#14 Hep C Community News

HEP C COMMUNITY NEWS SPRING 2000

ISSUE 14

Our New Home

4 The Parade Norwood 1

Hep C Community News

Issue 13

1

Hepatitis C Council SA Inc 4 The Parade Norwood.

IN THIS ISSUE Education Reports

3 4-5

Treatment & Trials Report News in Brief

6

Aushep 8 Diary

7

Why Support Groups ?

Postal Address Hep C Community News PO Box 782 Kent Town SA 5071

7 & 14

From Doug’s Desk

8-9

Cirrhosis Info sheet

10 -11

National Strategy

12

Symptoms Survey

12

Hyperinsulinaemia

12 -13

What’s on Resource & Additional Service Guide

Newsletter Team

PH. (08) 8362 8443 Fax. (08) 8362 8559 Email: hepcsa@senet.com.au Web site: www.hepccouncilsa.asn.au

15

Calendar Dates

16

Adelaide Support Group/ Managing Symptoms

4th Oct

Doug Mellors

AGM

4th Oct

Fred

Newly Diagnosed Information

12th Oct

Sharon

Office Warming

13th Oct

Editor: Deborah Warneke

Proof reading: Kerry Paterson

Peer Telephone Training

17th 18th 19th Oct

We welcome contributions from Council members and the general public.

Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

2

Hep C Community News

Issue 13

2

RURAL REPORT Rural education and community development have continued with seminars, group, and individual training sessions in Port Lincoln, Coober Pedy, Oodnadatta, Whyalla, Port Augusta, and Cadell Training Centre.

The client base has been broad including nurses, environmental officers, doctors, social workers and students, youth workers, drug and alcohol workers, prisoners, and prison workers, as well as indigenous and general community members.

Major Brian Watters, chairman of the Australian National Council on Drugs, was present on the Coober Pedy trip and was very interested to learn more about hepatitis C. Further sessions are currently booked for Roxby Downs, Coober Pedy, Port Augusta, and Port Lincoln.

The rural education officer, William Donohue, can be contacted on (08) 8362 8443 for health professionals, or 1800 02 11 33 for people affected by hepatitis C, to arrange sessions.

SOUTH AUSSIES SHINE IN BRISBANE Hepatitis C Educators Workshop – Brisbane June 2000 The 2nd National Hepatitis C Educators Conference was held in Brisbane this year and four workers from HCCSA attended. The conference featured key notes speakers such as Greg Dore giving an update on current treatments, Annie Madden on drug law reform issues and Cindy Shannon from the University of QLD spoke about indigenous communities affected by hepatitis C. Iain Henderson from COPE and myself presented our own workshop on the Positive Speakers Forum.

Currently no other Hepatitis C Councils in Australia are utilising people living with hep C as educators.

The Hepatitis C Council of NSW, since attending our workshop, is interested in setting up their own positive speakers’ forum. The Council produced a video called ‘People Like Us’ which featured speakers from the forum telling their stories about the power of talking to the community about living with hepatitis C and how it helps to breakdown stereotypes and discrimination experienced by people affected by hepatitis C. Another brilliant workshop presented in Brisbane was by Alan Yale, the Hepatitis C Prevention Officer from DASC. Alan presented his Safe Injecting Game which was very well received and I have to say the most beneficial workshop I attended whilst I was there.

A highlight of the conference was the launching of the 1st National Strategy on Hepatitis C. Other highlights were the weather (stunning), the food and the people.

Personally, I had a great time and this conference was definitely an improvement on the last one.

There was a greater sense of people working together from all the various groups which included the Haemophilia Foundation, user groups, government and Hepatitis C Councils.

Vanessa Behne Education Officer

3

Hep C Community News

Issue 13

3

Hepatitis C Treatment &

Trials Seminar

Professor Burrell supported combination therapy as the initial treatment of choice.

The seminar was held at Wakefield Hospital on 3rd August 2000. Professor Chris Burrell, Head of Microbiology-University of Adelaide, Dr Hugh Harley, Head of Clinical Hepatology Royal Adel. Hospital, and Jacqui Richmond, Victorian Hepatitis C Educator - based at St Vincent’s Hospital gave presentations. These were followed by a panel discussion where Kerry Paterson, Co-ordinator Hepatitis C Council of SA, Leanne Faraguna, Clinical Trial Co-ordinator-Royal Adel. Hospital and Associate Professor David Gordon, Director of Microbiology and Infectious Diseases - Flinders Medical Centre joined the presenters.

Dr Robert Hall, Director of the Communicable Diseases Control Branch, Department of Human Services, chaired the meeting.

Professor Burrell gave an overview of the treatments in Australia. He presented information on the current debate of who will benefit most from treatments at this time, given what has been learnt about the natural history of Hep C. Cirrhosis is occurring in 5%-10% of people infected with HCV after 20 years and 15%-20% after 40 years. Progression is faster in males, those infected when they are over 40 years of age, those with heavy alcohol intake, consistently elevated ALT levels, obesity, or co-infection with HIV/HBV.

4

Current Aushep 8 trials are indicating that combination therapy with interferon/ribavirin is producing a sustained response in approximately 40% of people overall. This response rate is higher in those with genotype 2 and 3, and those with low viral load. Importantly, sustained response is associated over time, with reduction in the extent of liver fibrosis. This means that successful treatment will not only prevent progression of cirrhosis, but may also lead to improvement in pre-treatment liver function.

Future developments look to improvements in the use of interferon and ribavirin, with better access and better selection of people who will gain most benefit from treatment. Newer interferons being investigated include consensus and pegylated interferon. Other potential treatments are nucleoside analogues, protease, helicase, and polymerase inhibitors, and cytokines (e.g. IL-10).

A therapeutic vaccine remains elusive at present.

Dr Hugh Harley spoke about the Aushep 8 trials of combination therapy. He began by raising the question of who does not need to be treated. 80% of people who become infected with HCV will not develop significant liver disease. It is important that these people are identified so they are not given unnecessary treatment, which may have debilitating or dangerous side effects.

Dr Harley described pegylated interferon, where interferon is chemically bound to polyethylene- glycol. This increases the length of time each injection remains active in the body as well as providing a more constant level of interferon.

Injections will be able to be given once a week.

However, there may be added side effects, including elevated ALT levels that could make the assessment of treatment difficult.

Dr Harley also discussed costs of treatments.

Interferon monotherapy costs $1900 for 6 mths; ribavirin costs $10,000 for 6 months. The cost of liver transplantation for end stage liver disease was estimated at $100,000.

Hep C Community News

Issue 13

4

Jacqui Richmond related the Victorian situation. Victoria has established seven metropolitan treatment centres in Melbourne. Five rural and regional treatment centres have also been established. All centres are providing combination therapy (interferon + ribavirin). A “shared care” protocol has been adopted. People requiring treatment are seen at the hospital for assessment and commencement of treatment. They are then followed up by their local doctor with reviews by the hospital at set times or if there are problems.

Kerry Paterson presented an account of one person’s recent experience with combination therapy and the impact it had in her life. People on treatment can require intensive personal and community support.

Jacqui Richmond felt there are some problems with the shared care system. The majority of general practitioners are not skilled in treating HCV. There is a low level of knowledge and a lack of clinical experience.

Associate Professor David Gordon pointed out that combination therapy is currently available in South Australia through compassionate access. It will not be widely available until the approval process has been completed, at this time thought to be mid 2001.

The establishment of treatment centres in Victoria has been limited by lack of funds and support for nurse specialists/consultants. Drug companies have been funding some positions as part of the Aushep trials.

Although some treatment centres have been established in rural Victoria, Jacqui Richmond still sees geographic distance as a major barrier to medical treatment.

Following the three presentations, the other members of the panel spoke briefly.

Leanne Faraguna discussed her role in treatment, including practical education and co-ordination of the supply of medication. She is also the first port of call to discuss problems, complications, or side effects from the treatment.

Questions were taken from the audience throughout the evening. There was stimulating discussion between the medical and community perspectives on the questions raised by current improvements in Hep C treatments.

The Council would like to thank all speakers for their informative presentations on the night, and we would particularly like to thank the Department of Human Services for their sponsorship and support in organising the seminar.

Speakers from left: Prof. Chris Burrell, Jacqui Richmond, Dr Hugh Harley, Assoc. Prof. David Gordon, Dr Robert Hall and Kerry Paterson

5

Hep C Community News

Issue 13

5

News in Brief Treating Hepatitis C With Combination Therapy Benefits Patients Co-Infected With HIV A new clinical study has found that the leading hepatitis C treatment is effective in patients co-infected with HIV, does not interfere with HIV medications, and may even make it possible for more HIV patients to be treated, according to researchers.

In the study, researchers evaluated the effect of standard combination therapy for HCV, interferon with ribavirin, in patients with HIV and HCV. A second group of patients received alpha interferon monotherapy for the first three months, followed by combination therapy for the rest of the trial. All patients also received a mixture of HIV therapies.

After three months, patients receiving alpha interferon monotherapy for HCV saw no change in HCV or HIV viral loads. In patients receiving the combination of interferon and ribavirin, however, the median HCV viral levels decreased from 325,000 copies viral RNA per millilitre (ml) of blood plasma to undetectable levels (less than 1000 copies/ml). Median HIV RNA levels remained at less than detectable levels (less than 400 copies/ml).

At 12 months, the original alpha interferon monotherapy group saw its median HCV RNA level decrease from 435,000 to 98,000 copies/ml plasma, and its HIV RNA to less than 400 copies/ml. For the group that received combination HCV therapy from the beginning of the study, the median viral load for both HCV and HIV was undetectable at 12 months.

Study results also show that ribavirin, part of the combination therapy for hepatitis C, does not interfere with the action of leading HIV treatments AZT or D4T. HIV viral loads remained under control with ribavirin present in the body.

The most common side effect seen with ribavirin was anemia, which was effectively treated with erythropoieten therapy in most cases. ``Some of the best HIV treatments cause liver toxicity as a side effect, which can force us to stop using them if the liver is also under attack from hepatitis C,'' Dr. Dieterich said. ``This study

6

showed the added benefit of effective treatment for hepatitis C in co-infected patients, because by lowering liver toxicity, it allows us to continue treating for AIDS,'' he said.

SOURCE: Cabrini Medical Center

E U Approves Pegintron (Pegylated-interferon Alfa-2b) For Hepatitis C Schering-Plough Corporation announced that the European Union's (EU) Commission of the European Communities has granted marketing authorization to Pegintron™ (peginterferon alfa2b) as once-weekly monotherapy for the treatment of adult patients with chronic hepatitis C. Pegintron is the first pegylated interferon approved for marketing in the world.

In clinical studies, once-weekly administration of Pegintron has been shown to be twice as active and just as well tolerated as Intron A (interferon alfa-2b), administered three times weekly as monotherapy for hepatitis C. Pegintron is indicated as monotherapy in case of intolerance or contraindication to ribavirin for the treatment of adult patients with histologically proven chronic hepatitis C. The approved labelling in the EU for Pegintron indicates that the optimal treatment for chronic hepatitis C is considered to be the administration of a combination of interferon alfa-2b with ribavirin. The safety and efficacy of the combination of Pegintron and ribavirin has not yet been documented.

Pegintron monotherapy is administered once weekly for at least six months. In patients showing loss of HCV-RNA at six months, treatment is continued for an additional six months, i.e. for a total course of treatment of one year.

In the U.S, Schering-Plough are seeking marketing approval for Pegintron as monotherapy for the treatment of chronic hepatitis C • Abridged

Schering–Plough press release

View the original PR at http.www.scheringplough.com

Hep C Community News

Issue 13

ings. It took a bit at first to do it, starting with a couple of days a week and building to every day, but now I think I am really benefiting from it, and so is the dog! I have always continued to work and I am finally not feeling like I need to find a spot to lie down in the afternoon and catch a few winks. It feels great to get through the day without wanting to nod off.

Aushep8 Diary #5 In my last entry for the newsletter I had recently dropped back on my dose of interferon due to the emotional side effects I was experiencing. Dropping back the dose did work for a month or two but then the depression came back, only this time I think it was even more debilitating. I knew I couldn’t continue with the treatment feeling like that, it was time to give it away.

Feeling firm in my decision I contacted the trial coordinator and told her I couldn’t go on.

I guess I felt a little like I had failed, quitting early, but the people at the hospital were really supportive of my decision. They all said I had done really well to have lasted as long as I did. I completed 41 of the 52 weeks of the trial so my chances of having a sustained response are still pretty good. I was testing PCR negative from about 4 weeks into the trial so I’m still confident that I could have cleared the virus.

Towards the end of my time on treatment I began to feel like I would never be able to experience being happy again, the depression just takes away any ability to reach that natural high.

By the end of the first week off the treatment I felt happy for the first time since I began the treatment. I knew then that things could only get better from here. It’s now been about two months since I stopped the treatment and I haven’t had a miraculous recovery from it. I guess as with everything it takes time, time to clear it all out of your system. But as they say ‘it won’t happen overnight but it will happen!’

My mental clarity is getting better too, in fact I noticed an improvement by the end of the first week, and it’s given me more confidence in my work. The depression is going too. It is not gone yet and I still find myself susceptible to getting upset over insignificant things but it is getting better. All I really have wanted all along was to be able to enjoy life again and now it’s becoming my reality.

Heidi

Why Support Groups ?

I have been attending support groups for about 2½ years now. I find them invaluable for the support and camaraderie that one gets from being with others who also have the virus.

Initially I must admit that I was sceptical that such a thing was my cup of tea so to speak, I think the name support group put me off somewhat but I found that I was quite surprised to learn that they can be a fun get together as well as a great source of information.

I don’t go to all the support groups, just the ones that interest me. I learn something new every time.

Over the last couple of months I’m finding my energy levels slowly improving. I recently moved to a share house with a dog and, deciding we both needed to improve our fitness, have taken to walking him up to the park in the morn-

Hep C Community News

Why Support Groups is continued on page 14

Issue 13

7

From

less achieved stabilisation of infection rates in the main affected groups, and so far minimised the spread to other populations.

Doug’s Desk

What were the elements of success underpinning the Australian response to HIV ? According to Wodak & Crofts (1996) the initial response came from immunologists and haematologists who were extremely effective public health practitioners. The HIV response also had an independent task force that was able to exert pressure on commonwealth and state health services. In addition to this both the AIDS task force and NACAIDS were chaired by high profile figures with whom people in the general community could identify.

“Doctors are people who prescribe medications, of whose effects little are known, to patients about whom they know even less.” (Anonymous)

By contrast Wodak & Crofts note that the response to the HCV epidemic has mostly depended upon the efforts of a small group of hepatologists who lack the broad focus of their HIV counterparts. They also claim that the general public are not so fearful of hepatitis C as they were of HIV which was perceived by Australians generally to be an imminent threat to public health requiring quick and decisive action.

They claim that it is hard to get public advocacy for an illness like HCV which is linked in the minds of the general public with injecting drug use, an illegal and widely condemned behaviour.

This epigram has always been attributed to Voltaire who didn’t think much of doctors but loved gardeners. It contains two themes, the first questions the efficacy of treatments, the second questions the amount of knowledge the doctor has about the patient. The Treatment Seminar organised by the Department of Human Services and the Hepatitis C Council on the 3rd of August (see William’s article pg 4) went someway towards addressing the first theme, but the latter until fairly recently, rarely gets a mention apart from occasional articles by Alex Wodak and Nick Crofts.

In this edition I would like to look at the make up of our affected community and our role in response to the HCV epidemic, and what we can learn from the Australian response to HIV. My aim is to encourage debate, not necessarily to provide answers.

For some years now both Alex Wodak and Nick Crofts have been writing articles drawing attention to particular problems experienced by some of the groups which comprise the general hepatitis C community, and like most people looking for answers to difficult problems they have sought models of success from other areas of health. The most obvious model of relative success has undoubtedly been Australia’s response to the HIV epidemic, that has more or

8

The article mentioned above was published four years ago and its main thrust was a call to reframe the HCV epidemic as a public health issue as opposed to a clinical one with the public health association providing the leadership.

Needless to say these issues are still with us, as is evidenced by a recent article by Crofts, Loveday & Kaldor (1999) drawing attention to much the same issues and this is despite the recent launching of the First National Hepatitis C Strategy.

“Similarities between the two epidemics include the targeting of some of the most vulnerable and politically disenfranchised groups, raising issues of discrimination, resource allocation and priorities for effective action. To most in the community, hepatitis C is a disease of other people, requiring no action for their own protection. The people who are affected are often socially stigmatised. There is no immediate political constituency for the major groups affected by hepatitis C, injecting drug users and

Hep C Community News

Issue 13

8

prisoners, so generating the political will to combat transmission is difficult.” (Crofts, Loveday & Kaldor, 1999).

So according to Crofts et al, it would seem after a decade that we cannot rely on the altruism of medical specialists and government officials to provide the political will to do more about this epidemic and that the communities affected by hepatitis C are too stigmatised and fragmented to have any political clout. While I would generally agree with the above analysis, I think one of the major differences between the two epidemics is that the gay community had recent political experience and skills, acquired by fighting for a set of shared social, political and cultural aspirations. I am not inferring the “gay community” is one homogenous community without variations, as it most obviously is not but for the purpose of combating a common threat they showed an exemplary solidarity. When their community was threatened they closed ranks, got angry and political, made sure they were noticed and supported and cared for each other. By comparison what they have and what we lack is a sense of community.

Ten years after the discovery of this virus we have hepatitis C councils in most state capitals with small groups of volunteers involved mostly in the dissemination of information. In addition to that we have people who attend support groups - in those states which have them. In Adelaide we have one of the largest (probably the largest) group of volunteers in Australia, this group has doubled in the last two years but is still small and does not include all of the “at risk” groups. If we add the number of volunteers to the average attendance figures at support groups our community would make up approximately 1% of the total number of people living with hepatitis C in this state - hardly a representative community either in number or make up. So, when the commonwealth government produces a National Hepatitis C Strategy that calls for “partnerships” with the hepatitis C community I seriously wonder who they mean.

If we are to do justice to this Strategy we will have to grow in size and include those groups who as yet have no face and no voice within our small community otherwise our progress will be painfully slow - as it has been for the last decade.

9

Some possible strategies that we may pursue have been suggested in a recent article by Goddard (2000), they have been listed below with some additional suggestions from people in the Adelaide community : •

The development of educational campaigns by the Australian Hepatitis Council funded by drug companies rather than government (Goddard, 2000).

•

Expansion of counselling services within hepatitis C councils (Goddard, 2000).

•

Community organisations should take on an activist role (Goddard, 2000).

•

That Councils take on service provision beyond information services, provided by and for people with hepatitis C people.

•

That we increase our visibility e.g. through the media, information stalls in shopping malls, rock concerts, festivals and benefits.

•

That we create more links with other communities by being willing to embrace and respect our differences.

Will this work? I hope so, but it would be nice to hear from you the readers, with suggestions regarding these issues. So, please forget your gardens for the moment and drop us a line or email. My next newsletter in November will be my last.

Doug Mellors.

References Crofts, N., Loveday, S., & Kaldor, J. (1999).

The meaning of hepatitis C for the community.

Australian Family Physician, 28, 60-63.

Goddard, M. (2000). A (modest) leap forward.

Australian Hepatitis Chronicle, 5, 5-9.

Wodak, A., & Crofts, N. (1996). Reinventing hepatitis C: from interferon deficiency to control.

Australian and New Zealand Journal of Public Health, 20, 231-232.

Hep C Community News

Issue 13

9

Cirrhosis The following is an extract from the new Cirrhosis Fact Sheet. A full copy is now available from the Hepatitis C Council of SA Inc. The biggest fear for many people with hepatitis C is that they may develop cirrhosis. Upon diagnosis of cirrhosis, people are often shocked and ill prepared to deal with this news. Sometimes they are sent away with little information and no support. For many people this is a time of considerable confusion and fear. Many people feel that they have little hope of continuing to live the life they wish to.

It is important to remember that according to various reports, considerable numbers of patients with hepatitis C related cirrhosis were still without signs of end stage liver disease 10-15 years after their initial diagnosis. Although liver function is compromised in what is known as compensated cirrhosis (where the liver still manages to compensate for the damage occurring) it is still adequate to sustain a fairly normal life. Cirrhosis may remain stable for many years or indefinitely.

What is Cirrhosis?

When chronic disease causes the liver to become permanently injured and scarred, the condition is called cirrhosis.

Cirrhosis occurs when the normal “architecture� of the liver is lost because of the build up of fibrous (scar) tissue within the liver, as a result of ongoing inflammation. The fibrosis surrounds nodules of regenerating (new) liver cells which are unable to arrange themselves properly because the local pattern of liver organisation has been destroyed by the disease process.

What happens in the liver when cirrhosis is present?

As outlined above, the ongoing process of damage, regeneration and scarring which results from chronic hepatitis, may become severe enough to restrict the flow of blood through the organ causing back-pressure down the system.

In addition, as damage progresses, there may be too few liver cells to perform the metabolic work that the body needs.

10

The main blood flow to the liver comes from the intestines and carries the nutrients from food that has been digested there. This blood vessel is called the Portal Vein. An artery (the Hepatic Artery) also flows into the liver and carries blood rich in oxygen for the liver cells to use. As these two blood vessels enter the liver they divide up into smaller and smaller branches. The smallest component of the liver (a liver lobule) receives tiny branches of these two main sources of blood.

Blood flows from these vessels and flows around the liver cells so the cells can process nutrients, make bile, get rid of toxins, make proteins and other things essential to health. After the blood has passed around the liver cells, it collects in the centre of each lobule and flows into the hepatic vein and travels back to the heart.

The loss of normal liver tissue slows the processing of nutrients, hormones, drugs and toxins by the liver. Also slowed is the production of proteins and other substances made by the liver.

What are common symptoms associated with cirrhosis?

It appears that many people with cirrhosis experience no obvious symptoms (no different from those associated with hepatitis C) at first, and some of these people only become aware of cirrhosis via a liver biopsy.

People with cirrhosis may experience fatigue, weakness and exhaustion, tenderness or pain in the liver area. Loss of appetite is usual, often with nausea and weight loss. Other symptoms may include impotence, loss of sexual drive and enlarged breasts (in men). Some women may experience menstrual abnormalities.

Are some people with hepatitis C more at risk of getting cirrhosis than others?

A recent article on cirrhosis and the liver by Geoffrey McCaughan and Graeme Macdonald in the Australian Family Physician Journal identified the following factors that appear to predispose people to hepatitis C related cirrhosis:

Hep C Community News

Age (>40 years) at acquisition of Hepatitis C Male gender Duration of hepatitis C infection Hazardous alcohol intake (>4 standard drinks per day for men/>2 per day for women) Failure to respond to interferon therapy

Issue 13

10

Testing for Cirrhosis and monitoring for the development of liver failure Many people find out that they have cirrhosis via a liver biopsy. People suspected of having cirrhosis will not always be referred for liver biopsy because their blood tests may show an increased risk of bleeding. Other findings that may point to the presence of cirrhosis, or liver failure on clinical examination and investigation are: • low

albumin (transport protein which also keeps fluid in vascular system) • high INR (INR assesses coagulation) anything more than a slight elevation suggests liver failure • low platelets (related to clotting of blood) significant decrease may indicate portal hypertension and enlarged spleen • elevated bilirubin (yellow pigment of bile formed from the breakdown of haemoglobin in red blood cells) • ultrasound – may indicate portal hypertension and enlarged spleen (adapted from AFP 1999:28 special issue p47)

Symptoms associated with progression The person may notice increasing lethargy and malaise. Appetite is reduced and there may be nausea and vomiting. People may notice swelling of the legs (oedema) and abdomen (ascites) as fluid leaks out of blood vessels because the liver is not making enough albumin. Muscles of the arms and legs tend to waste. Bruising is a common and significant finding as it suggests that the liver is unable to produce enough clotting proteins and this is exacerbated by a low platelet count. Bleeding may occur in the gut and this may be life threatening. The back pressure resulting from impaired blood flow through the liver is called `portal hypertension`. It can cause enlargement and weakening of the blood vessels at the base of the gullet (oesophagus) and top of the stomach which are known as `oesophageal varices`. They can rupture and cause catastrophic haemorrhage. The immune system does not function well as the liver deteriorates and infections can occur.

Treatment The treatment of hepatitis C related cirrhosis with interferon or interferon plus ribavirin is a controversial subject. At present, having cirrhosis excludes previously untreated (treatment naïve)

11

people from interferon therapy under Section 100 guidelines, although these may soon be changing.

Overall people with cirrhosis are only half as likely to respond to treatment, but they are the patient group most likely to benefit if a sustained response to therapy is achieved. This is because of the reduced risk of cirrhosis related complications, for example liver cancer.

People with cirrhosis will need to be monitored very closely whilst on treatment. Monitoring of levels of platelets, haemoglobin and white blood cells is essential as they may drop during treatment.

Where do I go from here?

Cirrhosis can’t be reversed so management is focused on halting further damage to the liver, treating complications and screening for liver cancer (hepatocellular carcinoma - HCC).

It is recommended that people with cirrhosis be screened for HCC six monthly. The current protocol consists of a blood test for alphafetoprotein (a tumour marker) six monthly and yearly liver ultrasound which looks for tumours.

Does diet make a difference?

A balanced diet, high in protein and carbohydrates, low sodium (salt) can be an important part of managing cirrhosis; vitamin and mineral supplements may also be of use if deficient.

Fresh fruits and vegetables are rich sources of antioxidants, which are important for cell regeneration. Try to eat at least 3 different coloured fruits or vegetables each meal.

A number of people with cirrhosis tolerate fats poorly. If you are experiencing a loss of appetite, try eating smaller more frequent meals throughout the day.

High protein foods are essential to keep up kilojoules and avoid muscle wasting. Try to include these in every meal. This is easier by varying your sources of protein between lean meat, chicken, fish, low fat dairy products, eggs, nuts, seeds, pulses and legumes (eg peas, beans, lentils etc). Textured vegetable protein products and calcium supplemented soy products; such as milk, yoghurt and cheese are also good choices especially for vegetarians.

Hep C Community News

Issue 13

11

N A T I O N A L S T R A T E G Y

The 1st National Hepatitis C strategy was launched by the Commonwealth Government in Brisbane on the 29th June 2000.

The National Hepatitis C strategy is a world first in terms of a co-ordinated national response to hepatitis C. The Strategy outlines a five year plan to reduce the number of new infections Australia - wide and to support those already infected with the virus.

Copies can be obtained by contacting the Hepatitis C Council of SA.

Hepatitis C Symptoms Phone-In Extended

Until the end of November

Monday– Friday 9am-5pm For anyone with symptoms they associate with being Hep C positive.

Contact Leslie, Cathi or Sabine on 8362 8443 or 1800 02 11 33 for country callers

12

Hyperinsulinaemia / Hypoglycaemia Being Hypoglycaemic myself or Hyperinsulinaemic as it is more often called these days, I have often wondered if it is linked to Hepatitis C. I suspect that it may be as I have been meeting more and more people with this condition who also have Hep C. Hyperinsulinaemia means more than the usual amount of insulin in the blood. It is due to an excessive secretion of insulin by the islet cells of the pancreas. It can cause a less than normal amount of glucose in the blood.

What it means to be Hyperinsulinaemic is mainly that one has to manage their blood sugar levels so that they don’t drop too low, which then causes a “glycaemic crash”. When this happens, one experiences a nauseous feeling and the legs feel shaky and weak. If it isn’t managed properly, it can lead to more serious problems.

The condition may cause weakness, headache, hunger, visual disturbances, perspiration, ataxia, anxiety, personality changes, and, if untreated may lead to delirium, and perhaps coma. The treatment is the administration of glucose in orange juice (or other fluids) by mouth if the person is conscious or in an intravenous glucose solution if the person is unconscious. Glycogen or complex carbohydrates may also be given.

You can avoid these awful symptoms (and they can be awful - it’s as though the body just shuts down) by regulating your sugar levels. A simple management of making sure that you balance your meals to ensure that you eat more proteins and reduce your carbohydrates (which mostly convert to sugar in the body).

Some people also take chromium tablets as they aid in glucose metabolism and regulate blood sugars. Taking a high protein supplement such as albumin powder can be a good idea also. A friend is also prescribed a medication by his GP called “Novonorm”, which taken before meals, helps to regulate the blood sugars I have been given a list of foods that another friend got from his doctor, (which I think originally came from the internet). This is a list of foods that should only be eaten at certain times of the day.

I suspect that by eating some of these foods later in the day may be a contributing factor in the night sweats.

Hep C Community News

Issue 13

12

GLYCAEMIC INDEX OF CARBOHYDRATES Can have these foods once a day for breakfast only Eat less of these foods below and try to avoid them at other times.

Glycaemic index greater than 100% (rapid inducers of insulin) Grain-based foods: Simple sugars: Snacks:

kidney beans (canned),Puffed rice, wheat biscuits, rice, bread, puffed wheat, millet, potato.

Maltose honey, raw sugar, glucose, jam.

Tofu, ice-cream, puffed rice cakes.

Glycaemic index standard=100% Bread Glycaemic index between 80 and 100%

Grain-based foods: Fruits: Snacks:

Grapenuts, whole-wheat bread, oatbran, brown rice, muesli, shredded wheat, vegetables, parsnips, corn, carrots (1 glass of carrot juice in the morning is acceptable) Banana, raisins, papaya, mango.

(From 100% natural ingredients) Ice cream, corn chips, rye crisps, jelly, carob chocolate, sao biscuits, jatz biscuits, milo.

Foods you can have twice a day say for breakfast and lunch Glycaemic index between 50 and 80% (moderate inducers of insulin) Grain-based foods: Fruits: Vegetables: Simple sugars: Snacks:

Spaghetti (white), spaghetti (whole-wheat preferable), pasta, pumpernickel bread, all-bran cereal, porridge/oats, whole-meal scone.

Orange, orange juice (2 glasses a day is acceptable), apricots, pineapple, dried fruits/ prunes/sultanas.

Pinto beans, baked beans, navy beans.

Lactose, sucrose.

Fruit and/or nut bar (made from 100% natural ingredients)*, potato chips (microwaved, grilled or lightly pan fried in olive oil, no deep frying)*, wholemeal salada, organic low fat yoghurt, custard.

Foods you can eat the whole day long for all three meals Glycaemic index between 30 and 50% (reduced insulin secretion) Grain-based foods: Fruits: Vegetables:

Dairy products: Fruits: Simple sugars: Snacks:

Barley, oatmeal (slow cooking), whole-grain rye bread.

Apple, apple juice, apple sauce, pears, grapes, peaches, tomato/soup, lemon juice.

Kidney beans/dried, lentils, black-eyed peas, chick peas, soy beans, lima beans, shallots, asparagus, bean sprouts, cabbage, beetroot, carrots, capsicum, cauliflower, lettuce, broccoli, turnips, pumpkin, onions, green beans, choko, celery, cucumber, garlic, zucchini, mushrooms, spinach, gherkins, rhubarb, radishes, brussel sprouts, vinegar.

Milk (100% natural pasteurised not homogenised), yoghurt.

Cherries, plums, grapefruit.

Fructose Raw mixed nuts, Mixed wild berries. *Do not consume genetically modified foods as their safety is not proven

I hope this list may be of value to someone.

13

Hep C Community News

Fred

Issue 13

13

Why Support Groups ?

I first attended support groups in the late 80’s, and that was narcotics anonymous. I found this very helpful at the time, because of my addiction to drugs. Although my attendance at NA was part of the program at the Woolshed, I wasn’t keen about going along, but as time went by, I found the support group more and more beneficial. Looking back on that experience I saw the positives connected to the support group environment. So my time spent at these groups was very worth while.

“A Support Group! That’s the last thing I need. A room full of basket weaving depressed people all muttering doom and gloom. Thanks, but no thanks.” This was my opinion of support groups and I made no secret of it.

Then I heard from a friend about a talk on Chinese herbal medicine she had attended.

I was very interested and asked why she didn’t tell me she was going. With a smile, my words were quickly thrown back at me, ‘a room full of …………’.

These days I am involved with the support groups run by the Hepatitis C Council, and my involvement with these groups has its benefits. It has not only been the information that I have gained from attending these groups, but more importantly it has been the support, empathy and friendship, that I have gained so much from.

So my message to people living with Hep C. and to their friends, partners and families is to support these groups for the benefit of all.

Adelaide Support Group

Well, we live and learn. I’ve been to quite a few groups now and they’re nothing like I expected, (not a basket in sight). I’ve learned so much more about hep C than my Doctor ever had time to explain to me, as well as other ways of dealing with hep C in my life.

October 4th - early 6pm start November 1st Xmas break-up December 6th 6.30pm-8.30pm

I’d like to change the name from support, to INFORMATION groups.

Adelaide Central Mission 10 Pitt St Adelaide

Symptoms Support Group I didn’t go to Support Groups in the beginning because I didn’t think they were relevant to me. I didn’t have hepatitis C, and thought I would get enough information about it from my partner who is hep C positive.

This group meets on the last Tuesday of each month at the Council.

After promising my partner I would attend the first meeting with her, I found it surprisingly interesting. I chose to attend more. I’m glad I did. These groups gave me more understanding of the difficulties my partner was facing and an opportunity to ask questions she couldn’t answer.

Being there with my partner, and learning about hep C together has brought us closer together.

7pm-830 pm 4 The Parade Norwood

Womens’ Coffee Mornings October 9th November 13th Xmas break-up December 11th 10.30am-12.00 noon 4 The Parade Norwood

14

Hep C Community News

Issue 13

14

Adelaide Support Group

Managing Symptoms What are the symptoms most commonly identified by people calling the Telephone Information Line?

Come and hear ways to manage symptoms from a number of different perspectives, including a GP, a naturopath, and a counsellor.

6 pm

4th Oct.

Adelaide Central Mission 10 Pitt St Adelaide Speakers: Alan Yale - Adelaide Counselling Team Dr John Ring - Flinders Medical Centre Debra Salleh - Naturopath

AGM Wednesday 4th October Following the Adelaide Support Group

Newly Diagnosed ?

Would you like to learn about hepatitis C in language that’s easy to understand, have the opportunity to ask questions and hear from someone who is living with the virus ?

The Council will be holding a hepatitis C information session at our new premises, 4 The Parade Norwood. at

12.30 - 2.30 pm Thursday 12th October

Peer Telephone Information Officer Training The Hepatitis C Council of SA Inc. is running a Peer Telephone Information Officer Training course for people affected by hepatitis C who would like to help others.

On successful completion of the course, people will have an opportunity to work as a volunteer Peer Telephone Information Officer with the Council.

9.30 am - 4.30pm 17th/18th/19thOctober Contact Vanessa on 8362 8443 as numbers are limited.

15

Hep C Community News

Issue 13

15

Resource list

Other Services

Hepatitis C Information packs contain a Contact booklet, pamphlets and membership form in a small sized envelope.

The Adelaide Counselling Team Inc provides a free independent counselling and advocacy service specialising in Hepatitis C and associated issues.

Ph: (08) 8363 2000

Information Sheets Liver Biopsy Combination Therapy Genotypes Fatigue Facts Hepatitis C in Australia - A Snapshot New Additions Cirrhosis Pegylated Interferon

Pamphlets C Positive - What does it mean?

What is Hep C - Indigenous What is Hep C - Low literacy ABC Positive Discrimination Hep C - Women, Pregnancy and Babies C Talk - Positive Speakers’ Program Support Group Guide Hep C Council of SA Inc - Council services Hep C - Dental Care Adelaide Counselling team Healthy Body Art

Booklets Preparing for Testing Contact: Post Test Information for Hep C Women and Hepatitis C

Support Group Transcripts Testing & Hepatitis C - Dr Robina Creaser Women and Hepatitis C - Dr Jo Thomas Acupuncture and Hepatitis C - Lynn Lobo

Other Publications Diet and Hepatitis C - A Common Sense Guide to Healthy eating At Home with Hepatitis C Lesbians and Hepatitis C Australian Hepatitis C Chronicle - Quarterly publication of the Australian Hepatitis Council Hep C Review - Quarterly publication of the NSW Hepatitis C Council

16

SAVIVE-South Australian Voice for IV Education provides peer-based support, information and user education. SAVIVE is a Clean Needle Program outlet.

Ph: (08) 8362 9299 Clinic 275 provides free and confidential advice, testing and treatment for all STDs, including HIV/AIDS. Ph: (08) 8226 6025 Toll free country call: 1800 806 490 The Second Story-Child and Youth Health provides a free confidential youth health service for young people aged 12 to 25 years in the metropolitan area.

City (08) 8232 0233 Elizabeth (08) 8255 3477 Christies Beach (08) 8326 6053 ADIS-Alcohol and Drug Information Service provides counselling, information, referrals and a current location list of your nearest Clean Needle Program outlet.

Ph: 1300 131340 (24 hrs Toll Free) Hepatitis Helpline provides information, counselling, referral and support over the phone.

Ph: 1800 621 780 9am—9pm Nunkuwarrin Yunti Ph: (08) 82235011 Multicultural Communicable Diseases Program provides support, education, information and referral services for culturally and linguistically diverse communities affected, or at risk of infection of hepatitis C and/or HIV. Ph: 8223 3433

Hep C Community News

Issue 13

16