapies, are there any supplements or vitamins that you recommend they could start with to help maintain their liver?
Yes—probably not the liver so much, but I find a multi-B complex vitamin to be essential, I think, and it has helped me all the way through. If you can afford it, St Mary’s thistle has been proven in very large studies overseas.
It has now been six years since you cleared the virus. How are you feeling—do you still continue to see a health care specialist?
No, I’m feeling great these days. It’s like a different life, really, especially considering I have some friends who are some reasonably heavy drinkers on the weekends. I don’t visit them every weekend, but when I do, I tend to drink quite a few beers, and the difference now, compared to when I had hep C, is phenomenal. Before I would be in bed for a couple of days with fevers and stuff like that—the hangovers were shocking—but my life is a bit different now. There is quite a semblance of good health.
Next issue: Working with hep C
Investigating Narrative Technologies
Educators need to constantly update their communication skills in order to reach their learners.Keeping up with technology is part of that challenge. The Hepatitis C Council of SA and Relationships Australia (SA) (RASA) have collaborated under a work-based action learning project framework to ‘investigate narrative technologies’ to meet that challenge in part.
What does that mean? Consider this eloquent text by Kate McEwen at RASA:
Narrative technologies are about enabling people to tell their story.
We are investigating ways of using technology to tell stories in different ways.
Telling stories has long been known to help people see their life’s experiences not as problems but as parts of a story.
By using different technologies, stories can be stretched in many different ways.
In telling stories in different ways, we are also learning how to best use the technology.
In order to share our discoveries, we need to enable others to access the technology and claim it for themselves.
What will we do? The project involves research into the available digital storytelling programs, quality storytelling processes, ways in which to manage and share stories, and guidelines for confidentiality. We hope, at the end of the project, to have a set of pilot ‘tools’ for remote hepatitis C service providers like rural health care workers, community workers on the APY lands, and anyone else who needs to understand more about living with hepatitis C from a personal perspective.
Background: HCCSA educators have been working with the ‘C Stories’ digital storytelling initiative using PhotoStory 3 for a while now. Using this approach has enabled community to capture their hep C stories for others and at the same time protect their identity. HCCSA saw the opportunity to extend the C Stories value by asking how else can we use technology to tell hep C stories? and the project was born. Thanks go to the Australian Flexible Learning Framework for the Learnscope funding.
Interested in getting involved?
We need hep C service providers and community members to be part of a testing group. Remote workers may apply to be paid to attend a focus workshop in Oct/Nov as part of the project. We would love to hear from you.
Please call Nicci Parkin at HCCSA on 8362 8443 for more information.
Check out our blog at www.narratech.blogspot.com and check out our existing PhotoStories on the HCCSA website.
HCCSA Library News
We have now finished our stocktake, and are at present standardising all our data entry so that the system can run smoothly.
Borrowers are asked to help by returning their books on time, or to phone us and let us know if they need an extension.
We are still trying to trace some lost books, so if you find you have any ‘orphans’ hidden away, please return them to the plastic box in the library so that we can check them in. Please don’t just put them back on the shelf!
New Books recently added to our collection:
- Brain Longevity by Dr. Singh
- Things you Can Change and Things you Can’t, Learned Optimism by Martin Seliman
- Feel the Fear and Do It Anyway by Susan Jeffers
- The Mind Body Connection – Therapeutic by Ian Gawler
- The Healing Power of Human by Allen Klein
- The Dance of Anger – A Woman’s Guide by Harriet Gold Lerner
Brain Longevity by Dharma Singh Khalsa, M.D.
This book is a very interesting and informative read for anyone who wants to know more about age-related loss of memory and other mental malfunctions. It is divided into three parts:
- The Discovery of Brain Longevity Therapy
- How the Brain Works
- Designing your Own Brain Longevity Program
I found the section on How the Brain Works particularly interesting. This part gives a brief tour of the brain and describes how the memory works, and also discusses the difference between age-related memory loss and Alzheimer’s disease. I don’t know about you, but I get a bit worried sometimes!
The third section discusses key nutrients and natural tonics for peak mental performance, and how physical and mind exercises can go a long way towards brain regeneration.
Good reading.
Judy Campbell
A Positive Birthday
Happy Birthday to our positive speakers!
No, they don’t all coincidentally share a birthday, but they all graduated this time last year from the ‘refreshed’ C Talk program training course. Since then, 9 of the original 11 graduates have continued to provide ‘positive’ stories from their personal experiences of hepatitis C to conferences, workshops, seminars, education sessions and the media.
Their stories are wellsprings of wisdom and resilience. Congratulations, and a big thank-you to all the ‘C Talkers’ on the standard of their presentations: for being reliable, for being continuous learners, for having a laugh, and for contributing to the energy and reach of the education program at HCCSA.
And a special thanks to Wayne for his never-ending supply of Riverland mandarins and oranges. Yum!
