#55 HepSA Community News

#55 • April 2012

Community News

HEALTHY LIVING plus Latest Research Updates

WIN! Remember that from now on, the best letter printed in each issue of the Hepat itis SA Community News will receive a $2 5 shopping voucher.

Write to us about anything to do with the magazine, the Council, living with hepatitis C, or living well ideas.

Hepatitis SA provides information, education and support to the hepatitis C community and those at risk.

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STAFF

Email the editor at james@hepatitissa.asn.au

Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Info and Support Line Coordinator: Deborah Warneke-Arnold

SA Health has contributed funds towards this program.

Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Educators: Nicole Taylor Michelle Spudic (Rural) Dale Halliday Dan Hales

About the Cover

Peer Education Coordinator: Maggie McCabe Peer Educator Mentor: Fred Robertson Peer Educators: Karan Krystal Megan Penni

Mark Will

See our stories on living healthily with hepatitis C on pages 4 and 14.

Hepatitis SA regularly runs such projects: ring us and ask for more information!

Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepatitissa.asn.au.

Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Amanda Dayna Gauri Mark Phil Philip Yvonne

Contents

Publications Officer: James Morrison

1

Hepatitis Helpline

Information and Resources Officer: Rose Magdalene

2

GPs & Hep B

ICT Support Officer: Bryan Soh-Lim

4

Bowden Brompton Cooking & Gardening Group

5

Hep B & Treatment

Chairperson: Arieta Papadelos

6

Hep C: The State of Play

Vice-Chairperson: Shabeena Laundy

10

Calming the C

Secretary: Stefan Parsons

11

Organ Donation Improvements

Treasurer: Darrien Bromley

12

Adventures in Quality Improvement

14

C Health Inspiration Workshops

Librarian: Joy Sims BOARD

Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Bill Gaston Tess Opie

Catherine Ferguson Carol Holly Jeff Stewart

Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

We welcome contributions from Hepatitis SA members and the general public.

Could this type be any smaller?

Hepatitis SA Helpline One contact point for all hepatitis enquiries There is now a single helpline phone number for all South Australians to call to get information and support regarding hepatitis B and hepatitis C.

The same information and support previously provided by calling the 1800 number is available when calling 1300 437 222 (1300 HEP ABC).

Until recently, callers either phoned 1800 621 780 to access a service provided by the Alcohol and Drug Information Service (ADIS) or they called Hepatitis Australia on 1300 437 222 (1300 HEP ABC) and were auto directed to the Hepatitis SA Helpline.

For the next six months, calls to the 1800 number will be diverted to Hepatitis SA to ensure those people who

are unaware of the change can still gain access to the information and support they need.

Your assistance is sought to advise clients and colleagues that they should phone 1300 437 222 (1300 HEP ABC) if they seek information regarding viral hepatitis.

Hepatitis SA has taken on the provision of all helpline support for people affected by viral hepatitis in South Australia.

To streamline the services offered, the ADIS-staffed Hepatitis Helpline has ceased and Hepatitis SA has taken on the provision of all helpline support for people affected by viral hepatitis in South Australia, as well as their family and friends, health professionals and the general community.

Callers should now phone 1300 437 222 (1300 HEP ABC). Outside business hours, voicemail instructs callers to leave a message to request a call back.

Hepatitis SA Community News April 2012 • 1

GPs & Hep B What doctors want to know so that they can help their patients General Practitioners are often the first health professional consulted by people with chronic hepatitis B and they play a central role in the clinical management of the infection.

GPs are essential in ensuring that people with hepatitis B understand and can respond effectively to their infection.

with most speaking one or several Chinese languages, and Vietnamese. The number of patients with chronic hepatitis B cared for by the GPs was estimated to range from at least four patients, with 13 GPs caring for over 30 patients, including five GPs who cared for more than 100 patients.

While the National Hepatitis B Strategy 2010-2013 identifies a central role for general practice in managing chronic hepatitis B, there has been little focus on the constituent elements of this role, particularly when compared to the general practice role described for the management of hepatitis C or the human immunodeficiency virus (HIV).

A new study conducted by the Australian Research Centre in Sex, Health and Society, Investigating General Practice and Hepatitis B, undertaken

by Dr Behzad Hajarizadeh, Dr Jacqui Richmond, Dr Stephen McNally and Jack Wallace, sought to provide evidence to help in implementing an effective public health response to chronic hepatitis B by exploring how GPs understand their role, and to identify the barriers to the effective clinical management of chronic hepatitis B in general practice.

Almost all GPs identified a need for further education.

Knowledge deficits related to the changes in specialist practices over the past decade as a result of a better understanding of the natural history of hepatitis B and improved treatment modalities.

The study conducted qualitative interviews with 26 GPs to identify their understanding of their role, and perspectives on the barriers and challenges to the effective diagnosis and management of chronic hepatitis B in general practice.

About two-thirds of the participants communicated with their patients in at least one language other than English, Hepatitis SA Community News 2 • April 2012

There were significant challenges identified by GPs in screening and diagnosing patients with hepatitis B. Most GPs reported not using screening protocols or official guidelines to direct screening decisions, with several expressing a need for an inclusive consensus based screening protocol. Only a minority of GPs conducted a comprehensive pre-test and post-test discussion as a part of the diagnosis process.

While there was a clear understanding from the GPs of a need for professional development, it was also acknowledged that the lack of patient education and community understanding about hepatitis B fundamentally affected their work. While few GPs provided information about the infection to patients that they had diagnosed, they identified that poor knowledge and a lack of understanding about the impact of infection affected adherence to clinical management such as regular

monitoring and/or treatment.

GPs involvement in the regular monitoring of patients with chronic hepatitis B was affected by their capacity to have meaningful involvement in the clinical management of patients, the understanding of patients about chronic disease management, treatment expectations, and an effective recall system. Inconsistency in monitoring practices were reported with only a minority of GPs using hepatitis B virus DNA viral load testing, and only one participant reporting monitoring patients who were hepatitis B e antigen negative or positive. Three GPs indicated that they referred all their patients with chronic hepatitis B to a specialist given a lack of confidence in their knowledge and skills around hepatitis B. Most participants were willing to be involved in treatment

It’s never too early for further GP training

with chronic hepatitis B, and several suggested that this model was inevitable given the limited resources and capacity of liver clinics. Some participants believed that while a specialist should initiate treatment, GPs could play a role in continuing treatment.

There is a discrepancy in current prescribing rights where GPs who are permitted under the S100 Pharmaceutical Benefits Scheme to prescribe a drug used in both HIV and in hepatitis B treatment, are unable to prescribe this same drug for hepatitis B monoinfection.

Almost all participants regardless of their perspective about GP involvement in treatment emphasised a need for training and specialist support.

Image Celeste Hodges (www.flickr.com/photos/celestehodges/121906417)

Several GPs expressed a need for expert advice when facing complicated cases within their practice, however most stated that there was no effective or accessible process for this to occur. The adequacy and timeliness of feedback from the public hospital system about patients who had been referred to these services concerned several participants.

Providing specific and detailed information about the clinical management of patients who had been sent to specialist clinics was identified as important for the professional development of GPs. The role of general practice was described as including more than diagnosing, monitoring and referral, and included mediating between patient, specialist and the hospital and health system. This broader role included preparing patients for

procedures such as liver biopsy and providing information about treatment options, and ongoing support of the patients after the specialist appointment.

This ongoing support included answering questions that patients were unable to ask specialists or that had been inadequately explained.

Systematic challenges to the role of GPs in chronic hepatitis B related primarily to the administration of Medicare.

These challenges include: • The financial benefit of conducting shorter rather than long consultations affected the willingness of GPs to spend the time to ensure that people with chronic hepatitis B understood the implications of the infection • A fear of being audited by Medicare for over-servicing of patients, particularly for GPs caring for large numbers of patients born in high or intermediate prevalence countries • The administrative requirements of the GP Management Plan (GPMP) for chronic diseases, and for some GPs, an ethical question that participation in this plan implies.

Few GPs described stigma as a significant issue in relation to their role in hepatitis B. This perspective resulted from the high prevalence of chronic hepatitis B within particular communities and the intergenerational and familial nature of hepatitis B for most people with chronic hepatitis B. The findings of this study support the development and

implementation of a range of interventions including: • Comprehensive and accessible education including screening, diagnosis and clinical management protocols particularly targeting GPs working with the communities most at risk of infection with chronic hepatitis B • An evidence-based screening protocol, developed in partnership with GPs, specialists and representatives of communities most affected by chronic hepatitis B, with specific guidance addressing concerns of GPs about auditing by Medicare for the over-servicing of patients • A nationally consistent chronic hepatitis B pre and post test protocol that provides guidance to GPs and other health care workers about patient education and support • A model of care for general practice that increases access to clinical management for people with chronic hepatitis B • Community development interventions and educational resources describing chronic hepatitis B and its impact, targeting the communities most affected by the virus • A clearer articulation of the role of General Practitioners in future national strategic responses to chronic hepatitis B. See the full report at www. latrobe.edu.au/arcshs/ downloads/arcshs-researchpublications/General-Practiceand-Hepatitis-B-Final-Report. pdf.

Hepatitis SA Community News April 2012 • 3

Bowden Brompton Cooking and Gardening Group Hepatitis SA has a garden plot up at the Bowden Brompton Community Centre. Peer educator Mark attends the garden on a weekly basis, and makes good use of his background in gardening and horticulture. I have a background in teaching healthy living and cooking skills in a variety of community settings. This is why we worked together to put together a program for young people, with Mark teaching the gardening and myself teaching the cooking.

Mahdi Nor (Hepatitis SA’s Peer Educator Co-ordinator) supervised the program (and did a lot of the eating— Editor).

With the help of two young people we were able to put together a great program we can use time and time again; a big thank-you needs to go out to Lisa Thompson and Bella Jenkins for their help in setting up our program.

On Australia Day this year we held our first actual group for young people to learn some basic cooking

Hepatitis SA Community News 4 • April 2012

and gardening skills, as well as information about what hepatitis C is, and how you can get it. The clients really enjoyed what we had to offer. Using the vegetables from the garden we cooked vegetable pizzas, and learned how to transfer seedlings to the ground.

On day two, 2 February, we cooked vegetable frittata and learned about soils and pH—the acidity of the soil— and how it affects vegetable growth. That was a fun day, as we got to test the soils around the garden plot and other places as well.

On the third day, a week later, we cooked a vegetarian pasta bake and did more important work in the garden.

All in all, I have to say I believe this program was successful in its aims, and I can speak for all of us here in saying that we can’t wait to be able to hold it again if we get the chance. We had a great time and great fun was had by all involved!

Krystal Hayden

Hep B Treatment Update Chronic hep B and PBS changes enable more people to access treatment How do we screen for hepatitis B virus (HBV) infection? The first step is to assess hepatitis B surface antigen (HBsAg) status. If it is positive, the person has hepatitis B and needs to be evaluated for possible treatment. If it is negative, assess for antibody to surface antigen (anti-HBs); if it is positive, the person has antibody-protective immunity and does not require any additional followup. However, if the person tests negative for anti-HBs antibody, they should be vaccinated.

Once a person becomes infected with HBV, how does the disease progress?

Do all infected individuals develop chronic infection?

Once they progress to chronic infection, do they all develop cirrhosis? Do they all develop liver cancer? The answer to these questions is no, but depending on when one becomes infected, the rate of progression to chronic infection varies. More than 90% of infected infants progress to chronic disease, whereas less than 5% of infected immunocompetent adults progress to chronic disease. Once chronic infection develops, up to 30% will eventually develop liver cirrhosis, which can then progress to liver cancer or liver failure. An interesting feature of chronic HBV infection is that some people may bypass the cirrhotic phase and develop liver cancer without ever having cirrhosis. This characteristic

Image courtesy of ASHM: see www.ashm.org.au/images/publications/ patient%20fact%20sheets/hbv/decision_making_hbv.pdf

differentiates this disease from hepatitis C, which is an RNA virus that can lead to liver cirrhosis from which liver cancer develops. Hepatitis B is a DNA virus, and it acts as a direct carcinogen that causes liver cancer. For this reason, individuals with chronic HBV need to be screened for liver cancer even at younger ages.

It is important to understand that the immune-control phase of HBV infection is not static but is instead dynamic. For example, although around 75% of people in the immune control phase remain so, approximately one quarter will experience reactivation of HBV infection with progressive liver damage. This is called the immune escape phase.

Most are HBeAg negative, but some people revert to HBeAg positive chronic hepatitis B, underscoring that the immunecontrol phase should not be

considered a healthy carrier state. When we see patients, it is very difficult to predict who is going to remain in the immune-control state and who will revert or advance.

Therefore, serial testing is necessary during the immunecontrol state.

The determination of whether to initiate HBV therapy requires weighing the benefits against the risks. The key risks include the potential for adverse effects of the drug and development of drug resistance. By contrast, immediate benefits of the antiviral treatment would be suppression of HBV DNA and, hopefully, normalisation of ALT and liver function. Longterm benefits could include prevention of liver cirrhosis from this chronic infection and possibly the prevention of hepatoma. So, we have to (continued on page 16) Hepatitis SA Community News April 2012 • 5

The State of Play in Hepatitis C Hepatitis C virus: current concepts and future challenges Hepatitis C virus (HCV) is a global infection, with an estimated 170 million people affected. The geographical distribution is of some interest as it gives clues as to the history and transmission of the virus. It appears there are endemic strains, which have persisted in specific locations for many centuries.

These can be readily identified by viral genotype— for example, Genotype 2 is a strain which evolved in West Africa, while Genotype 6 evolved in South East Asia. In the last century, there have been iatrogenic outbreaks [outbreaks caused by a doctor or nurse’s mistake] leading to a massive spread of specific subtypes in countries such as Egypt (Genotype 4A). There was also global spread of certain strains, most notably Genotype 1 within Europe and North America, and more recently Genotype 3A in European intravenous drug user (IDU) populations.

HCV heterogeneity is huge, based on its capacity to develop mutation through its error-prone polymerase, and its very long co-evolutionary history with man. This is a major challenge for drug design and vaccines.

Clinically, genotypic information on the virus is of major importance in defining response to conventional as well as newer therapies.

Chronic HCV infection is now a leading cause of Hepatitis SA Community News 6 • April 2012

hepatic failure requiring transplantation in the west. Cirrhosis associated with HCV is also linked to the development of hepatocellular carcinoma, although unlike hepatitis B virus (HBV) this does not occur in pre-cirrhotic states. Chronic HCV infection is also associated with a number of extrahepatic diseases, linked to B cell hyper-activation and potentially also other serious conditions.

Acute infection and host defence Acute hepatitis C is actually a rare clinical presentation, despite the widespread nature of the virus. Typically, acute hepatitis is mild and may be clinically very subtle, with a delay of several weeks before a rise in alanine transaminase (ALT) is seen.

infection or infection with multiple strains.

A great deal of effort has been spent trying to define the mechanisms by which this robust immunity is mediated. Studies of cohorts such as women in Ireland and Germany, who were infected with contaminated blood products in Rhesus disease prevention programmes have been particularly useful here as the viral sequence and timing of infection were very well defined. From such studies, as well as studies of prospectively followed cohorts, the following features have emerged: 1.

Clearance of the virus is typically associated with a robust T cell response, comprising both CD4+ and CD8+ T cell responses, which is sustained over several weeks.

HCV infection may set up persistence in the majority of those infected; although interestingly, upto 30% may clear the virus and remain negative by polymerase chain reaction (PCR) tests of blood thereafter. This clearance typically occurs within the first 6 months of infection.

2.

A role of T lymphocytes in clearance of virus is supported by HLA association with outcome—including HLA B27, HLA B57 (both also protective in human immunodeficiency virus), HLA A3 and HLA DR11.

Some patients show a ‘yoyo’ course of infection, with partial control over this period, followed by persistence. This may be due in some cases to super-

3.

There is a major role for innate responses.

In particular, polymorphisms in the interferon lambda gene IL28B have been

strongly associated with outcome, as they are with treatment response (see below).

Image courtesy Dr Rufus Rajadurai (rufusrajadurai.wetpaint.com)

4.

Antibody responses do develop, although effective neutralization is limited by the rapid emergence of escape mutants in the envelope gene. Escape mutation also limits the efficacy of T cell responses.

5.

Progression to chronicity is associated with a marked attenuation of circulating cellular immune responses, although within liver tissue these may be retained and contribute to immune-mediated pathology.

Viral replication The development of successful treatments for HCV has relied upon efforts to understand the viral life cycle in vitro (in a lab) and in vivo (in a living organism).

While there remain no intact small animal models for replicating HCV (although partial mouse models exist), much progress has been made in in vitro culture model systems and with it has come a massive increase in our understanding of host–virus interactions.

Current HCV culture systems arose from the subgenomic replicons developed a decade ago. These required specific hepatocyte cell

lines (Huh-7 derived) and tissue culture adaptation of the subgenomic constructs.

A major breakthrough in this area came with the development of strains derived from a Japanese genotype 2 virus (JFH1), which can complete a full replication cycle and produce new infectious virus to good titres in vitro. These systems also rely on specific modified hepatocyte cell lines, which lack some innate signalling programmes.

These systems have revealed: 1.

The key cell entry factors for HCV, which include CD81, scavenger receptor class B1 (SRB1), low-density lipoprotein receptor (LDLR) and the tight junction-associated proteins human occludin (OCLN) and claudin-1 (CLDN1).

2.

The tight linkage between viral replication and modification of the lipid handling of the hepatocyte, including the generation of lipid droplets.

3.

The ability of the virus to evade host defence, including the significant impact of non structural protein 3 and 4A (NS3 and NS4A) in cleavage of the host signalling molecule Cardif/ (continued on next page) Hepatitis SA Community News April 2012 • 7

(from previous page)

Timeline for advances in understanding HCV. The shaded blocks represent rough timelines for the key steps in the fields of virology, immunology and therapy. The graph underneath indicates the approximate success rates for treatment success using the regimens indicated (for Genotype 1). Success rates vary with genotype as well as a number of other factors. mitochondrial antiviral signalling proteins (MAVS), disrupting early events in virus recognition.

4.

The impact of antivirals (including interferons) in vitro, including the development of escape mutations in response to selection pressure.

Vaccines No effective preventive vaccine for HCV exists currently. Given the problems of viral diversity described above, a Hepatitis SA Community News 8 • April 2012

conventional vaccine based on anti-envelope antibodies (as is effective in HBV infection) is unlikely to be easily generated.

Much effort has gone into the development of vaccines to stimulate cellular immunity. These still need to overcome the problem of viral diversity, but the hope is that such responses may target a sufficient range of viral proteins to limit escape mutations. Such vaccines are still in the early phase of development both for prevention and also as potential therapies. In the latter case, the published

data suggest only a limited or transient response to date, but diverse strategies are still under investigation.

Therapy Up until this year, standard therapy for HCV has been a combination of Pegylated Interferon alpha (PegIFNÄŽ) and Ribavirin. The actual mechanism of action of this combination is not clear, especially the role of Ribavirin, which has weak antiviral activity.

Overall, treatment has incrementally improved over

the last decade and PegIFNĮ/ Ribavirin can lead to a sustained virologic response (SVR) i.e. undetectable virus 6 months beyond the end of therapy, in 60–70% of patients with Genotypes 2 and 3 (after 6 months therapy), but in <50% of patients with Genotype 1 (requiring 12 months therapy).

It has long been known that a variety of factors contribute to outcome, including host genetics.

What was striking from recent studies using genomewide scans is the specific role of polymorphisms in IL28B. The actual role of this cytokine in vivo is not yet clear, indeed the impact of the polymorphism is also not fully understood.

However, genotyping for IL28B can provide additional information (along with other clinical factors such as viral load, fibrosis, comorbidities), which can aid stratification for therapy.

Trials of lambda interferon— which has a more restricted side-effect profile than the alpha form—are underway (reviewed in Ref. ).

New therapies with agents focusing on specific viral proteins such as protease and polymerase are now emerging. Two protease inhibitors, Telapravir and

Bocepravir, have now undergone extensive trials and have recently been licensed. Current treatment strategies require coadministration with PegIFNĮ/ Ribavirin—monotherapy is associated with the rapid emergence of drug resistance.

These regimens have shown improved efficacy compared with current standard of care (60–75% SVR), with potentially shorter treatment courses, although these are restricted to Genotype 1.

Interestingly, they also show good efficacy in previous unsuccessfully treated patients (60–65% SVR).

Combination therapy will be of major interest in the future and the possibility of interferon-free regimens has been raised, if multiple specific antivirals are sufficiently potent (see figure on previous page). Once again the circulating viral diversity and the capacity of the virus to adapt rapidly to new selective forces are major hurdles to overcome.

Future directions Further host genetics, so fruitful so far in this infection, may give important clues as to viral clearance mechanisms, while

further viral genetics will remain important to define mechanisms of resistance to therapy and vaccines. The explosion in next-generation sequencing should help both endeavours.

The efforts to optimize new treatment regimes as new antivirals emerge will occupy many in clinical research programmes. It will be important to learn from the HIV experience, where combination therapies have proven so successful—regimens which only emerged as a result of substantial collaborative effort. This may be aided by the further development of small animal models.

The future does look bright for new therapies for HCV although in this wave of enthusiasm it should not be forgotten that many in the global epidemic—both in the west and in the developing world—will not have ready access to such treatments in their current forms.

P. Klenerman P.K. Gupta Peter Medawar Building for Pathogen Research, University of Oxford For further information and for references, see http:// qjmed.oxfordjournals.org/ content/105/1/29.full.

This is an Open Access article distributed under the terms of the Creative Commons Attribution NonCommercial License (http://creativecommons.org/licenses/by-nc/3.0), which permits unrestricted noncommercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Hepatitis SA Community News April 2012 • 9

Calming the C • Information and support in a confidential, friendly environment • Speak to others who have had treatment • Partners, family and friends welcome Meet us fortnightly on Tuesdays, 12.30pm-2.30pm at Hepatitis SA, 3 Hackney Rd, Hackney To get more information, phone 8362 8443 or 1300 437 222.

The dates for the rest of 2012: Tuesday, 17 April

Tuesday, 10 July Tuesday, 24 July

Tuesday, 1 May Tuesday, 15 May Tuesday, 29 May

Tuesday, 7 August Tuesday, 21 August

Tuesday, 12 June Tuesday, 26 June

Tuesday, 4 September Tuesday, 18 September

Tuesday, 2 October Tuesday, 16 October Tuesday, 30 October Tuesday, 13 November Tuesday, 27 November Tuesday, 11 December

Friday, 27 April Friday, 25 May Friday, 22 June Friday, 27 July Friday, 24 August Friday, 28 September Friday, 26 October Friday, 23 November

Hepatitis SA Community News 10 • April 2012

Organ Donation Improvements Australian organ donors reached record high in 2011 Australia reached its highest ever number of organ donors in 2011, according to official figures released in January by the Australia and New Zealand Organ Donation Registry (ANZOD), and the Organ and Tissue Authority.

“A total of 337 Australians, who tragically lost their lives in 2011, saved or improved the lives of 1,001 people in need of an organ transplant. This is the highest annual total of deceased organ donors and transplant recipients in Australia’s history,” said Professor Graeme Russ, Chair of ANZOD. These figures show that each donor helped, on average, three other people.

This is especially relevant to people living with hepatitis C, as a significant number of Australians with severe HCV have relied on liver transplants to save their lives.

Australia’s 2011 donation outcome of 337 donors

State

translates to an increase of an additional 28 donors for the year, above the 2010 outcome of 309 donors. This is a 9% increase above the previous year.

The 2011 total of 1,001 transplant recipients translates to an increase of an additional 70 recipients for the year, above the 2010 outcome of 931 recipients.

This is an 8% increase above the previous year.

“2011 marked the second full year of implementation of the Australian Government’s national reform agenda to increase organ and tissue donation.

The 2011 outcomes lift Australia’s donor per million population rate to 14.9, an increase of 4.7 donors per million people since the commencement of the national reform agenda,” said Dr Jonathan Gillis, National Medical Director of the Organ and Tissue Authority.

Donors [2011] Population

Victoria

The majority of states reported increases in 2011, with the most significant rises being in Western Australia, the Northern Territory and Queensland. South Australia can be proud that it closely follows the ACT in having the greatest number of organ donors per million people.

The number of donors per state/territory for 2011 is as follows: For more information on organ donation and liver transplants, see issue 35 of this magazine, available online at http://issuu.com/ hepccsa/docs/hccn35.

DID YOU KNOW? As of January 2012, there were 174 Australians awaiting liver transplants.

See more at www. anzdata.org.au/anzod/v1/ waitinglist2012.html.

Donors per million people

107

5.547 million

19

New South Wales

77

7.239 million

11

Queensland

67

4.516 million

15

South Australia

35

1.645 million

21

Western Australia

33

2.296 million

14

ACT

8

0.359 million

23

Tasmania

6

0.508 million

12

Northern Territory

4

0.230 million

17 Hepatitis SA Community News April 2012 • 11

Adventures in Quality Improvement Over the last 18 months, Hepatitis SA has been working towards achieving Service Excellence accreditation at Certificate Level. At the beginning of this year, we had our external assessment. While we’re still awaiting the final report, the preliminary outcome of the assessment was extremely positive and provided an interesting and insightful overview of our organisation.

What is Service Excellence?

The Service Excellence Program (SEII) is a quality management accreditation program administered by the Department for Communities and Social Inclusion and SA Health. The standards are internationally recognised.

The aim of the program is to recognise and improve an organisation’s ability to provide high-quality services to consumers. The principles of the Service Excellence program reflect the ethos of community services and non-government organisations, focusing on responsible management and high quality outcomes for consumers.

These principles are: •

Clear direction and accountability

•

Social and ethical responsibility

•

A focus on customers

Hepatitis SA Community News 12 • April 2012

•

Evidence-based decisionmaking

•

Collaborative work practices

•

Valuing people and diversity

•

Continuous learning and innovation

How the program works To gain accreditation, an organisation completes an internal self-assessment, and is then externally assessed by accredited contractors. The assessors make recommendations for improvement in any areas where an organisation fails to meet the standards.

Once these improvements are made, accreditation is granted. Areas covered in the assessment include planning, financial management and sound governance, working well with other organisations, treating staff and volunteers fairly and inclusively, and ensuring positive service outcomes for consumers.

Board members, the Executive Officer, staff, volunteers, members and the users of our services can all have the confidence that, by gaining accreditation, our organisation has been assessed as having essential systems in place in key areas. Of course, this is also of benefit when it comes to seeking new or ongoing funding.

The external assessment itself provides an overview of the organisation from an objective, outside viewpoint.

It recognises strengths as well as identifying areas for improvement. Assessors are able to distinguish strengths and weaknesses that can be difficult to see when you’re working in an organisation day in, day out.

Involvement in a quality improvement program also brings consumer outcomes and continuous improvement into focus for management and staff, as well as providing access to quality improvement networks and resources.

Why is it worthwhile?

While it may seem like a lot of red-tape and hoopjumping, an externally reviewed quality improvement program like SEII does have a lot of benefits across all levels of an organisation like ours, as well as benefits for the people who use our services.

External Assessment The assessment was conducted at Hepatitis SA over two days by Penny Timbs and Rosie Bonnin for Quality Management Services SA. It included interviews with Board members, the Executive Officer, staff, volunteers,

stakeholders and partners, a review of client feedback and, of course, mountains of documentation.

Penny and Rosie’s experience and professionalism made the assessment a worthwhile and rewarding experience. We were impressed with their ability to quickly come to grips with our program areas and services, as well as their understanding of the philosophy and approach that underpins our work.

While there are two items that need to be addressed before we can fully meet the standards and be accredited, the draft assessment report highlighted many positives.

During interviews, our stakeholders commented on our flexibility, creativity and willingness to work in partnerships, as well the value of our resources to their work.

The assessors identified captialising on staff skills, passion, strong leadership and commitment to partnerships as particular strengths of the organisation. They also commented on the high quality of our reporting and our web and written resources.

Where to now?

Once we’ve received our final report and recommendations we have six months to make the necessary improvements, although as there are only two items to address we hope to achieve accreditation much sooner than this. Accreditation then lasts for three years before the process begins again!

Rose Magdalene Organisation Services

Photo CC Heather Blacklock (www.flickr.com/photos/hbart/2678281661)

Overall, the assessors characterised Hepatitis SA as a “strong, sustainable and wellmanaged” organisation. The outcome of the assessment has certainly made what was sometimes an arduous task (all together there are 87 assessment items to be completed!) worthwhile.

Hepatitis SA Community News April 2012 • 13

C Health Inspiration Workshops At the beginning of 2012, Hepatitis SA embarked on running the C Health Inspiration (CHI) workshops for 3 hours each week on six successive Thursday evenings. The workshops were designed specifically for people who are affected by hepatitis C, and took a

holistic practical approach to promoting a healthy way of living.

The workshops involved participants in discussions as well as providing practical demonstrations around many health maintenance issues in an interactive, fun and respectful environment. Workshop

activities included trying out various physical activities, understanding nutrition, cooking demonstrations, techniques for managing stress, alcohol and smoking, as well as information on hepatitis C treatment considerations, as one of the aims of the course was to assist participants to mentally and physically prepare for hepatitis C treatment.

The course was promoted through the HeplinkSA e-list, the Hepatitis SA Helpline and through the hepatitis C community nurses.

The CHI workshops attracted 10 participants from diverse back grounds.

The physical activities of the program were held in the Botanic Gardens.

Hepatitis SA Community News 14 â&#x20AC;˘ April 2012

In the first three weeks, group walking was led by Hepatitis SA avid walkers Nicole and Michelle. This walking exercise was really enjoyable, as we explored the Gardens and parts of the River Torrens where some of the participants had never been before.

In the last three weeks, participants were introduced to yoga sessions, which were conducted by a qualified yoga instructor. Once again, the yoga was conducted in Botanic Park. This was just brilliant, as this environment also helped us all feel tranquil and serene.

At the first workshop we discussed the hepatitis C virus, especially prevention and modes of transmission, as well as debunking some of the myths. Ninety minutes proved not enough time to cover such complex, interesting and intriguing topics.

In the second week our Hepatitis SA resident chef, Rose, presented some liverfriendly foods with a cooking demonstration. Rose showed participants how to make a

delicious and simple banana and orange smoothie, which has become a regular drink for some of the participants.

They were also able to make their own healthy pizzas.

In the third week, Ben Stewart, a PhD student from Adelaide University, discussed with participants his research into mental health and hepatitis C (see the article on this research in our last issue). Ben also provided participants with simple tips to help manage stress levels, as well as giving them various related website contacts if participants wished to explore this topic further. Ben is also conducting an evaluation of the course, which should be completed by the end of June.

In the fourth week, Dr Giordana Cross spoke to the participants about understanding nutrition. Dr Cross, as well as providing information on healthy eating, explored with participants the meaning of nutritional values on food packaging as well as food portionsâ&#x20AC;&#x201D;what these things really mean.

The last two weeks of the course were dedicated to the topic of hepatitis C treatment. Jeff Stewart, one of the community hepatitis C treatment nurses, provided a thorough education on this topic, including information on access, managing side effects, and what support people can expect to receive from the nurses while on treatment. Jeff also showed participants the medications used, as well as discussing future hepatitis C treatment options that are in the pipeline.

The workshops were greatly enjoyed by the participants and by me as the facilitator.

On the last day, one of the participants commented that she wished that the CHI workshops had been available to her when she had been on treatment, as she had not completed the treatment and felt that this was because she had not been well enough prepared both mentally or physically at the time.

Hepatitis SA hopes to run another CHI workshop series in the second half of 2012.

Mahdi Nor

Hepatitis SA Community News April 2012 â&#x20AC;˘ 15

Hep B Treatment Update (continued from page 5)

really consider the likelihood of adverse outcome without treatments and the potential for treatment to prevent them. Individually, we must consider the risk of cirrhosis and hepatocellular carcinoma (HCC) in the patient in the next 10-20 years.

The goal of hepatitis B treatment is to suppress HBV DNA and thereby prevent longterm negative clinical outcomes such as cirrhosis, HCC, and death. Thus, the primary clinical endpoint is a sustained reduction in serum HBV DNA to undetectable levels. In turn, this can lead to decreased or normalised ALT and improved liver histology. Among hepatitis B e antigen (HBeAg)-positive patients, an additional goal is HBeAg loss or seroconversion.

The ideal outcome would be conversion of HBsAg to antibody to surface antigen (anti-HBs); however, this is a very rare event.

Baseline HBV DNA level is an independent risk factor for the development of liver cirrhosis and HCC, underscoring the importance of carefully and continuously monitoring HBV DNA levels in order to evaluate the risk of adverse liver outcomes.

HBV treatment is often longterm and is lifelong for many individuals, particularly for HBeAg-negative individuals.

This is because HBeAgnegative individuals have no endpoint toward which

they are driving with therapy, except continuous or longterm durable suppression of HBV DNA level, which cannot be sustained longterm without ongoing treatment. It is important to be straightforward with patients so they understand this element of HBV treatment.

To summarise, all individuals with chronic HBV are potential treatment candidates, and the key question becomes when to treat. A patient who is not a treatment candidate right now can be a treatment candidate in the future because of changes in the level of HBV DNA, ALT, and/or the activity of disease as seen from liver histology. In addition, if new and improved treatments become available, it may alter whom we consider to be treatment candidates.

On 1 March 2012 the PBS amended restrictions for anti-viral medicines listed for the treatment of chronic hepatitis B to allow treatment in patients with cirrhosis with any detectable HBV DNA, and that elevated serum ALT levels not be required for these patients. This amendment to the restrictions is consistent with Australian and International guidelines and ensures that patients have access to the appropriate antiviral therapy, particularly those with cirrhosis of the liver.

Dr Tom Turnbull Oâ&#x20AC;&#x2122;Brien St General Practice

More information: www.gesa.org.au/professional. asp?cid=9&id=109 www.hepbhelp.org.au www.clinicaloptions.com/Hepatitis Hepatitis SA Community News 16 â&#x20AC;˘ April 2012

CLEAN NEEDLE PROGRAM now operating at Hepatitis SA 3 Hackney Rd, Hackney Monday to Friday, 9am-5pm Please ring the CNP doorbell at the front entrance.

This is a one-year trial, commencing 1 September, 2011.

Are you happy with your GP? If you are, we need to hear from you.* We are updating our Hep C-friendly GP list for metro and rural areas.

Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them.

Useful Contacts & Community Links Hepatitis SA

Clean Needle Programs

Provides information, education and support to people affected by hepatitis C and to health and community workers.

We offer free education sessions, printed information, telephone information and support, referrals and a clean needle program. Hepatitis SA also facilitates Calming the C - a support group for people affected by hepatitis C. Office Tel: (08) 8362 8443 Hepatitis SA Helpline: 1300 437 222 (cost of a local call anywhere in SA).

To find out about programs operating in SA, contact the Alcohol and Drug Information Service.

1300 131 340

MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services.

MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds.

(08) 8223 4566

Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic.

(08) 8223 5011

Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8218 0700

SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet.

(08) 8334 1699

Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program.

(08) 8447 8821

The Adelaide Dental Hospital has a specially funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call us at Hepatitis SA for a referral on (08) 8362 8443.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities.

(08) 8351 9031

Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia has now been taken over by Hepatitis SA: see the Hepatitis SA listing above.

SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers.

(08) 8334 1666

Aboriginal Health Council SA Peak body representing Aboriginal communitycontrolled health services and substance misuse services in SA. AHCSA is the â&#x20AC;&#x2DC;health voice â&#x20AC;&#x2122; for all Aboriginal people in SA, advocating for the community and supporting workers with appropriate Aboriginal health programs.

(08) 8273 7200

Are you interested in volunteering with Hepatitis SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepatitissa.asn.au and let us know.

We rely on volunteers for many of our vital services.

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