#24 Hep C Community News

Hep C Community News Christmas 03

Issue 24

Everyone at the Hepatitis C Council of SA Inc would like to wish all the members a safe and happy holiday season.

We would also like to take this opportunity to thank everyone for their support through out the year.

We look forward to continuing to work hard for the hepatitis C affected community in the New Year

Hepatitis C Community News

Contents Invitation PM Transcript

4 The Parade Norwood. SA 5067 Ph. (08) 8362 8443 SA Regional Callers 1800 021 133

Volunteer News

4—5 5

National Perspective

6—7

Global Perspective

8—9

Feature Article Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55

3

10—13

HCV RNA Testing

14

S100 Update

15

(GST inclusive)

You can request a zero-cost membership Donations do not attract GST

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

Personals

16—17

Making Contact

18—19

Head to Head Study

20

New Resources + Tales

21

Recipe Corner

22

Inspirations

23

Additional Services

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

Do you enjoy reading the Hep C Community Newsletter but always want to read more?

Check out the Hepatitis C Council of NSW "Hep C Review" online at http://www.hepatitisc.org.au/reviews/reviews.htm

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.

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Hepatitis C Community News

Issue 24

Come and join us celebrate Xmas & New Year

December 17th 5pm Rymill Park (off Rundle Rd) BBQ provided, byo drinks

The Hepatitis C Council of SA will remain open over the holidays to take phone calls and offer support to the hepatitis C affected community.

There will be limited staff available so if anyone would like a face to face meeting please phone for an appointment before coming in. Thanks

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Claims that zero tolerance has provoked Transcript rise in Hepatitis C infections

This is a transcript from PM. The program is broadcast around Australia at 5:10pm on Radio National and 6:10pm on ABC Local Radio.

PM - Friday, 13 June , 2003 18:30:00 Reporter: Gerald Tooth

the whole Government frontbench is needed to come up with an answer.

MARK COLVIN: The Federal Government is fending off allegations that its tough-on-drugs stance has fuelled an epidemic of Hepatitis C infections. The claim is made in a special report the Government had prepared by its own Health Department, a report it's been sitting on since last November.

KAY PATTERSON: The reports were to inform Government policy and the next strategy, and we will have a response to that as a whole of Government. It's only appropriate that the Attorney-General and all the other ministers who need to consider the report, consider the implications of the report, need to have time to do that.

The Australian newspaper today quoted the leaked report as predicting half a million cases of Hepatitis C in Australia by the year 2020, and as saying that "the urgency of this situation cannot be overstated".

GERALD TOOTH: What the minister is saying is don't expect this report with major public health implications to be released any time soon.

It also linked the looming epidemic to the Government's zero tolerance drug policy which it says has "contributed to increased transmission rates". Health Minister Kay Patterson is defending the zero tolerance policy, but refusing to release the report.

Gerald Tooth reports.

GERALD TOOTH: Peter is a Vietnam veteran in his fifties. He's a heroin user and has Hep C. It doesn't stop him shooting up in the company of his young girlfriend.

PETER: At my age, we have trouble getting my veins, so we have blood everywhere. Sometimes it looks like there's been a slaughter. She has to hold my arm, I hold her arms and that's how Hepatitis C is spread, blood to blood.

KAY PATTERSON: We'll respond to the report in due course, which will be our response to the next strategy, and we're setting up a new committee, a new structured committee and it's only appropriate that committee has time to look at those reports and also respond to the Government's response on that.

GERALD TOOTH: So while the Government is happy to have a conversation about Hepatitis C with itself, the question of it's tough on drugs stance having health implications won't be something they'll be talking about publicly.

Health officials however, are saying the tough on drugs stance is having an impact, particularly when it comes to the implications of harm minimisation programs, such as needle exchanges.

And okay, we may have clean needles and all that now, but we haven't got the clean, hygienic facilities to hit up in. Only very few people hit up in a nice clean house.

Doctor Graham McDonald is a senior lecturer at the University of Queensland's medical school and is an expert in Hepatitis C. He says zero tolerance encourages a police attitude that doesn't help harm minimisation programs.

GERALD TOOTH: Hepatitis C is a blood-borne virus that has a grip on the intravenous drug using community. It's estimated that there is a new infection every 32 minutes. It comes as little surprise then, that the Federal Government's own Health Department is predicting half a million Australians will be infected within 20 years.

GRAHAM MCDONALD: The zero tolerance does have an impact then on things like police behaviour. So we do occasionally have reports of stake-outs by police and media at needle syringe programs, which is clearly going to limit the effectiveness of that.

What is a surprise though, is that a special Health Department report is pointing the finger at the tough on drugs policy for contributing to that. For Health Minister Kay Patterson it's a link that's difficult to explain away. In fact, it seems almost

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I mean you're not going to go get your sterile syringes and disposal packs if you think there's something there who's recording you. The anonymity of those environments needs to be preserved, so there are some flow-on effects from zero tolerance, potentially.

(Continued)

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VOLUNTEER NEWS GERALD TOOTH: Doctor McDonald, however, is reluctant to make the strong link made in the leaked report between zero tolerance and massive increases in Hepatitis C infections.

GRAHAM MCDONALD: I haven't seen the report so I can't see how they reached that conclusion.

GERALD TOOTH: Well, what's the medical point of view?

GRAHAM MCDONALD: The medical point of view?

GERALD TOOTH: In terms of the success of harm minimisation compared with a policy of zero tolerance?

GRAHAM MCDONALD: Look, I'm sorry Gerald, my area of expertise is the management of Hepatitis C and I'm not involved medically in harm minimisation. The harm minimisation is the approach that we'd like to take and we've still got some way to go with that. There's still some intolerance with regard to things like needle and syringe programs.

MARK COLVIN: Hepatitis C expert Dr Graham McDonald of the University of Queensland, and that report from Gerald Tooth.

Thanks to the ABC (Australian Broadcasting Corporation) for permission to reproduce this transcript.

I never cease to be amazed at the incredible range of experiences that Council volunteers have had.

Volunteers at the Council come from varied backgrounds and have different skills and abilities.

Incorporating those skills and abilities into the Volunteer Program is one of the challenges of my position.

Whilst we continue with our two main programs, the resource program and the phone line, volunteers also have a role in public awareness activities.

Some recent initiatives by volunteers have paid off and we have just received approval to put up our information and support line poster in the James Place toilets in town.

This idea came from Wayne Warden, a very active volunteer here at the Council. Wayne was also instrumental in getting Hepatitis C information into all IMVS agencies both in Adelaide and throughout the State. We were delighted, during a recent resource run to Port Pirie, to find our poster prominently displayed at the IMVS agency there.

So thanks to Wayne and ALL the volunteers for their continued insight and dedication to the cause of raising public awareness about the very tricky Hepatitis C virus.

In other news, 7 volunteers recently completed the positive speaker training, for which they will receive competencies from the Certificate 4 in Community Services. Congratulations to all who participated in the program, which is at the forefront of our educational activities.

The original ABC transcript can be viewed at http://www.abc.net.au/pm/content/2003/s879573.htm

VOLUNTEERS WANTED The Hepatitis C Council (HCCSA) has a limited number of vacancies for resource volunteers.

The volunteer program runs on Mondays, Tuesdays and Wednesdays between 10.00 – 4.00.

Within these hours, your shifts can be negotiated.

The minimum commitment required is a threehour shift once a week. No experience is required, however, previous administrative experience will certainly be valued! Training will be provided.

The kinds of things that volunteers do are: Filling order forms Making up resource packages Mail outs Washing up (staff have to do this also!)

Janette Chegwidden Volunteer Coordinator Producing resources using office equipment Graphic design – designing posters Staffing information stalls at public events Reception work (if skills are appropriate) What do you get out of volunteering at the HCCSA? Gain valuable workplace skills “Giving something back” to the community Training opportunities A sense of achievement at the end of your shift The opportunity to meet new people Assists in building self esteem If you think you might be interested in this kind of work, please call the volunteer coordinator, Janette Chegwidden, on 8362-8443 for a no obligation chat.

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A national perspective of Hep C Number of diagnoses The National Notifiable Diseases Surveillance System collates diagnoses of hepatitis C from all states and territories in Australia. Most states and territories collect both INCIDENCE (new cases of hepatitis C) and PREVALENCE (old or longstanding cases of hepatitis C, or those of unknown duration) with the exception of Queensland and NT which only collect prevalence cases.

There are usually around 15,000-20,000 people diagnosed with hepatitis C every year in Australia.

Some of these people will have had the virus for

many years, and others will have contracted it relatively recently. Last year in Australia 15,953 people were diagnosed with hepatitis C. 614 of these people lived in South Australia. Both the national and state notification data were down compared to previous years (previously there have been around 1000 people diagnosed with hepatitis C in South Australia). It is clear from the graph below that by far NSW has the most diagnoses, followed by Victoria, Queensland, Western Australia, South Australia, Tasmania, ACT and finally the Northern Territory.

Number of Hep C Diagnoses by State/Territory and Year 9000 8000 7000

NSW VIC

6000

QLD

5000

WA SA

4000

TAS ACT

3000

NT

2000 1000 0 1998

1999

2000

Age of people becoming newly infected with Hep C in Australia The graph below is quite startling – over 63% of incident cases (that is people who have been recently infected with hepatitis C) are occurring in people UNDER 30 years of age.

2001

2002

Gender of people being diagnosed Of all the people becoming diagnosed in Australia, around 63% were males compared to 37% of females.

Gender of Hep C diagnoses (since 1998)

New cases of hepatitis C in 2002 by age group 60% 50%

males

40%

37%

females

30% 20%

63% 10% 0%

0-4

5-14 15-19 20-29 30-39 40-49 50-59 60+

(Continued on next page)

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Mode of infection Exposure to hepatitis C is categorised into a hierarchy of risks for infection. For example, if injecting drug use as well as a history of surgery, blood transfusion or tattoos was reported, exposure was categorised as injecting drug use.

Estimated number of people living with Hep C in Australia and breakdown of liver disease Number

Plausible range

Number of people living with Hep C in Australia Exposed to Hep C but not chronically infected (PCR negative) Stage 0/1 liver disease

225,000

(166,000-270,000)

57,000

(42,000-68,000)

133,000

(98,000-160,000)

Stage 2/3 liver disease

29,000

(21,000-34,000)

Living with hepatitis C related cirrhosis

6,900

(5,300-8,300)

Number

Plausible range

189

(140-230)

55

(41-66)

Hepatitis C–related liver failure Hepatitis C-related hepatocellular carcinoma (cancer) Testing for Hepatitis C by the Red Cross Blood Service In South Australia in 2002, there were 12 Hepatitis C Antibody Positive test results from people donating blood to the Red Cross. In the whole of Australia there were 173 Hepatitis C Antibody Positive test results from blood donations.

Transplant There have been 244 liver transplants performed in Australia and New Zealand with Hepatitis C as the primary cause of liver disease. This makes up 15.7% of all liver transplants. In addition, there have been 9 transplants with hepatitis B and C coinfection being the primary cause of liver disease.

Treatment It is estimated that the number of people treated on combination therapy (interferon and ribavirin) was approximately 1,640 in 2002. This was an increase from 1,391 in 2001.

The total cost of treatment on the Australian Government was estimated to be $17,128,000 in 2002. This is an increase from $13,548,000 in 2001.

Source The data in this article is sourced from the HIV/ AIDS, viral hepatitis and sexually transmissible infections in Australia, Annual Surveillance Report 2003. Edited by National Centre in HIV Epidemiology and Clinical Research, NSW. Available online at http://www.med.unsw.edu.au/nchecr Kristy Schirmer Information Officer Email : kristy@hepccouncilsa.asn.au

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A Global Perspective Hepatitis C – A Global Perspective Kristy Schirmer, Information Officer The phrase “think outside the square” can be applied to many things including hepatitis C. Sometimes in Australia and in SA it is easy to become absorbed in what’s happening in our small part of the world. I think it is always useful to keep in mind the “big picture” and look at how hepatitis C is impacting individuals and communities across the globe.

The following data is taken from the World Health Organisation (WHO) website (http://www.who.int).

WHO estimates that about 170 million people, 3% of the world’s population, are infected with HCV. The prevalence of HCV infection in some countries in Africa, the Eastern Mediterranean, South-East Asia and the Western Pacific (when prevalence data are available) is high compared to some countries in North America and Europe.

Table 1: Hepatitis C estimated prevalence and number infected by WHO Region

WHO Region

Total Population

Hepatitis C prevalence

Infected Population

(Millions)

Rate %

(Millions)

Africa

602

5.3

31.9

12

Americas

785

1.7

13.1

7

4.6

21.3

7

Eastern Mediterranean

Number-of countries by WHO Region where data are not available

466

Europe

858

1.03

8.9

19

South-East

1 500

2.15

32.3

3

Western Pacific

1 600

3.9

62.2

11

Total

5 811

3.1

169.7

57

Source: Weekly Epidemiological Record. N° 49, 10 December 1999, WHO

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It’s worth keeping in mind that the WHO’s data will be estimates of the exact number as in each country there will be different hep C surveillance and notification systems (that is, each country will have different systems for counting prevalence).

About the World Health Organization WHO is the United Nations specialized agency for health. It was first established in 1948. WHO's objective, as set out in their Constitution, is the attainment by all peoples of the highest possible level of health.

WHO is governed by 192 Member States through the World Health Assembly.

The Health Assembly is composed of representatives from WHO's Member States. The main tasks of the World Health Assembly are to approve the WHO programme and the budget for the following biennium and to decide major policy questions.

WHO defines health as “a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity.”

This is the holistic definition of health that is also adopted by the Hepatitis C Council.

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Feature Article TRAVEL INSURANCE FOR PEOPLE WITH CHRONIC ILLNESSES 1.

WHAT IS TRAVEL INSURANCE?

3.

! Most travel insurance is sold by travel agents. ! If you purchase your airline ticket or holiday package through a travel agent, they will encourage you to take out travel insurance from an insurer they have a relationship with. ! However, many travel agents don’t know much about travel insurance and simply give you a glossy brochure. ! Alternatively, you can: Contact an insurance broker to get you the best deal; Apply to insurance companies direct; or Get travel insurance from your credit card, union, bank or even your superannuation fund. ! If you have a chronic illness, it’s not a good idea to apply to an insurance company direct for cover because if you are refused, that will count against you in applying to other insurers.

! Travel insurance covers you for specific losses which happen during a holiday or other trip. ! Most travel insurance is only sold for overseas trips and some cover, such as for hospital and medical expenses can’t be sold for travel within Australia. ! The terms and conditions of travel insurance are in policy documents which are usually fold-out glossy brochures. They set out all the types of cover you can get-although it doesn’t mean you are covered for all the items. ! There are usually many limitations and exclusions on what is covered. ! People with chronic illnesses can get travel insurance-although the terms and conditions vary. ! It’s very important to check what cover you’re offered and shop around. ! See “HELP” at the end of this article.

4.

2.

TYPES OF TRAVEL INSURANCE There are two types of travel insurance: 2.1 Non-medical cover ! Lost luggage ! Theft of goods, money ! Cancelled holidays, flights.

2.2 Medical and disability cover ! Overseas hospital and medical expenses ! Loss of income due to injury or illness ! Death and disability lump sums.

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HOW DO I GET TRAVEL INSURANCE?

Hepatitis C Community News

WHAT AM I COVERED FOR? ! Travel insurance is usually divided into basic and advanced or premium cover. Medical and hospital expenses are included in basic cover-although there may be a limit on the amount of cover. ! Some items, such as death and disability insurance, might not be included at all in basic cover.

Under some policies, the amount of cover depends on how old you are and the countries you are travelling to. ! Many policies cover both you and your partner or travelling companion-although not necessarily for all insured items.

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Feature Article cont. ! The glossy brochure will spell out all the items you may be covered for, while the schedule or policy invoice will set out which of the items you are covered for.

5.

Check if the policy has a total exclusion for pre-existing injuries or illnesses.

If it has, try another insurer.

WHAT IS NOT COVERED? ! Most travel insurance policies exclude pre-existing injuries or illnesses from medical and hospital expenses and other disability or death cover. ! Injuries or illnesses which occur during your trip are coveredunless they are related to your pre-existing chronic illness. ! However, some policies allow for cover for pre-existing conditions if you pay a higher premium.

There are usually some exceptions to this, such as terminal illnesses, mental disorders or heart conditions. ! Other policies might allow cover for pre-existing injuries or illnesses if you or your doctor fill in a health questionnaire and the insurer is prepared to accept the risk. ! Some policies list some preexisting conditions they will cover, such as diabetes, epilepsy, asthma and some cancers, so long as the health problem is under control.

6.

Step 1

Step 2 Check if the policy sets out types of pre-existing conditions that are covered or excluded.

Does your chronic illness fit one of the descriptions?

If so and it’s covered, you can get the medical and disability cover.

If your chronic illness is excluded, try another insurer.

Step 3 Check if the policy has a health questionnaire.

If so, fill in the questionnaire.

Also get a certificate from your doctor as to the state of your health.

If you are in good health and not a significant risk of needing medical and hospital treatment on your trip, you should get medical and disability cover.

7.

HOW DO I APPLY FOR MEDICAL COVER? ! Under most travel insurance policies, you can get medical and disability cover for injuries and illnesses that happen during your trip. ! Under some travel insurance policies, you can also get some medical and disability cover for your pre-existing chronic illness. ! To get cover for your chronic illness, take the following steps:

WHAT IF I’M REFUSED MEDICAL OR DISABILITY COVER? ! You can appeal. ! There is no reason why you can’t get full non-medical travel insurance or medical and disability insurance for injuries or illnesses that happen during your trip. If you are refused, you should appeal. (See “Complaints” and “Appeals” next page.) ! If you are refused medical or disability cover for your chronic illness or if you are offered cover with an increased premium or with an exclusion for your condition, you might be able to appeal.

(Continued on next page)

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! Much depends on whether your chronic illness is under control and therefore not an unacceptable risk, or, if not, whether you should get disability cover with an exclusion only for your chronic illness. ! It’s very important to get medical reports from your doctors which show: ∗ Your condition is under control; ∗ Your condition fits within the definition of a listed pre-existing condition which is covered (if applicable); ∗ You are not likely to need medical or hospital treatment or make a claim from your trip; ∗ You don’t suffer from any other significant health problems. ! Send in any good medical reports with your application form or any Complaint/Appeal.

8.

9.

COMPLAINTS ! If you are refused cover or if you make a claim and it’s rejected because of a chronic illness, you can take the complaint further. ! You can lodge an Internal Dispute Resolution Complaint with the insurer. They have 3 weeks to make a decision on the Complaint. It’s important to get up-to-date medical reports and make written submissions to support your Complaint. ! If a Complaint on a claim is rejected or no decision is made, you can then lodge a Complaint to the Industry Complaints Scheme, the IEC. ! The IEC can order the insurer to pay your claim and it’s costsneutral. ! The IEC doesn’t have the power to order an insurer to give you cover, but the rules might soon be changing to allow the IEC to deal with discrimination Complaints. ! It’s very important to get the right medical reports dealing with the relevant issues and make submissions supporting your Complaint. Many Complaints are successful or are settled. ! Get help with a Complaint.

STANDARD COVER ! Travel insurance policies are standard cover policies under the Insurance Contracts Act. ! Under the Act, travel insurance companies can’t refuse to cover you for medical, hospital and transport expenses incurred as a result of an injury or illness suffered on your trip unless: -you were subject to the injury or illness in the six months before you took out the policy and afterwards; or -the insurance company told you in writing within 14 days of the policy start up date that you won’t be covered. ! This means that if you weren’t suffering from the effects of your chronic illness in the 6 months before the start date, if you weren’t given the policy or a brochure before starting your trip

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or if the wording is unclear, you might still be able to claim under your travel insurance policy.

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Hepatitis C Community News

APPEALS 10.1

Anti Discrimination Appeals ! If your claim or application for insurance cover is rejected, you might be able to lodge a Complaint with the Equal Opportunity Commission. ! Under anti-discrimination laws, insurance companies can’t discriminate against someone with a chronic illness unless the discrimination is reasonable or Issue 24

based on actuarial or statistical data that justifies the discrimination. ! This means that if you are refused travel insurance or of your insurance claim is rejected because of your chronic illness, the insurance company will have to show that there is evidence from past claims that justifies excluding your chronic illness and that on the medical evidence, your chronic illness is an unacceptable risk. ! Experience shows that insurance companies often rely on data or medical research that is either incomplete or out of date. They often fail to distinguish between various levels of chronic illness and haven’t kept up to date with new treatments that reduce the risk of death or hospitalisation. ! If you bring a discrimination Complaint, the onus is on the insurance company to justify the discrimination. That might be hard to do, particularly if you have medical evidence that shows your chronic illness is under control and not a significant risk of leading to a claim while you are on your trip. ! Discrimination Complaints are lodged with the Equal Opportunity Commission and must be made within 12 months of the rejection of your claim or cover.

!

! ! ! !

11.

HELP

! A free Superannuation and Insurance Advice Service has been set up to provide legal advice to people with disabilities and others. ! The Superannuation and Insurance Advice Service offers free legal advice to people with disabilities, their family and friends, including on travel insurance. ! The advice is given by volunteer lawyers and is free. ! You can have a free appointment at the Epilepsy Foundation, 818-824 Burke Rd, Camberwell, or the MS Society, cnr Gordon and Barkly Streets, Footscray. Appointments can be made by calling the Chronic Illness Alliance Inc on (03) 9805 9126. ! If you can’t come to the Legal Service or if you have ANY superannuation or insurance questions call the Chronic Illness Alliance on (03) 9805 9126 and you will be referred to a lawyer for free telephone advice.

10.2 Courts If your travel insurance claim is rejected or the IEC refuses your complaint, you can take your case to Court.

Unlike the IEC, the loser usually pays for the costs in a court case.

However, many court cases win or are settled.

There is usually a 6-year time limit for lodging a Court Writ from when the claim occurred.

If your claim is rejected, get advice on your appeal rights (See “HELP” next.)

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Algorithm for HCV RNA Testing to Identify Patients with Early Virologic Response Treated with Peginterferon Alfa Plus Ribavirin Following is a new algorithm for HCV RNA testing designed to identify peginterferon plus ribavirin-treated patients with an early viral response (EVR) to therapy. These patients have a high probability of achieving a sustained viral response (SVR). The algorithm also will identify those treated patients without EVR in whom treatment justifiably may be discontinued.

12 Weeks

Pegylated IFN and Ribavirin Treatment Baseline Genotype and Quantitative HCV RNA

Genotype 1

Genotype 2 or 3

Retest quantitative HCV RNA

No need to test HCV RNA

HCV RNA decreased > 2 log vs baseline

HCV RNA undetectable

HCV RNA not decreased 2 logs

HCV RNA detectable

Repeat HCV RNA at 24 wk

Negative

Positive Discontinue Treatment

Complete Treatment Quantitative (Viral Load) HCV RNA testing is recommended at baseline and at week 12 of therapy in patients with genotype 1. EVR (decrease in HCV RNA > 2 logs compared with baseline or undetectable by PCR at week 12 of therapy) is associated with a high chance of response and justifies continuation of treatment.

Those who have at least a 2-log decrease in HCV RNA but remain HCV RNA positive by PCR should have HCV RNA retested by PCR at 24 weeks.

Because no patient without at least a 2-log decrease in HCV RNA at 12 weeks subsequently achieved SVR, the lack of EVR usually justifies discontinuation of therapy.

Patients with genotypes 2 or 3 have a high

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Complete Treatment

chance of achieving EVR and SVR. Retesting of HCV RNA during treatment is not cost-effective in these cases.

Summary review of the article in which this algorithm appears can be found at; http://www.hivandhepatitis.com/hep_cnews/090303b.html 08/29/03 Reference GL Davis and others. Early virologic response to treatment with peginterferon alfa2b plus ribavirin in patients with chronic hepatitis C. Hepatology 38(3): 645-652.

September 2003.

Abridged with thanks via... hivandhepatitis.com

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S100 Update PHARMACEUTICAL BENEFITS Highly Specialised Drugs available under arrangements provided for by Section 100 of the National Health Act. Products: PEGASYS + Ribavirin (Ribavirin and Peginterferon alfa-2a) PEG-INTRON + Ribavirin (Ribavirin and Peginterferon alfa-2b) SECTION 100 CRITERIA CAUTION: Treatment with interferon alfa has been associated with depression and suicide in some patients.

Patients with a history of suicidal ideation or depressive illness should be warned of the risks.

Psychiatric status during therapy should be monitored.

CAUTION: Ribavirin is a category X drug and must not be given to pregnant women. Pregnancy in female patients or in the partners of male patients must be avoided during treatment and during the 6-month period after cessation of treatment.

Private hospital authority required Treatment of chronic hepatitis C in patients 18 years or older who have compensated liver disease and who have received no prior interferon alfa or peginterferon alfa treatment and who satisfy all of the following criteria: •

•

Histological evidence of Metavir (or equivalent index) stage 2, 3 or 4 fibrosis or stage 1 with grade A2 or A3 inflammation, i.e. moderate to severe inflammation evident on liver biopsy (except in patients with coagulation disorders considered severe enough to prevent liver biopsy); Abnormal serum ALT levels in conjunction with documented chronic hepatitis C infection (repeatedly anti-HCV positive and/or HCVRNA positive);

•

Female patients of childbearing age are not pregnant not breastfeeding and both patient and their partner are using effective forms of contraception (one for each partner). Male patients and their partners are using effective forms of contraception (one for each partner).

Female partners of male patients are not pregnant.

For patients with genotype 2 or 3 hepatitis C without hepatic cirrhosis or bridging fibrosis, the treatment course is limited to 24 weeks. For hepatitis C patients with genotype 1, 4, 5 or 6 and those genotype 2 or 3 patients with hepatic cirrhosis or bridging fibrosis, the treatment course is limited to 48 weeks.

Patients with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of an HCV RNA quantitative assay (performed at the same laboratory using the same test) shows that the plasma HCV RNA has become undetectable or the viral load has decreased by at least a 2 log drop. (An HCV RNA assay at Week 12 is unnecessary for genotype 2 and 3 patients because of the high likelihood of early viral response by Week 12).

Patients with genotype 1, 4, 5 or 6 who are viral positive at Week 12 but have attained at least a 2 log drop in viral load may only continue treatment after the first 24 weeks of treatment if plasma HCV RNA is not detectable by an HCV RNA qualitative assay at Week 24. Similarly, genotype 2 or 3 patients with hepatic cirrhosis or bridging fibrosis may only continue treatment after the first 24 weeks if plasma HCV RNA is not detectable by an HCV RNA qualitative assay at Week 24.

An HCV RNA qualitative assay at Week 24 is unnecessary for those patients with genotype 1, 4, 5 or 6 who became viral negative at Week 12.

NOTE: Hospitals should adhere to the National Health and Medical Research Council’s Taskforce report on hepatitis C regarding the facility requirements for the selection of treatment centres.

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Personals

Rural Update

HEPATITIS C. HCV (HEPATITIS C VIRUS) ENTER THE DRAGON.

It all means the same thing. A Virus that can only be spread by blood to blood contact, causing serious and sometimes fatal liver complications. To some people it clears itself. To others, medication can possibly put the virus into a remission like state known as SVR, or sustained viral response.

To others it can be something completely different. A slow starting Virus that gains momentum over the years. If you didn't know you have it, like me, then you didn't realise the effects creeping in. It took me 25 years and by then it was too late.

It’s not the kinda thing you have a routine test for. You know, Flu shot, ear drops, cough mixture, Hep C test. Certainly I would advise anyone who had tattoos or studs or injected drugs or used drugs or had organ or transfusions back in the good old days to GET TESTED. The government advertising machine has been very slow moving compared to the AIDS awareness campaign back in the eighties & nineties, but with the probability of having four times that amount of infections.

The drug manufacturing companies are exhausting their supplies of medications as quick as they can make the stuff. They are fully aware of the multi billion dollar industry that is going to be generated during this period of people finding out about being infected. The amount of time and money already invested in years of testing and trialing different drugs and therapies will finally start reaping benefits.

I myself am already getting other benefits by being on a clinical trial by one of the major companies. With my condition I was not entitled to any new medication until it had been tested and approved by the various government departments. This could take years, and I don't have years. I am not moaning at the Govt. for not allowing people to take drugs until they are deemed safe or not. There must be government dept's to monitor all this stuff, but I cant wait.

REMEDIES. There are a few different treatments available at the moment. Each one with its share of pro’s and con’s. That's probably not the term to use but it will do us for the time being. Once you suss them out it all boils down to two drugs.

Pegylated Interferon a or b and Ribavirin.

For natural remedies or alternate therapy there are endless lists of Doctors and companies selling everything from eye of newt to magnetism for beginners.

Don't get me wrong, there are some excellent web sites to visit and you can read pages of testimonials with lots of satisfied customers using a huge range of herbal remedies. They also come with a huge range of prices, none of which are claimable under any sort of insurance. If you can afford it, well it doesn't matter does it. You still need proper testing as recommended by a specialist or Infectious disease pro or liver guru.

(Continued next page)

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Continued I would rather have a treatment that has been lab tested and tried by Doctors and Technicians over the years at great expense to the company and have documented proof, than take someone's word for it.

My choice completely.

FINDING A DOC Finding a good GP to start with is a great help. It can be a long process combating HCV, so a doc who actually knows something about the disease to start with, and also who cares about what you are going to go through is invaluable. The majority of health care professionals that I have experienced over the years have been very helpful. There are however the Doctors From Hell.

One that stands out firmly in my mind we shall call Dr Know Nothing.

If I had taken any notice or any medication she offered or prescribed, I would definitely not be here today. So if you have any doubts whatsoever, get a second opinion.

Even though you will be referred to a specialist, you will still need your GP for many things along the way.

Keep records. Dr’s appts, blood tests, when you start or stop medications etc.

My wife and I keep track of everything.

Mainly coz my short term memory is shocking. Brain fog they call it, and it is very real. Apparently this corrects itself when you finish your medication and possibly clear the virus. You probably just forget that you had it.

Hepatitis C Community News

Chris

Issue 24

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Making contact with the Hepatitis C Council

T

he Hep C Info and Support Line, which is coordinated by the Hepatitis C Council, is staffed by a team of dedicated volunteers and paid workers.

remaining contacts were from the health sector, other workplaces or students.

Of the people calling from the hepatitis C affected community, we received more female than male callers (39% compared to 32%). This is interesting given that 35% of people diagnosed are females compared to males who make up 65% of diagnoses.

In the last financial year (2002-2003) we received 891 contacts. On any given day we will usually receive around 2-5 contacts.

By far the most common way people contact us is over the phone (over 90% of all contacts were by phone). But we’re not just a phone line. You can also email us or write to us if you’d prefer.

You’re always welcome to visit the Council but if you would like to make sure there is someone here to talk to it’s best to call first.

65% of contacts were from the Council’s primary target group being those living with or affected by hepatitis C. The majority of the

Figure 1 Age of people contacting the Council % of contacts

As expected, the majority of people who made contact with the Hep C Council were from the Adelaide metropolitan area (83% of contacts).

13% of contacts were from rural areas of the State. We also received a few contacts from interstate and even overseas. This proves to us that people from all walks of life are affected by hepatitis C. There seems to be a “rural legend” that only people in the city get hep C but clearly this is just not true.

The Council has contact with people from a variety of age groups. Of the primary target group, the approximate age breakdown of people who contact us can be seen in figure 1. It is obvious that by far most of the people who contact us are between the ages of 25 and 60 years old – the main age group of new diagnoses.

40 30 20 10 0 Youth under 25

25-40 years

41-60 years

> 60 years

Unknown

T

he Hep C Info and Support Line handles a variety of information about various hepatitis C issues ranging from testing, transmission, treatment, healthy eating, discrimination and disclosure (and many other areas). The most commonly discussed topics were natural history, transmission, testing, and Hepatitis C Council services. Also noteworthy is that over 16% of all contacts involved a discussion about discrimination or disclosure highlighting the impact these issues have on people affected by hepatitis C. A breakdown of all the topics discussed can be seen in figure 2 below.

Figure 2

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D ie al t co ho l sa dr u fe gs in je c di ting sc di l sc osu rim re in at io n o h& hi v co s pr infe og c re . ss i ci on rrh os is ot he r

500 400 300 200 100 0 ge ne ra lh ep C te st in sy g m tra pto ns ms m is s tre ion at m al en t/c om bi t op p sy th C e ou nc rap ie il se s rv ic Va Oth es er cc H in ep e A an d B

number of calls

Topics discussed during contact

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Figure 3

T

Referrals made by Hep C Council 91

78 63

“The info sent in the mail was received with many thanks. They will be of great use to me” “Some of my ignorance has been controlled” (nurse) “Thanks for listening to me” “I found the answers to my questions – thanks for well trained workers who are supportive and knowledgeable” “It is comforting to know I’m not alone”

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10 other

Dental clinic

Alt/comp practitioner

Treatment centre/specialist

Hep C Friendly GP

12

37

SAVIVE

27

C-Clearly

32

Hepatitis Helpline

63

Own GP

100 80 60 40 20 0

Mosaic

number of referrals

he Council remains an important point of referral to other services.

This year we made 429 referrals to services outside the Hepatitis C Council including C-Clearly, Mosaic, or to a specialist.

A breakdown of different referral services can be seen here in figure 3.

F

eedback provided by clients continues to be positive and is often an expression of gratitude for the chance to speak to someone who takes time to listen without being judgemental. Many clients express relief for being able to talk to someone who themselves is affected by hepatitis C. This service is crucial not only in empowering the affected community to better increase control over their health, but also in reducing the isolation and fear of discrimination in disclosing their Hep C status.

I

f you contact us or refer people to the Info and Support Line please remember that all our calls are confidential and although we do take some information about the call we do not store any identifying information except for suburb/town and postcode. If we take your name and address to send you information we will shred it afterwards, without fail, every time.

Thanks to the staff and volunteers who worked on the Info and Support Line over the past 12 months.

You are all wonderful – the community is lucky to have your dedication and skill.

Keep on contacting us and keep on referring.

We’re here to help. You are not alone.

Kristy Schirmer Information Officer

Phone: 8362 8443 Regional Callers: 1800 02 11 33 While the Hepatitis C Council realizes that statistics are important for program planning and evaluation, we would like to stress that if you contact us, you are more than just another number. Every person who contacts us is treated individually with your questions and concerns also being our priority.

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Schering-Plough to Initiate First Head-to-Head Study Of PEG-Intron Versus Pegasys for Chronic HCV Infection Schering-Plough (Schering) announced on 23/9/03 plans to initiate a large clinical study involving 2,880 patients that for the first time will directly compare the safety and efficacy of PEG-Intron (peginterferon alfa-2b) and Pegasys (peginterferon alfa-2a). ScheringPlough manufactures and distributes PEGIntron and Hoffmann-La Roche (Roche) manufactures and distributes Pegasys.

Both PEG-Intron and Pegasys are FDAapproved in combination with ribavirin for the treatment of chronic hepatitis C infection.

Schering says the IDEAL Trial (Individualized Dosing Efficacy vs. flat dosing to Assess optimaL pegylated interferon therapy) will compare the efficacy and safety of individualized weight-based dosing with PEG-Intron and Rebetol (ribavirin) versus Pegasys and Copegus (ribavirin).

Pegasys, a premixed solution, is dosed at 180microgram (mcg) as a subcutaneous injection once weekly, regardless of individual body weight. Available as a 200mg tablet, Copegus (ribavirin) is dosed at 800 – 1,200mg taken twice daily as a split dose, depending on the patient’s genotype and recommended length of treatment.

PEG-Intron is not premixed and patients must learn how to mix the powder with the sterile water for injection. When administered in combination with Rebetol (ribavirin), the recommended dose of PEGIntron is 1.5 micrograms/kg/week. The volume of PEG-Intron to be injected depends on the vial strength of PEG-Intron and the patient’s body weight. The recommended dose of Rebetol is 800 mg/ day in 2 divided doses.

Genotype 1 HCV is the most common in the US and worldwide, and is also the most difficult genotype to treat successfully. About 70 percent of Americans with HCV infection have genotype 1.

Schering-Plough Research Institute (SPRI), in collaboration with several medical centres, will conduct the comparative study, which the company notes is in response to requests by the hepatitis C medical and patient communities, and to clear up misperceptions in the marketplace about these two similar treatments.

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“This is a very important study because these two treatment regimens have never before been directly compared,” said John McHutchison, MD, Medical Director, Liver Research, Duke University Medical Centre, and co-principal investigator of the trial.

“Findings from previous studies of PEGIntron and Pegasys cannot be compared because of differences in study design, patient populations and other variables,” he said.

“The IDEAL trial will include a large number of patients, and provide a high degree of ‘statistical power’ to determine for the first time differences in the efficacy and safety of these two therapies,” said Mark Sulkowski, MD, Assistant Professor of Medicine, Medical Director, Viral Hepatitis Centre, Division of Infectious Diseases, Johns Hopkins University School of Medicine, and co-principal investigator of the trial. “Patients infected with the hepatitis C virus and their health care providers want answers to these important questions as they seek the best available treatment options for the patient’s individual circumstances,” he said. “[Schering is] confident that this large headto-head study between PEG-Intron and Pegasys will provide valuable information that will help physicians make informed choices and provide hepatitis C patients with the best chance for achieving a sustained viral response,” said Robert J. Spiegel, MD, senior vice president of medical affairs and chief medical officer, Schering-Plough Research Institute.

Abridged with thanks via HEPV_L email list.

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New and Available This resource, aimed specifically for GPs, covers a number of topics including:

• pre-and post-test counselling • testing • monitoring and general management • shared care and referral • prevention issues, and • discrimination If you would like to obtain a copy for either yourself or to pass on to a GP, please contact us on 8362 8443 or 1800 021 133 (SA regional callers).

For multiple copies contact ASHM on (02) 9368 2700

Tales One of the more common tales would be that mosquitoes can transmit the hepatitis C virus. This little piece of information below should help ease any concerns you might have.

Mosquitoes and Hep C With summer time here people might be hearing the annoying buzz of mozzies and wondering if they can transmit hep C. Well – the answer is NO mosquitoes do not transmit hepatitis C. When a mosquito bites a person, it injects salivary fluid through one passage and sucks blood through a different passage. Blood goes directly into a mosquito’s stomach where it is broken down. Other organisms such as malaria can live in the salivary glands of mosquitoes and are passed on when they feed. Hep C is not found in these glands and cannot be passed on this way.

Taken from Contact 01, produced by the Australian Hepatitis Council 2001

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Recipe Corner Christmas Cake Grandma’s tried and true recipe

Ingredients 250 g (1 cup) butter 1 cup sugar 1 teaspoon caramel 1 ½ cups raisins 1 ½ cups citron peel 3 tablespoons dates or figs (chopped)

6 eggs 1 ½ cups sultanas 1 ½ cups currants 3 tablespoons almonds 2 ½ cups plain flour ½ cup brandy

Method 1. Attend to oven 2. Line an 18 x 7 cm deep cake pan with 2 or 3 folds of paper or with aluminium foil.

3. Beat butter and sugar to a cream, and add caramel.

4. Add the beaten eggs, one at a time, and continue beating.

5. Add the prepared fruit and nuts.

6. Add flour, and lastly brandy or sherry, mixing well 7. Pour into prepared pan.

8. Bake in slow oven, 140 –150 degrees Celsius, for 3 to 3 ½ hours.

9. Test by piercing with a skewer. If it is free from mixture when withdrawn, the cake is cooked.

10. Allow to remain in pan till cold.

Not Actual Grandma Actual Cake

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Inspirations The allegory of the Frog ...

Lesson of Life

Once upon a time there was a race ... by frogs The goal was to reach the top of a high tower.

Many people gathered to see and support them.

The race began.

In reality, the people probably didn’t believe that it was possible that the frogs could reach the top of the tower, and all the phrases that one could hear were of this kind : "What pain !!!

They’ll never make it!"

The frogs began to resign, except for one who kept on climbing The people continued : "... What pain !!! They’ll never make it!..."

And the frogs admitted defeat, except for the frog who continued to insist.

At the end, all the frogs quit, except the one who, alone and with an enormous effort, reached the top of the tower.

The others wanted to know how did he do it.

One of them approached him to ask him how he had done it - to finish the race.

And discovered that he... was deaf! ...Never listen to people who have the bad habit of being negative... because they steal the best aspirations of your heart!

Always remind yourself of the power of the words that we hear or read.

That’s why, you always have to think positive POSITIVE !

Conclusion: Always be deaf to someone who tells you that you can’t and won’t achieve your goals or make your dreams come true.

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Hepatitis C Council of SA

C-Clearly

Phone the Hep C Council for confidential information and support about hep C, as well as free written information. The Hep C Council also runs information and support sessions.

Phone to find out about upcoming sessions.

4 The Parade, Norwood.

Phone: 8362 8443 or 1800 02 11 33 (SA Regional Callers) Email: admin@hepccouncilsa.asn.au Web: www.hepccouncilsa.asn.au

C-Clearly helps to coordinate the health care of people living with hepatitis C and people who may be at increased risk of infection with hepatitis C. CClearly can help you find a “userfriendly� GP as well as access to a psychologist and a dietician.

Phone: 8410 0466 or 0428 428 027 Email: William@careandprevention.org

MOSAIC Project

The Adelaide Dental Hospital is a specially funded clinic for people with hep C who also have a Health Care Card to receive priority dental care. Some research on dental health is carried out at the clinic, however it is up to you if you choose to participate.

Free and confidential counselling for people with hepatitis C. Daytime and evening appointments are available.

Phone: 8223 4566 and ask for MOSAIC

Adelaide Dental Hospital

Phone the Hepatitis C Council for a referral on 8362 8443

PEACE (Personal Education and Community

Empowerment) A Multicultural Program

PEACE provides support, education, information and referral services for culturally and linguistically diverse communities affected by, or at risk of, infection with hepatitis C and/or HIV. Phone: 8223 3433

SAVIVE (SA Voice for IV Education) SAVIVE provides peer-based support, information and user education.

SAVIVE is a Clean Needle Program outlet 64 Fullarton Road, Norwood.

Phone: 8362 9299 Email: savive@camtech.net.au

Streetlink Streetlink is a service for people aged 12-25 years who are homeless or at risk of being homeless. Through Streetlink you can access information about hep C prevention as well as free medical and counselling services for you or your children.

1st floor, 27 Gresham St, Adelaide.

Phone: 8231 4844 Email: streetlink@ucwadel.org.au

[CNP] Locations for statewide Clean Needle Programs Contact

ADIS [Alcohol &Drug Information Service] Phone 1 300 131 340

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