Hep Review 85 by The Hep Review magazine archive

HEP REVIEW Edition 85

WINTER

SEPT 2014

e s a e s i d e h t t o n n

Australia urged to subsidise revolutionary new drugs Walk a mile in my shoes: the darker side of hep C discrimination Treatment as prevention in Australian prisons

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HEP review magazine – Better prevention and self management, and improved to treatment Hep Review magazine Edition 85 access Sept 2014 1

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Hep C treatment as prevention: the Holy Grail or costly dream? “Reduce the pool of people who carry a virus and transmission is less likely.” This approach of treatment as prevention has shown success in reducing HIV rates. Now, in a world first, a trial in NSW prisons will determine if treatment as prevention can also be applied to reducing the rates of hep C transmission, writes Gideon Warhaft.

he term “treatment as prevention” came from the observation that antiretroviral treatment (ART) could help prevent the transmission of HIV. By reducing the pool of people living with the virus so that transmission is less likely, the application of treatment as prevention (or TasP) has shown success in reducing HIV rates. Now, in a world first, a trial in NSW prisons will determine if treatment as prevention can also be applied to reducing the rates of hepatitis C transmission. SToP-C is a collaborative project developed by Professor Greg Dore and Professor Andrew Lloyd of the University of NSW. The project’s partners include NSW Corrective Services, Justice Health, Hepatitis NSW, CRC, NSW Health, and Gilead Sciences, a US-based biotechnology company and supplier of the new direct acting antiviral (DAA) drugs central to the trial. The SToP-C project’s key goal is to investigate whether a significant reduction in hep C infections in NSW prisons is possible with a treatment as prevention approach. If successful, the project developers plan to roll out the SToP-C model in prisons across Australia. Stuart Loveday, CEO of Hepatitis NSW, claims the trial is “revolutionary” and could eventually make a significant impact on the hep C epidemic globally. “The plan is to clear hepatitis C really fast, so that you reduce the pool of people who have got the virus. That makes it harder to transmit hepatitis C, and if people are injecting among themselves

then the intention is to not have transmission at all, because everybody’s cleared it,” he explained. If the trial is successful, the beneficiaries are many: prisoners who have taken the treatment and cleared the virus; prisoners who have shared injecting equipment and avoided contracting the virus; prison staff, who are at less risk of accidental infection; and the wider community once prisoners are released. With around 30% of NSW prisoners with hep C and with no needle and syringe program inside, prisons are the obvious setting for the SToP-C trial. Phase 1 of the trial will be conducted in two maximum security facilities – Goulburn Correctional Centre and Lithgow Correctional Centre – to determine the “proof of principle” – that in a closed setting, treatment as prevention can reduce hep C transmission. Phase 2 will be set in several medium security facilities with more transient populations, looking at how the concept scales up into populations moving more freely between prison and the wider community. Phase 1, involving 450 prisoners in each of the two facilities, will begin following completion of the ethics committee review process with a surveillance stage and include half-yearly blood testing for hep C of all consenting prisoners, interviews on risk behaviours, harm reduction education sessions and fibroscans to assess liver disease. After one year, in one of the prisons, consenting prisoners with the hep C virus will begin the DAA treatment. Prisoners in the second

The trial is “revolutionary” and could eventually make a significant impact on the hep C epidemic globally Stuart Loveday, CEO Hepatitis NSW

www.hep.org.au

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correctional centre will be offered the same treatment between six and 12 months later. The impact of the DAA treatment at the two prisons will then be compared and the number of overall infections and new infections will be assessed. Why now? One reason for the timing of the SToP-C trial is the development of the nurse-led model of care for people with hep C, a program also developed by Professor Andrew Lloyd and introduced into NSW prisons in 2008. Without the hepatitis C expertise and health delivery capability that the nurse-led model of care provides, it would be difficult to manage such a trial in a prison setting. In some ways the SToP-C trial can be seen as directly leveraging off the nurse-led model of care. But the key factor for the timing of the SToP-C trial is the emergence of the DAA drug sofosbuvir, manufactured by Gilead Sciences. Unlike conventional interferon and ribavirin-based treatment, sofosbuvir has few side effects, is easy to take over a short period of time and has a cure rate of over 90%. The treatment, which lasts up to 12 weeks, requires people to take

just one or a few tablets per day. This contrasts with interferon, which must be injected, and ribavirin (and sometimes with either boceprevir or telaprevir as well), which can be up to 18 tablets a day. The treatment is also suitable for anybody with hep C, unlike previous drug regimes that could exclude people with cirrhosis, obesity or co-infections with HIV. Loveday argues that DAAs like sofosbuvir mark “the start of getting the Holy Grail of hepatitis C treatments.” Who pays? But wonder drugs like sofosbuvir do not come cheap: currently the cost is about USD $1,000 per tablet, or USD $84,000 for an entire course of treatment. Gilead Sciences is supplying the drugs at no cost for the trial, but for others with hep C the Australian Government will likely target who gets the drugs very carefully. “At the outset these treatments may not be be available for all,” says Loveday. “We’re advocating them to be available for all, but if the government puts the cost breaks on as they have in the past then they are likely to limit hepatitis C treatment to people with more advanced

Hep Review magazine

Edition 85

Sept 2014

feature liver disease. We think that it is wrong to limit treatment access to people with advanced liver disease because you’re actually waiting for people to get sicker before you offer them a chance for cure. And if you advance to cirrhosis, you have a higher chance of cancer development, even in the presence of cure. Why let people wait that long? It’s counter-intuitive. It’s bad public health policy.” Loveday also hopes the government will fund sofosbuvir long before the trial is finished and assessed, which is several years away. “This trial is around proof of concept; around proof of scalability. This is not around proving whether this drug works or not. We know that this drug works, and incredibly well. We hope the government is going to fund sofosbuvir long before this proof of concept comes out. They have to. They absolutely have to,” he said. Objections to the trial Not everybody supports the treatment as prevention concept, particularly when trialled within the prison system. For one thing, people might question why people in maximum security prison have access to the treatment – and therefore the chance to be cured of hep C – before the broader community. Loveday responds that this is a very special trial to determine proof of concept. “If it works in this setting then it will work in other settings as well,” he says, “and we should welcome it.” There is also the view that while Gilead Sciences are funding the SToP-C trial, they are being very tight about compassionate access to their drugs. “Some hep C treating physicians are pretty aggrieved that for their patients who are facing end-stage liver disease, they can’t access sofosbuvir,” says Loveday.

“Because the compassionate access program doesn’t exist in those terms.” Perhaps the biggest criticism is the potential conflict treatment as prevention has with prison harm minimisation programs. Professor Michael Levy from the Clinical School at the Australian National University argues that, while these new drugs offer great potential and are the “penicillin to hepatitis C”, the treatment as prevention model is an excuse to divest in prison-based harm reduction programs. “Treatment as prevention is all well and good given equal choices in the community where you can access harm minimisation entities,” Levy argues. “But when you’re in custody you don’t have that choice.” Levy questions why prison authorities have been so enthusiastic about the trial. “The reason is that it gives them an out for dealing with the politically difficult and contentious harm minimisation agenda,” he claims. “You can’t consider these new massive fantastic whizz bang treatments until you implement what we already know works. We invest in needle exchange in the community, but we don’t do it in prison. And so we concentrate people with the very highest risks inside, and then don’t offer them the highest level of safety.” Then there’s the question of whether prisoners who do become reinfected after taking the treatment will vote with their feet and not repeat the treatment. “They will say, ‘We do not want to be treated because we’ll only get reinfected’, says Levy. “The health economists have to seriously look at it. If it is $84,000, whatever the price is, it’s going to be devalued because it won’t work completely. It can’t operate in isolation from the rest of the community.”

If it’s proven viable then the project’s developers plan to develop the SToP-C program for prisons across Australia. And by the time the assessment is complete ... we can expect, through competition among pharmaceutical companies ... that the costs of the drugs will have substantially reduced ... ushering in a new era in dealing with hep C.

www.hep.org.au

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Professors Dore and Lloyd acknowledge Levy’s concerns, and welcome a robust discussion on the merits of the trial. “The best way to determine the potential impact of reinfection on the overall benefit of prisonbased HCV treatment as prevention is to evaluate it in the context of a well-designed research study such as SToP-C,” says Professor Dore. “We are also aware of the role of drug pricing to partly dictate public health benefits, and have therefore incorporated health economic evaluation. Furthermore, we believe that a combination of HCV treatment and NSPs may ultimately prove to be the most cost-effective prevention package for HCV in prisons.”

Ultimately the evaluation of the trial will include its cost effectiveness and its potential to be incorporated into public health policy, as well as the direct benefits to those in prison environments and the general community. If it’s proven viable then the project’s developers plan to develop the SToP-C program for prisons across Australia. And by the time the assessment is complete in several years, we can expect, through competition among pharmaceutical companies developing DDAs, that the costs of the drugs will have substantially reduced, potentially allowing their use for treatment for treatment’s sake and ushering in a new era in dealing with hep C. • Gideon Warhaft is a freelance journalist who writes for Of Substance and was formerly editor of User’s News. Also see page 22.

Hep Review magazine

Edition 85

Sept 2014

editorial

Assessing a viral hepatitis need

n 2010, the World Health Organization recognised viral hepatitis as a significant global health concern, and named World Hepatitis Day – falling on 28 July each year – as one of only four official, disease-specific world health days. In NSW, we celebrate World Hepatitis Day, as well as Hepatitis Awareness Week, which this year starts on World Hepatitis Day, Monday 28 July, and runs through to Sunday 3 August. This edition of Hep Review goes to print before the full list of events for NSW Hepatitis Awareness Week is finalised. To find out what events are happening, please go to our website – www.hep. org.au – or our Facebook page, or follow us on Twitter (@HepatitisNSW). The key health promotion message for the week is especially relevant given the emergence of new and improved treatment options: it concerns the importance of regular liver assessments for all people living with viral hepatitis.

If you are living with hep C, you should have your liver health assessed at least every 12 months. If you are living with hep B, you should have your liver health assessed at least every six months. You should be aware that these recommendations are a minimum – you should follow your doctor’s advice if they suggest more frequent assessments. The good news is that regular liver health assessment no longer involves biopsy but, instead, is usually based on blood tests and a non-invasive fibroscan. For more detail on what is involved in a regular liver health assessment, see our report on page 43.

www.hep.org.au

In other advocacy news, we have recently been encouraging community members to lodge submissions (as well as us writing our own submission) to the Pharmaceutical Benefits Advisory Committee (PBAC) inquiry into the first of the next wave of hep C treatments to seek approval in Australia. These new drugs – simeprevir and sofosbuvir – offer the prospect of shorter and simpler treatment, with fewer side effects and higher cure rates. If they are approved, they could help to start a revolution in how we deal with the hep C epidemic in Australia. But such a revolution will be possible only if all people currently living with hep C are given equal access to treatment.

Hopefully, by the time you read this, the PBAC will have given its approval for simeprevir and sofosbuvir, and it will be then up to the Government to decide whether, and how, these drugs are listed on the Pharmaceutical Benefits Scheme (PBS). Hepatitis NSW will continue to campaign for these drugs, and the ones that follow, to be listed on the PBS, and for all people affected by hep C to have access to them on an equal basis. As we lead up to the PBS decision, there will be a variety of ways in which you can be involved in this campaign. To stay in touch, check out our website, Facebook or Twitter, or sign up to The Champion e-newsletter by sending an email to campaigns@hep.org.au with your name, or going to http://tinyurl.com/l6uwctm Together, we can fight to ensure that all Australians living with chronic hep C have access to the best possible drugs. • Alastair Lawrie, Hepatitis NSW. Also see page 20.

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“I have received your valued publication for many years. It keeps me up to date with options for treatment. It helps me emotionally as I read the stories of others.” RP, Tasmania.

Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories. We want the voice of people with hepatitis to ring loudly through the magazine. Why not share your story? Stories attract a $50 gift card payment. Your name doesn’t have to be included in the magazine. Stories should be about 400 words or 800 words, handwritten or typed. • Further conditions apply. To submit your story, please send to Paul Harvey, Hepatitis NSW, PO Box 432, Darlinghurst NSW 1300 or pharvey@ hep.org.au or 0412 885 201.

Australian news 8 World news 13 Features Hep C treatment as prevention: the Holy Grail or costly dream? 2 Eliminating hep C: acknowledging an ambitious but achievable goal 22 Australia urged to subsidise revolutionary new drugs as baby boomer crisis hits 24 Online campaign to lift awareness of hep C 26 Hep C and HIV co-infection: improved treatment outlook 28 C – the person not the disease 35 Walk a mile in my shoes: consider the darker side of hep C discrimination 36 Crimea crisis hits methadone hard 42 The importance of regular liver assessment 43 Hep C and ageing: a community brief 46 Going viral – saluting one year of successful development work 49 My story Grant’s story: waiting for a new wave 20 Danella’s story: a secret in the family 32 My story: Some valuable words of advice 41 Regular features Editorial – Assessing a viral hepatitis need 6 Hep Chef – Persian spiced beef with dates and cinnamon 48 Hello Hepatitis Infoline – To tell or not to tell 50 Reader survey form 51 Membership form 57 Research updates 58 Clinical comment 61 Pharmaceutical treatment for hep C 62 Complementary medicine 63 Support and information services 64

Lismore liver clinic We provide a free public clinic specialising in hepatitis C and B. The clinic is run by nurses working with specialist doctors to provide assessment, information and treatment. If you have hepatitis C or B please come and see us. We can provide free access to a dietician for nutritional support and also to a counsellor to Image / Mark Fuller assist you prepare emotionally for treatment and identify the social supports you will require. Please get in touch with us on 6620 7539

Hep Review magazine

Edition 85

Sept 2014

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news

GP visits dive ahead of co-payment New South Wales – Medical practices are already reporting plunging demand for GP consultations, with one surgery in western Sydney reporting a 50% drop in appointments. AMA president Steve Hambleton said that the practice, in Mount Druitt, resorted to sending out SMS messages to patients to inform them that the Coalition’s $7 co-payment for GP visits is not slated for introduction until July next year. The measure, described by the Government as “a modest price signal”, is designed to dissuade patients from claiming Medicare benefits for unnecessary consultations. Labor frontbencher Matt Thistlethwaite said he had received anecdotal reports from GPs in his southern Sydney electorate of Kingsford Smith “of patients cancelling appointments, particularly pensioners who are confused”. OECD figures show Australians averaged 6.9 doctor consultations in 2012, which Labor says is “bang on” the average for developed nations. • Abridged from theaustralian.com.au (22 May 2014) http://tinyurl.com/l75by6v

women’s prisons ‘awash’ in drugs New South Wales – Women’s prisons in NSW are awash with illicit drugs that are fuelling “drug parties’’ and fatal overdoses, an inquest has revealed. The death in custody of Tracy Brannigan from a heroin overdose exposes the staggering drug abuse within prisons, the inquest heard. Officers at Dillwynia Correctional Centre had placed Brannigan, 41, on “sanctions’’ for her continual drug use, yet were unable to stop her having a “drug party’’ in a high-needs cell that she shared with another known drug user, the inquest heard. Brannigan had previously overdosed three times in prison, yet freely obtained drugs, which are often thrown over the back fence of the semi-rural prison near Windsor. Public Interest Advocacy Centre solicitor Jane Leibowitz, who is representing Brannigan’s family, says that better drug detection, better staff training and a stronger focus on therapeutic programs for people dependent on drugs are preferable to custodial sentences. The security manager of Dillwynia, Leanne O’Toole, said “drugs were more prevalent” among female prisoners than male prisoners and she estimated that 75% of inmates “have some sort of substance dependence”. • Abridged from smh.com.au (11 June 2014) http://tinyurl.com/ofd4nzh

Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today. • For more info, please contact Katherine McQuillan on 6330 5866 or 0407 523 838

www.hep.org.au

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Prisoner explosion INPUT INTO Hep B and may mean more jails C Strategies BEGUN New South Wales – Two large prisons would need to be built each year in NSW to house an exploding prison population, according to new figures recently released. An unprecedented rise in the prison population in the past year will worsen if mandatory sentences for drunken assaults are introduced, former Director of Public Prosecutions Nicholas Cowdery said. The prison population rose by 13% to reach a record high of 10,917 in March 2014, a NSW Bureau of Crime Statistics and Research (BOCSAR) report found.

New South Wales – Hepatitis NSW has been busy in recent months, providing input into the draft National Hepatitis B and C Strategies, and the draft National Aboriginal and Torres Strait Islander Blood-Borne Virus and Sexually Transmissible Infections Strategy. These documents set the agenda which will be pursued by the Commonwealth Government to address viral hepatitis. They cover the years 2014-2017, a period when – we hope – hep C treatment will be revolutionised. Hepatitis NSW has worked closely with Hepatitis Australia, and other State and Territory hepatitis organisations, in providing input into all three strategies. We all hope that the new strategies are finalised and released by World Hepatitis Day, 28 July.

Even without mandatory sentencing, the prison population will soar a further 17% this year, creating 2,000 new prisoners who would fill Parklea Correctional Centre twice. BOCSAR director Don Weatherburn said the rapid rise was “a matter of significant concern’’. The BOCSAR report found that crime was decreasing in NSW yet more people were being arrested, prisoners were remaining in jail for longer and more offenders were receiving prison sentences for offences such as driving while disqualified. A Corrective Services NSW spokesman said there was the capability to deal with increasing prison numbers by adjusting the use of space in existing facilities and reviewing bed occupancy.

Hepatitis NSW is also still waiting for the release of the next NSW Hepatitis C Strategy and the (first) NSW Hepatitis B Strategy. These documents have been under development for some time, and are needed to help set the priorities for viral hepatitis within NSW. We are optimistic that these documents will be finalised and released soon, hopefully on World Hepatitis Day on 28 July. • Hepatitis NSW

• Abridged from smh.com.au (15 May 2014) http://tinyurl.com/pbfxl5l Ed: The prison environment involves much higher risks for hep C transmission compared to the general community.

St Vincent’s viral hepatitis clinic St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a Fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Dianne How Chow, phone: 8382 3607 or email: dhowchow@stvincents.com.au Image courtesy of Google Images

Hep Review magazine

Edition 85

Sept 2014

news

$13.75m Hep C settlement

Drug trade pandemic say experts

Victoria – The women involved in a class action against drug-dependent anaesthetist James Latham Peters have agreed in principle to settle the case for $13.75 million.

Victoria – The growing multibillion-dollar trade of illicit drugs into and within Australia has reached “pandemic” proportions, destroying Australian lives at unprecedented rates, authorities say.

Advertisements will be taken out alerting any other women of their possible right to a share of the settlement money. It is expected up to 60 women will be eligible for a payout.

An illicit drug arrest was made every six minutes and a seizure every seven minutes, with authorities seizing about $2.7 billion of drugs over the 2012-2013 year.

There had originally been 50 women suing Peters, Croydon Day Surgery, Dr Mark Schulberg (who hired Peters as an anaesthetist at the clinic and who operated the clinic at the time) and the Australian Health Practitioners Regulation Agency for damages for pain and suffering, economic loss and medical expenses.

Victoria Police Deputy Commissioner Graham Ashton said the drugs being discovered by authorities were “only the tip of the iceberg”.

The class action covered women who had contracted hep C during pregnancy terminations at the Croydon Day Surgery between June 2008 and December 2009 when Peters was the anaesthetist. Peters, 64, was jailed last year for 14 years with a non-parole period of 10 years, after pleading guilty to 55 counts of negligently causing serious injury to the patients by injecting himself with prefilled syringes of fentanyl – an opioid used in general anaesthesia – in theatre at the surgery. He then administered the remaining drug to the patients as they underwent pregnancy terminations

“We’re never going to police our way out of the drug problem in Victoria. In fact, we’ve really only got the tip of the iceberg and that’s all we’ll ever have,” he said. The spread of the highly addictive street drug ice (crystal meth), was singled out as one of the most troubling patterns to emerge from the report. “[Ice presents] a kind of drug problem that we haven’t seen previously. The crime consequences, the health consequences – particularly in rural Victoria – is really significant and it’s something that we haven’t seen before,” said Mr Ashton. • Abridged from theage.com.au (29 April 2014) http://tinyurl.com/ojl9zlz

• Abridged from theage.com.au (28 April 2014) http://tinyurl.com/oejn55o

Nepean region liver clinic We provide a range of services for persons and families affected by hepatitis B and C. We assist with the assessment and treatment of viral hepatitis. We have a Fibroscan machine. Satellite nursing clinics are held at Lithgow and Blue Mountains hospitals, including opioid substitution clinics. Services are also provided at Mt Druitt Aboriginal Medical Service. We can also provide possible access to clinical trials. • For more information, contact Vince on 4734 3466

www.hep.org.au

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news

Adelaide team’s vaccine win

Australian hep deaths surpass AIDS

South Australia – Researchers claim they have made a significant breakthrough in tackling hep C through using a new type of DNA vaccine which protects against viruses and could even provide a cure in five years.

Australia – Deaths from viral hepatitis B and C have surpassed AIDS in many countries, including Australia, according to an analysis of the 2010 Global Burden of Disease (GBD) study.

Adelaide University’s Professor Eric Gowans says the vaccine has already had positive results in animals, with human trials involving about 40 people with hep C scheduled to start in 2015. “DNA vaccines in general have enormous potential, but haven’t worked very well in large animals and in human patients,” he said. “They work very nicely in mice and we’ve developed a technique that makes a DNA vaccine very much more effective in large animals.” The DNA vaccine stimulates the body’s immune response and combines with the white blood cells to kill HIV or hep C cells. The vaccine is currently designed to treat patients who already have hep C, but Professor Gowans says it is likely it could be used as a preventative vaccine in the next five years. “I don’t want to be too optimistic, but I think when we do the clinical trial next year, we can begin to work out how best to take it forward from there.” • Abridged from abc.net.au (26 Mar 2014) http://tinyurl.com/ptpvfgl

The analysis was conducted by Dr Benjamin Cowie and Ms Jennifer MacLachlan from the University of Melbourne and Melbourne Health. “Liver cancer is the fastest-increasing cause of cancer deaths in Australia, increasing each year by 5%. In 2014 there were an estimated 1500 deaths from liver cancer. The predominant cause is chronic viral hepatitis,” Dr Cowie said. Dr Cowie said additional resources were needed to prevent and treat hepatitis B and C. “The Commonwealth Government has recently committed to funding initiatives to improve access to testing and treatment for people from priority populations living with hep B in Australia, which is a great step forward,” he said. GBD is an ongoing study funded by the Bill and Melinda Gates Foundation. It is the largest systematic effort to describe the global distribution and causes of an array of major diseases, injuries and health risk factors. GBD 2010 has collated estimates of 291 diseases and injuries, and 1160 conditions that followed, to identify the causes of human death worldwide. • Abridged from melbourne.edu (17 April 2014) http://tinyurl.com/q9558sh

Do you live in Sydney’s Eastern Suburbs and have hepatitis? Are you looking for treatment? The Prince of Wales Hospital Gastrointestinal and Liver Unit, in Randwick, Sydney, specialises in treating a broad range of liver-related conditions, with a focus on hepatitis B and C. The nursing staff co-ordinate all aspects of patient care for people with chronic hepatitis including: education, antiviral therapy, follow-up, medical appointments, interdisciplinary referrals and Fibroscan assessments. We also participate in a range of clinical trials offering new and innovative treatments to our patients. Other health care professionals that complement our service include a psychiatrist,

clinical psychologist, dietician, social worker, and clinical research physicians. There are daily outpatient medical clinics so waiting times for patients are minimal. For more information, phone Shona on 9382 3800 or email shona. fletcher@sesiahs. health.nsw.gov.au

Hep Review magazine

Edition 85

Sept 2014

news

Federal Health Budget threats

NEW investment TO COUNTER viral hep

Australia –The Federal Budget announced by the Treasurer, MP Joe Hockey, on May 13, proposed a range of significant changes to health policies and funding in Australia, including:

Australia – The Australian Government is investing $22.45 million over four years for prevention programs to help address increasing rates of HIV, hep B and hep C.

• Introducing a new $7 fee to see a GP, or have blood or other pathology tests done (from 1 July 2015).

Federal Health Minister Peter Dutton said that in 2012 more than 230,000 Australians had chronic hep C infection. More than 207,000 people have hep B.

• Increasing the fee to have a prescription filled by $5 for the general community, or 80c for concession cardholders (from 1 January 2015). • Limiting future increases in funding to the states for public hospitals, dental services and preventative health. • Increasing the threshold for the Medicare Safety Net and the Pharmaceutical Benefits Safety Net (i.e. a person needs to spend more before the Safety Net covers your payments). Obviously, all of these measures have the potential to significantly, and negatively, affect people living with, or at risk of, hepatitis B and C. It even has the potential to discourage people from getting vaccinated for hep B, tested for both hepatitis B and C, and being able to appropriately manage and treat their viral hepatitis. At the time of going to print it was unclear which, if any, of these measures would be passed in the Senate, where the Government does not have a majority.

“These diseases are preventable and it is critical we strengthen our efforts, support health service providers and tailor our prevention messages so that they actually connect with the people most at risk,” he said. Mr Dutton said the Government’s program includes: • $5.1 million for needle and syringe programmes, particularly in rural and regional areas. • $4.6 million to increase uptake of testing and treatment for hep B among priority populations. “Australia has been a leader in minimising the spread of these infections and the new investment will build on this work,” Mr Dutton said. • (22 April 2014) Commonwelth Government media release.

• Hepatitis NSW

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world news

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us approves new overdose antidote

US – A new medical device that could save thousands of lives by preventing opioid overdoses has been approved by the US Food and Drug Administration. The handheld auto-injector is designed for family and caregivers to administer a single dose of a drug called naloxone, which rapidly reverses the effects of heroin and other opioids.

Vertex drops hep C as sales fall US – Vertex Pharmaceuticals, which reported more than US$1 billion in sales of its hep C drug, Incivek, in 2012, announced recently that it will not invest any more money on research and development of new treatments for the disease. Vertex said that it will license an experimental hep C drug called VX-135 to Alios BioPharma. Revenue from Incivek dropped almost 90% in the first quarter as the drug was supplanted by newer treatments and Vertex sold its overseas marketing rights. In April Gilead Sciences Inc. said sales of its hep C drug Sovaldi totalled $2.27 billion in its first full quarter on the market. Sovaldi was granted US approval in December 2013 and European Union approval in January 2014. • Abridged from hepatitiscnewdrugs.blogspot. com.au (1 May 2014) http://tinyurl.com/ nbgfxan

Called Evzio, the emergency treatment works much like the well-known EpiPen – an epinephrine auto-injector for serious allergic reactions – because it is injected into the muscle and does not require training, making it more user-friendly. Once injected, the naloxone stops heroin and other opioids from slowing a person’s breathing down to the point that it stops. Naloxone has long been used in ambulances and hospitals, but Evzio now allows non-medical personnel to carry the drug on their person or to store it in a medicine cabinet. New York Attorney General Eric Schneiderman said that using naloxone allows victims to be brought back “from the brink of death and buys more time to get to a hospital”. Noting that there were more than 2000 opioid overdoses in New York in 2011, Schneiderman said: “It isn’t every day that we can announce that we will save lives.” • Abridged from cnn.com (4 April 2014) http:// tinyurl.com/p4ysa2s

Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.

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Kirketon Road Centre (KRC): Above the Darlinghurst Fire Station, entrance on Victoria Street, Darlinghurst 2010 Phone: (02) 9360-2766

There’s a lot you need to know about hepatitis C - like the fact it can be treated!

Edition 85

Sept 2014

world news

Russia approves simeprevir

Simeprevir approved for adults in europe

Russia – The Russian Ministry of Health approved simeprevir as treatment for chronic hep C genotype 1 infection, Medivir AB reported recently.

Europe – Medivir announced that simeprevir has been granted marketing authorisation by the European Commission for the treatment of adults with hep C genotype 1 and 4 in combination with other drugs.

According to Medivir AB, simeprevir – an NS3/4A protease inhibitor – was indicated for use in combination with pegylated interferon-alfa and ribavirin in adult patients with compensated liver disease who have failed previous interferon therapy with or without ribavirin, or who are treatment naive. “The Russian approval is another important event for simeprevir and provides the hep C patients in Russia with a new HCV treatment,” Maris Hartmanis, chief executive officer of Medivir AB, said in a press release. Russia is the first country within Europe, the Middle East and Africa to be granted access to the drug; it had the third-greatest HCV prevalence based on 2011 World Health Organisation (WHO) data, according to the release.

This marketing authorisation represents a significant milestone in the development of new triple therapy hep C treatment options for genotype 1 and 4 patients. It also includes simeprevir as part of an all oral 12-week interferon-free regimen with or without ribavirin, in genotype 1 or 4 patients, who are intolerant to or ineligible for IFN treatment. The EC approval for simeprevir is based on various clinical trials including QUEST-1, QUEST-2, PROMISE and COSMOS. • Abridged from marketwatch.com (16 May 2014) http://tinyurl.com/pnotvo6

• Abridged from healio.com (28 March 2014) http://tinyurl.com/orwmu5m

Royal Prince Alfred Hospital liver clinic Royal Prince Alfred Hospital, Camperdown, Sydney, offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials. Image, source unknown.

The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.

www.hep.org.au

Do you want to know more? Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910

world news

AbbVie combo gets Merck combination euro priority review hep C drugs shine Europe – AbbVie has filed for approval of its interferon-free regimen for hep C in the EU and says the European Medicines Agency has agreed to fast-track its review. The all-oral therapy is ABT-450/ritonavir, coformulated with ombitasvir (ABT-267) in a oncedaily dose, and given alongside dasabuvir (ABT333) which is dosed twice daily. AbbVie is seeking approval of the therapy for patients with the hard-to-treat hep C genotype 1. The group recently reported encouraging phase III data showing that 92% of genotype 1 patients and those with established liver disease had a sustained virologic response at 12 weeks. While many other oral HCV therapies have reached or are nearing the market, AbbVie has largely taken its own path to developing an alternative to injectable interferon-based regimens, shunning studies combining its own drugs with candidates from other drugmakers.

UK – A two-drug combination being tested by Merck to treat hep C cured 98% of previously untreated patients without cirrhosis. Results of the study, called C-Worthy, were presented at the annual meeting of the European Association for the Study of the Liver (EASL). In the Phase II study, 43 of 44 patients treated with 100 milligrams of MK-5172 and 50 mg of MK-8742 once a day for 12 weeks achieved sustained virologic response (SVR), which is considered as a person being cured. The study also included results of patients treated with the two Merck drugs plus the older drug ribavirin for both 12 weeks and eight weeks. But all eyes will be on the ribavirin-free results as several companies race to produce all-oral treatment regimens that include neither ribavirin nor interferon, which are both used in current treatments and cause flu-like symptoms, anemia and other side effects. The Merck anti-viral medicines, which hamper the virus’s ability to replicate in different ways, were tested in patients who had the genotype 1 form of the virus – the most prevalent and considered the most difficult to treat.

• Abridged from pmlive.com (10 May 2014) http://tinyurl.com/nfhdcvj

• Abridged from reuters.com (10 April 2014) http://tinyurl.com/p68b7lk

Liverpool Hospital liver clinic We offer multidisciplinary specialist services for people in South Western Sydney who have hep B, hep C or liver cancer and other liver disease. Interpreters and multicultural support are available for people who attend our clinic. We offer Fibroscan® to assess your liver for damage without a liver biopsy. After assessment you’ll receive a detailed discussion about the best treatment options for you. We also offer services for pregnant women with hep B or C. We offer all new available therapies for hep C as well as access to new therapies through our participation in clinical trials.

Our DVD about hep C treatment, and our DVDs and brochures about hep B, may help you better understand these conditions. These are also available through YouTube: http:// tinyurl.com/nsyj2e9 • For more information, phone: 02 8738 4074 or email: gastroliver.liverpool@sswahs.nsw. gov.au

Hep Review magazine

Edition 85

Sept 2014

world news

debate over access to pricey us drugs

us Medicare now okays new drugs

US – Simple math shows the challenge facing US taxpayers, patients and insurers after the launch late last year of two expensive new drugs to treat hep C. If all three million people with hep C in the United States were treated with the drugs, at an average cost of US$100,000 per person, the amount spent for all prescription drugs in the country would double, from about $300 billion a year to more than $600 billion.

US – Walter Bianco, an Arizona man denied access to new drugs to cure his hep C, is to get the costly medications after all.

That prospect has inspired an unusually blunt public debate: Should such treatments – one drug costs $1000 a pill – be limited to the sickest patients, or should the drugs be immediately available to everyone? And should those in taxpayer-funded programs have the same access as those who pay? “These are, at their core, ethical fights,” said Arthur Caplan, director of the bioethics division at New York University Langone Medical Center. Tony Keck, director of Medicaid in South Carolina, where the treatments are covered case by case, said: “The more definitive the cure, the closer we are to asking, ‘What’s the value of a human life?’ ” A panel from the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America called the drugs “an advance” and said they should be the preferred treatments for most of those infected with the virus. • Abridged from washingtonpost.com (1 May 2014) http://tinyurl.com/o2h7bzj

After Kaiser Health News and NPR described his plight, federal Medicare officials announced that they would look into the case. Bianco’s doctor recently got word that Medicare’s earlier denials had been reversed – an unusually fast turnaround for the agency. Bianco, whose liver has been severely damaged by the hep C, said Medicare’s reversal was “great news for me, and hopefully for many others, since a precedent has been set now”. In a statement, Medicare officials indicated that the new policy will apply broadly to hep C patients whose doctors prescribe the combined use of the two drugs because they meet certain criteria laid out in January by the Infectious Diseases Society of America and the American Association for the Study of Liver Diseases. Those guidelines recommend the combined use of the two drugs in patients with advanced liver disease who have failed to be cured by earlier drug regimens. Medicare officials said that beneficiaries “are required to have access to needed therapies” if they have demonstrated “medical necessity” and have “medically accepted indications” for the treatment. • Abridged from tucsonsentinel.com (16 May 2014) http://tinyurl.com/pq9mxtj

The multidisciplinary Liver Clinic at St George Hospital, Kogarah, Sydney, supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials. For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 or lisa.dowdell@sesiahs. health.nsw.gov.au

www.hep.org.au

Image via Google Images

St George Hospital liver clinic

world news

treatment in prison Could Break hep C US – The hep C epidemic is getting attention, thanks to the sudden availability of costly new treatments that can cure almost everyone with this potentially deadly liver infection. But there’s one big piece of the problem that almost no one talks about: the concentration of hep C in prisons and jails. One out of six US inmates has hep C, compared to something like one in 100 in the general population. About 400,000 of the 2.3 million American inmates are hep C positive. If all inmates with hep C were to get treatment it would cost at least US$33 billion for the medication alone, according to the authors of an analysis in the New England Journal of Medicine. But that’s not the whole story. A lot more people cycle through US correctional facilities and jails every year; that number is something like 10 million. If only half of those got the new medications, it would cost about $76 billion. But total spending for medical care in 44 state prison systems was less than $10 billion. And that’s getting to be a strain on state budgets. It’s not clear how federal and state correctional facilities will avoid paying for hep C treatment for a substantial and growing proportion of inmates. That’s because US Supreme Court rulings have made it very clear that inmates are constitutionally entitled to receive the “community standard of care.”

“That’s not Cadillac care,” says Allen, who used to be the chief medical officer of Rhode Island’s prison system. “It’s what you’d expect to get minimally from a community health centre if you were on Medicaid. But if you have a serious medical problem and there’s an effective or potentially life-saving treatment, the courts are going to expect adequate care” for prison inmates. And if prisons don’t start providing the costly new treatments, Allen predicts that inmates will start to sue for access to it. “I predict they will prevail if the only argument against it is that [treatment] is too expensive,” he says. Rich, Allen and co-author Dr. Brie Williams of the University of California San Francisco argue that only the federal government can make the difference, along the lines of the 14-year-old Ryan White Care Act, which has allocated billions of dollars for HIV treatment. Allen says only the federal government has the clout to negotiate lower prices for hep C drugs for correctional facilities and other government programs. The model is so-called preferential pricing of HIV and hep C drugs for developing nations. “I would urge the drug companies to recognise some sense of corporate citizenship here and negotiate a lower price with government payers,” Allen says. “But we can’t be naïve about it. We live in a free-market system.” • Abridged from commonhealth.wbur.org (14 May 2014) http://tinyurl.com/nncjws

Paediatric viral hepatitis clinic

Hep B and hep C can be passed on from pregnant mother to baby and occurs in unknown numbers in children.

Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and, in some cases, treatment of children with these infections. Assessment and regular follow-up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life. For information, contact Brooke Andersen at the Children’s Hospital Westmead, Sydney, on 9845 3989 or brooke.andersen@health.nsw.gov.au

Image via Google Images

Hep Review magazine

Edition 85

Sept 2014

bits & pieces

Q&A:

What is a hepatologist?

A hepatologist is a specialist in the study and management of the liver, the biliary system, the gallbladder and the pancreas. Hepatology was traditionally a sub-specialty of gastroenterology, but recent advances in the understanding of this subspecialty have made it a field of its own. Hepatologists deal most frequently with viral hepatitis and diseases related to alcohol. • Abridged from healio.com (20 Mar 2014) http://tinyurl.com/oz2sr7o For more information, call the Hepatitis Infoline on 1800 803 990

HEPATITIS

INFOLINE INFO, SUPPORT, RE FERRAL

1800 803 990 Online access Our online version of Hep Review can be found via www.issuu.com/hepatitisnsw and contains live links to the various sources shown in blue text at the end of articles. They’re another great reason to go online for your Hep Review magazine. You can also view the magazine via www.hep.org.au

Storr Liver Unit

Westmead & Blacktown Hospitals

Our unit provides comprehensive specialist outpatient and inpatient services for people with all liver diseases, including viral hepatitis B and C, fatty liver and liver cancer. These clinics provide assessment and treatment for patients with liver diseases, including the option of participating in various clinical trials of newer therapies. Other services provided include FibroScan, IL28 testing, a clinical psychologist and dietician. For further information contact the Storr Unit Administration – 9845 7705 or the specialist nurses on… Hep B - Susan Holdaway 9845 5627 and Jasmin Canete 9845 6034 Hep C - Susan Holdaway 9845 5627, Jasmin Canete 9845 6034 or Sarah Freitag-Finau 9845 4559 Liver Cancer - Jeannette Valdivia 9845 7419

www.hep.org.au

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You can now chat online instantly wi th one of our Infoline wo rkers via www.hep. org.au Just click the blue Live Support butto n at the top of the sit e, answer some confidential questio ns for our stats an d you’re able to star t chatting. There’s no need to sign in or download any ne w software. Simple! You can use the on line chat service between 9am to 5p m weekdays (exc ept Thursdays when it is available from 15pm). The service provid es free informatio n, support and referra l to anyone in NSW .

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Live Well – HELPING YOU MAXIMISE YOUR HEALTH

live well

The goal of our Live Well program is to help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and how to make the healthcare system work better for you. We welcome anyone who is living with hep C and is looking for ways to improve their health and well-being. Our group workshops are free, confidential and suitable for everyone’s needs. We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers. • Duration: One weeknight each week for six weeks. • Who: You and other people with hep C. • Where: Surry Hills (near Central Station, Sydney).

Are you living with hep C and looking for ways to maximise your health? live well can help

Come join group, meet others who Comeour join our group, meet others who have hephave C and get information that can help you improve your hep C and get information that can helphealth you and wellbeing. improve your health and wellbeing. Interested?

Contact Fungi 9332 1853 Contact the on Hepatitis Infoline on or P: 1800 803 990 or fjaboon@hep.org.au

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Edition 85

Sept 2014

my story

Grant’s story: waiting for a new wave

rant was diagnosed with hep C in 1995 at Manly Hospital. Despite the seriousness of the diagnosis, he was “stoked” because at least he didn’t have HIV. He knew about bloodborne viruses and he knew there was treatment available but felt he didn’t need to address it immediately. He was young and he had genotype 3 – which was easier to treat and had a high success rate – so he put his hep C to the back of his mind. When a relationship with a new partner started getting serious they visited a doctor together, mostly to reassure her that there would be no risk involved in having unprotected sex. They were given the okay and went on to have a daughter, who was born in 2007. In 2008 some issues about access to his daughter arose because of his hep C status. He thought he’d miss out on seeing his daughter if he couldn’t get rid of his hep C. While he knew there was no chance of infecting his daughter, he felt contaminated by it at a time when everything else had started to go well for him. Guilt set in and it affected his self-esteem and confidence. Grant decided this would be a good time to get rid of the virus so it wasn’t an issue one way or the other. Despite having contracted his hep C only in the 1990s, Grant’s liver was not in good shape. He had a fibroscan score of 15 and very high ALT levels so treatment was recommended. Despite knowing that some people had had bad experiences of hep C treatment, Grant had high expectations of his treatment being successful. This may have been because he is a naturally optimistic person – also, he has also been a high achiever in sport, reaching representative status in three sports as a teenager.

Nathan Gibbs / Flickr

Success was in his blood and he was sure some of the “invincibility” that had led him to contracting hep C in the first place was surely going to help him through it.

www.hep.org.au

One month into treatment, Grant’s ALT (liver function) was going in the wrong direction – his liver function was getting worse. Despite this early indication, he persisted with the treatment but it didn’t improve. He was devastated to learn that the treatment wasn’t working on him. It was more than 10 years after his diagnosis and Grant had finally come to terms with with the realisation that he was living with hep C. Grant ended up in hospital after an accident and contracted a staph infection while in the hospital. He was on high-strength antibiotics for a long time and was unable to do any exercise. As a result his health is now quite fragile and his liver is worse than ever. The hep C is having more of an impact every day. He is tired all the time.

But now there are new drugs which will possibly be available soon in Australia and Grant feels it would be great to get rid of his hep C. When the new drugs boceprevir and telaprevir were announced last year, Grant thought these might hold the future to his health. He found out they were only for the treatment of genotype 1 and was disheartened, losing interest in clearing his hep C. Grant has turned his life around in the last few years. He’s now a Community Advocate with the C me Project at Hepatitis NSW. He’s also the “hero” for the Equal Treatment Access campaign which is working toward getting new hep C drugs sofosbuvir and simeprevir listed on the Pharmaceutical Benefits Scheme (see page six). Like the other 230,000 Australians living with hep C, he’s hopeful the new drugs will enable him to clear hep C once and for all, so he can get healthy again and be the father he wants to be. • Grant, NSW

feature

Community urges approval of simeprevir and sofosbuvir The hep C breakthrough 230,000 Australians have waited for is here, writes David Pieper.

hroughout June, C me Community Advocates across NSW have led the way to EQUAL TREATMENT ACCESS. They’ve been making submissions to the Pharmaceutical Benefits Advisory Committee (PBAC) on why we need new hep C treatment drugs simeprevir and sofosbuvir to be available in Australia. The hero of the campaign is Grant, a C me Community Advocate (who’s story is featured, left). Dozens of regular members of Hepatitis NSW have joined in, pleaded the case and citing their own personal experience in trying to cure hep C – many without success and some with significant side effects. Sofosbuvir offers the possibility of much more effective cure for chronic hep C infection. Used in combination with interferon and ribavirin, phase III trials have achieved over 90% cure rates within 12 weeks, with minimal side effects. Some people are even able to use these treatments without interferon.

The PBAC is an independent expert body appointed by the Australian Government. Its members include doctors, health professionals, health economists and consumer representatives. Its primary role is to recommend new medicines for listing on the PBS (Pharmaceutical Benefits Scheme) based on their effectiveness, safety and cost effectiveness. PBAC will compile all the consumer submissions about simeprevir and sofosbuvir into a report to be considered at their July meeting. Everyone who made a submission and told of their personal experiences will have an influence on the outcome. It’s important that the PBAC recieve a significant number of submissions and we believe that this campaign has made a good impact on the committee. PBAC has undertaken to provide feedback on the community consultation. We’ll report on that feedback in the next edition of our e-newsletter, The Champion.

The C me Project at Hepatitis NSW is all about community action on hep C so we provided printed guidance for everyone wanting to make a submission and a URL short cut to take you directly to the submission page of the PBAC website. For people without access to the internet we provided handwritten submission forms. Hepatitis NSW also made a submission and we encouraged our partners in the blood-borne virus sector to make their own submission or write a letter of support for ours.

This is just the first burst in the campaign for EQUAL TREATMENT ACCESS which is expected to run through 2014 and 2015. If you’d like to get involved in campaigning for simeprevir and sofosbuvir, email campaigns@hep.org.au or contact David Pieper on 02 9332 1853. You can find more information about simeprevir and sofosbuvir at www.hep.org.au/c-me • David Pieper, Hepatitis NSW

EQUAL TREATMENT ACCESS Imagine living with chronic hep C and knowing that there were two new treatments that could cure you in just 12 weeks – you could be cured by September - BUT you can’t get these life-changing treatments because even though they are in use in the USA and Europe, they’re not available under the Australian Pharmaceutical Benefits Scheme. Want more info? Just go to...

http://www.hep.org.au/c-me

EQUAL TREATMENT ACCESS The hep C breakthrough 230,000 Australians have waited for is here.

What are we waiting for? Hep Review magazine

Edition 85

Sept 2014

feature

Eliminating hep C – acknowledging an ambitious but achievable goal Thanks to new easier-to-use drugs, “treatment as prevention” is gaining credence in the hep C field, writes Margaret Hellard.

epatitis C is a hidden epidemic affecting 170 million people worldwide. Hep C kills nearly 700 Australians every year, mostly from chronic liver failure and liver cancer, and costs more than $78.9 million in diagnosis and treatment. About 230,000 Australians have chronic hep C infection and 6600 to 13,200 new infections occur every year. It’s a blood-borne virus, so people who inject drugs have a high prevalence of the infection and the greatest risk of transmission. Although uncommon, it can also be transmitted through blood-to-blood contact during sex, sharing razors, or using unsterile medical or tattooing equipment. In Australia the two main hep C genotypes are genotypes 1 and 3, occurring in about 55% and 35%-40% of people of people infected with hep C respectively. Genotype, however, is not known to significantly impact on the severity of illness. Hep C can be treated with a combination of drugs, including pegylated interferon and ribavirin together, with or without boceprevir or telaprevir. Few Australians have undergone treatment (less than 3000 people in 2012) and the idea that hep C could be eradicated has long seemed a distant possibility. But ongoing advances in hep C treatment give reason for optimism. New therapies New hep C treatments – known as direct-acting antiviral (DAA) therapies – are likely to require only six to 12 weeks of treatment, have minimal side effects and cure rates of more than 90%, including those with advanced liver disease or those who have previously failed therapy. The United States Food and Drug Administration and the European Medicines Agency have already approved sofosbuvir, a highly effective DAA, to treat people with hep C genotypes 2 and 3. The manufacturer is seeking similar approval in Australia through the Therapeutic Goods Administration and seeks listing on the Pharmaceutical Benefits Scheme, which would

www.hep.org.au

make it available for $36.90 – or $6 for concession cardholders. The Australian Government would pay the remaining cost. Although sofosbuvir is still being used in combination with pegylated interferon to treat hep C genotype 1 (the most common subtype), pegylated-free regimes may be available in the next 12 months. Patients will then need only to take a tablet once or twice a day. Treatment as prevention Thanks to DAAs, treatment as prevention – a concept more commonly associated with HIV – is gaining credence in the hep C field.

Put simply, if someone with hep C is treated and cured, the individual benefits by avoiding chronic liver disease and the broader community also benefits because the patient can no longer transmit the virus to another person. Modelling undertaken both internationally and within Australia suggests that a treatment-asprevention approach using DAAs, combined with effective harm-reduction strategies – such as needle and syringe and methadone programs – could markedly reduce hep C prevalence over the next 15 years – and eventually eliminate the virus. While it will be vital that people with advanced liver disease have early access to DAAs, the success of treatment-as-prevention hinges on the treatment of people who currently transmit the hep C virus, regardless of the severity of their disease. Current modelling suggests that in Melbourne, the number of people infected with hep C would halve if we treated 40 per 1000 people who inject drugs over the next 15 years. This will mean treating 500 to 1000 people per year, which might not seem many, but will pose a considerable economic challenge for government; the likely cost of a course of non-interferon DAA treatment is $80,000–$100,000.

feature Despite the cost of this initial investment – more than $50 million per year – there are enormous long-term benefits to the individual, as well as it being highly cost effective for the community. Overcoming the barriers A key issue for the treatment-as-prevention approach is engaging effectively with the group at most risk of contracting hep C. There is no guarantee that people who inject drugs will be willing to engage in early therapy; many have more immediate health and social problems. In addition, many people who inject drugs have encountered stigma and discrimination in past dealings with health services and health professionals, and might reasonably be sceptical of a treatment-as-prevention approach that appears to primarily benefit others. It will be important to locate treatment services in easily accessible community locations, and staff them with people experienced in working with drug users; those who can attend to their complex health needs. Another concern is that the health resources needed for treatment could be diverted from successful prevention and harm reduction programs, notably needle and syringe programs and opiate substitution therapy. These programs have successfully reduced the risk of transmission of hep C and other blood-borne viruses such as HIV, as well as reducing other injecting-related harms. Eliminating hep C is an ambitious but achievable goal; the new DAAs will kickstart this process, but it needs a strategic approach, in partnership with people who have or are at risk of hep C infection. We need a sustained and multi-pronged approach – and the time to start is now.

Abridged from theconversation.com (28 March 2014) http://tinyurl.com/p59p5sy Ed: It is not yet known if the Australian Government will list the new drugs on the Pharmaceutical Benefits Scheme and give broad access to them for all people with hep C. Also see page 2. Hep Review magazine

Edition 85

Sept 2014

David, Western Sydney / Exposition by RAF

• Margaret Hellard is Adjunct Professor, Monash University, and Associate Director and Head, Centre for Population Health at Burnet Institute

feature

Aust urged to subsidise revolutionary new drugs as baby boomer crisis hits

Public health experts say effective new drugs to treat hep C should be subsidised in Australia to avert a looming strain on the national health system.

ustralians who contracted hep C decades ago are only now starting to develop terminal liver disease at an alarming rate. More than half of Australia’s 250,000 people with hep C are baby boomers who contracted the virus back in the 1960s and 1970s, when experimental drug taking was rampant. Most of these patients have, so far, remained in good health, but after 30 or more years living with the virus, the number getting liver cancer or waiting for liver transplants is now dramatically on the rise – leaping from 10% to 40% in the past five years. It is a trend which could put pressure on healthcare resources. Until recently, treatments have had such low success rates – and brutal side effects – that even doctors have advised patients to wait for a better treatment to come along, hopefully before liver failure claims them first.

“Liver cancer associated with hep C is the most rapidly growing cancer in the Western world,” Professor McCaughan says. “So 40-50% of liver cancer is hep C; 40-50% of adults requiring liver transplant, also hep C.” Professor McCaughan and his colleagues are lobbying hard to have the new therapy subsidised in Australia, starting with the most vulnerable patients. “If you walk in the door with chronic hep C ... you should be able to get these medications at some stage within the next one to five years,” he says. “The problem at the moment is that the cost of these drugs in Europe and the United States is extraordinarily high – $90,000 to $100,000 or even more.” Hep C is also such a stigmatised disease that there are no high-profile lobby groups and people affected themselves tend to keep their condition a secret.

Public health researcher Jack Wallace is one of those with hep C who have not treated the disease, hoping they are not among the one in three who will die of liver failure.

Mr Wallace says such is the lack of understanding of the disease that few Australians even realise that most people with the virus are middle class citizens.

“I’ve been putting off treatment for the last 20 years because with the current treatments, the side effects of them are too hard for me to contemplate actually doing treatment,” he says.

“Once you disclose you’ve got hep C, you are publicly disclosing the fact that you’ve injected drugs, and injecting drugs in Australia is a shameful thing to admit,” he says.

However, one of Australia’s leading hepatologists, Professor Geoff McCaughan, says that a new revolutionary” treatment is being rolled out in the United States and Europe. “We are talking about 95% cure rates with one or two tablets a day, essentially without any side effects,” he says. The drugs have arrived at a time when the first generation of people with hep C in Australia – the baby boomers – are starting to succumb to liver failure.

www.hep.org.au

“It’s really interesting – it’s been 30 years since I last injected drugs, and most of the people that I interact with on a daily basis would have absolutely no idea of my history.” Professor McCaughan says people with hepatitis come from all walks of life. “They’re lawyers, some of them are doctors, some of them are bankers, musicians, tradesmen – you know, the late ’60s and ’70s was a pretty wild time,” he says. • Abridged from abc.net.au (15 Mar 2014) http://tinyurl.com/q3hhwdg

melfoody / Flickr

feature

Factsheet: Liver Functi o

Hepatitis factsheets

n Tests

For more in formation ab out anything the Hepatitis in this factsh Infoline on 18 eet, phone 00 803 990 or go to www.he p.org.au

Monitoring your liver – it’s all about keeping tabs on your own liver health and doing what you can to minimise liver damage.

Role of the liv er

The role of the liver is to keep the body’s co nutrients from mplex interna our digestive l chemistry in system (in the processes the balance. It tak form of carboh m so they ca es raw ydrates, prote n be stored an and quantity. in, amino acids d sent to differ , etc) and ent parts of ou r body in the right form The liver regu lates the level of sugars in ou fats in our sto r blood and ma mach). It also nufactures bil helps remove e (which brea toxins, drugs ks down and hormones This brief expla from our blood nation does the stream. liver little justic biochemical e - it actually functions. Pe carries out ov rhaps it is be like a lizard’s er 1,500 comp cause the liv tail, it can rejuv er is so impo lex rtant, that up enate itself. to a certain po int,

What are liv er

Want to know more about how your GP monitors your liver? We’ve recently updated our Liver Function Tests factsheet.

function test s?

A liver function test (LFT) is a blood test tha properly. The t gives an ind test is also ve ication of wh ry useful to se ether the liver sluggish bile e if there is ac is functioning flow (cholesta tive damage sis). in the liver (h epatitis) or Liver function tests measur e the amount of possible da of particular mage to liver chemicals in cells - damage the blood. Th a more corre that can be ca is gives a ga ct term for a uge used by many liver test would things includ actually be a ing HCV. So liver dysfunc tion test. It’s important to remember that diagnosis history, phys of liver disea ical examina se depends on tion, laborato a combinatio ultrasound sc ry testing, bio n of patient ans. Diagnosis psy and some of hepatitis C times imaging usually also studies such involves antib as ody tests or PC People reading R tests. this page shou ld kee n

Hep Review magazine

To view the complete four-page factsheet and our range of 40 other factsheets please go to http://tinyurl.com/3f2gx2p

Edition 85

Sept 2014

feature

Online campaign to lift awareness of hep C NSW Health has created an interactive online party experience to give those aged 18 to 24 a hard-hitting message about the risks of contracting hep C.

SW Health, in association with Hepatitis NSW and media company VICE, has launched a compelling online campaign aimed at raising awareness of and dispelling common perceptions about hep C transmission, prevention, risks and what it is like to live with the disease. Dr Jo Mitchell, Director for the NSW Centre for Population Health, said that hep C is a significant public health issue and is one of the most commonly reported notifiable diseases in Australia. It is the biggest driver of demand for liver transplantation. “It’s now been 25 years since hep C was first formally identified. The disease affects more than 230,000 Australians, but fewer than 2% receive treatment each year. In 2012, 3290 people in NSW were diagnosed with hep C,” Dr Mitchell said.

The NSW Health hepatitis C campaign Enter the Party video aims to make people aged 18 to 24 years aware about the transmission and prevention of hep C. The awardwinning Enter the Party video was first launched online in 2012. It was recognised at the Global Festival of Media held in Rome, Italy, for its innovative approach to tackling the blood-borne virus transmission risks associated with injecting drug use. “In a party environment, people are faced with choices. This campaign is about keeping those choices safe so that one night of fun doesn’t have lifelong consequences,” Dr Mitchell said. “Young people often think they are invincible. Hep C is spread through blood to blood contact and primarily affects the liver.

media channels. It was launched alongside a documentary produced by VICE Media entitled Life is Different Now. A Frank Discussion about Living with Hep C. Opi is one of four young people living with hep C who features in the documentary, openly discussing her diagnosis, personal experience and the stigma associated with the disease. “I was diagnosed a few years ago. It is important for me to share my experience to help people think twice before making decisions which could put them at risk of contracting hep C,” Opi said. Hepatitis NSW Chief Executive Officer Stuart Loveday said the documentary was developed to support the compelling NSW Health Enter the Party campaign and is an important resource in educating people about behaviours which could put them at risk of contracting hep C, encouraging them to consider the consequences. “Hep C is both preventable and curable in most cases. We hope this online campaign will help challenge the stigma associated with the disease, and support people living with hep C to have their liver health assessed and to consider treatment. “The documentary is compelling viewing. It covers the ordinary aspects of living with hep C including testing, diagnosis, disclosure, stigma, discrimination, relationships, treatment and management of the condition,” Mr Loveday said. VICE, who produced the documentary in association with NSW Health, welcomed the opportunity to be involved in the project. “Our aim was to highlight this disease to people aged 18 to 24. We felt that humanising the issue through firsthand experiences giving insight into the lives, reactions, relationships, treatment, and hopes for the future of people diagnosed with hep C was a powerful way to do this,” said VICE editor Royce Akers.

“Contracting this disease can occur from something as simple as shaving a friend’s head or using a DIY tattoo or piercing kit. You could be left with more than just a bad tattoo,” she said.

It is estimated that 90,000 people in NSW are living with hep C. The majority of infections are acquired through sharing or re-using unsterile drug injecting equipment.

The online video campaign targets young people 18 to 24 years of age through social

Hep C can also be transmitted through other blood to blood contact such as contaminated

www.hep.org.au

Image via NSW Ministry of Health website

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equipment used in home tattooing and body piercing, sharing razors or toothbrushes and, in rare cases, unprotected sexual activity where blood is present.

NSW Health supports several projects to reduce the spread of infectious diseases such as hep C, including the Needle and Syringe Program, a successful evidence-based public health program.

NSW was the first state to introduce a Needle and Syringe Program, in 1986. This has helped to prevent thousands of people sharing injecting equipment, in turn reducing the spread of diseases such as HIV and hep C among people who inject drugs and in the wider community. The Enter the Party video and the Life is Different Now. A Frank Discussion about Living with Hep C documentary can be viewed at: http://hepc.health.nsw.gov.au/ • Abridged from a NSW Ministry of Health media release (5 May 2014).

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Hep C and hiv co-infection: improved treatment outlook An estimated 13% of Australians living with HIV also have hep C. Paul Kidd provides an update on issues for people living with hep C and HIV co-infection.

ep C treatment remains challenging to take, with a frustratingly low rate of success. The good news is it looks like that’s about to change – and in a big way. Hep C treatments are advancing rapidly, with new treatments promising much greater efficacy with fewer side effects. The basics An estimated 13% of Australians living with HIV are also living with hep C. While most people with hep C in Australia acquired it through injecting drug use, in PLHIV there is clear evidence that sexual transmission is a major issue.

People with HIV are less likely to spontaneously clear their hep C infection, and may progress more quickly to hep C-related illness, including liver fibrosis, cirrhosis and liver cancer.

Among people with HIV+HCV co-infection, response rates are poorer still, with only about 40% achieving SVR in clinical trials. Co-infected people with lower CD4 counts and higher HCV viral loads tend to have poorer response rates to hep C treatment, as do those with more advanced fibrosis (damage to the liver) or cirrhosis (scarring of the liver). Currently available treatments Hep C treatment is available on the PBS, and continues to be based on pegylated interferon (which is injected weekly) and ribavirin (RVB), which is taken as tablets twice daily. Last year, two new anti-HCV drugs were listed on the PBS – the first direct-acting antivirals (DAAs) for hep C. Unlike pegylated interferon and ribavirin, boceprevir (Victrelis) and telaprevir (Incivo) are protease inhibitors that directly target HCV replication in much the same way that HIV treatments target HIV replication. However, they are used only for people with genotype 1 infection.

Unlike HIV, hep C is curable, but only about 1% to 2% of the more than 200,000 Australians living with chronic infection receive treatment each year. Concern about side effects, the length of treatment (three to 12 months) and the relatively low rate of treatment success are believed to cause this low uptake. The objective of hep C treatment is a sustained virological response (SVR), which is considered to be a permanent cure for hep C infection. For more than a decade, the standard treatment has been pegylated interferon and ribavirin (PegIFN/RBV). However, only about 60% of Australians undergoing PegIFN/RBV treatment achieve SVR. Treatment response rates differ according to which of the six hep C genotypes the individual is infected with: most Australians living with hep C have genotype 1 (54%) or genotype 3 (37%). As well as being the most prevalent, genotype 1 has traditionally been more difficult to treat.

www.hep.org.au

Used in combination with PegIFN/RBV, these drugs reduce the length of treatment (typically 24 weeks instead of 48) and increase the chances of success: a study of telaprevir plus PEG-RBV in HIV+HCV co-infected people with genotype 1 produced an SVR rate of 74%, compared with 45% for those only taking PegIFN/RBV.

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Similarly, a study of boceprevir plus PegIFN/RBV in co-infected people with genotype 1 produced an SVR rate of 61% for the triple therapy, compared with 27% for PegIFN/RBV alone. While these drugs represent a significant step forward in hep C treatment, they still fall short of the ideal of an easily taken, highly effective treatment. Both telaprevir and boceprevir cause problematic side effects in a significant number of people – on top of the known side effects of PegIFN/RBV.

Sofosbuvir Gilead Sciences’ sofosbuvir (Sovaldi) is an NS5B polymerase inhibitor which has performed well in clinical trials, both in combination with PegIFN/ RBV and in all-oral combinations. It has been approved for use in the US since December. Two interferon-free studies in people with HIV+HCV co-infection are underway, and results from one of these (PHOTON-1) were presented in November at the Liver Meeting 2013 in Washington, DC.

The good news is that there are more than a dozen second-generation DAAs at various stages of development, including two that have been approved for use overseas, and if current clinical trial results are sustained, these are likely to herald a watershed in the treatment of hep C.

Participants in this open-label trial took 400mg sofosbuvir once daily, plus 1000–1200mg ribavirin in two doses, for 24 weeks. All participants with genotype 1 were treatment-naive, while those with genotype 2 or 3 included treatment-naive and treatment-experienced. Twelve weeks after finishing treatment, response rates were 76%, 88% and 67% for genotypes 1, 2 and 3 respectively. The treatment was very well tolerated, with considerably fewer side effects than PegIFN/RBV therapy.

Treatments in the pipeline As with HIV treatments, the new hep C treatments come in a variety of drug classes, based on the different ways they target the virus. The major classes are NS3/4A protease inhibitors; NS5A; and NS5B polymerase inhibitors. As with HIV, it’s likely that drugs from different classes will be combined for maximum impact against the virus, although we’re only just starting to get a sense of which drugs go with which.

Ledipasvir Ledipasvir is a NS5A polymerase inhibitor, also being developed by Gilead. Results were presented in Boston from a phase-2 study examining a 12-week, all-oral, combination of sofosbuvir, ledipasvir, and either ribavirin or GS-9669, in traditionally very difficult-to-treat patients: treatment-experienced, genotype 1 with advanced fibrosis or cirrhosis.

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Remy Snippe / Flickr

An impressive 100% of participants in this small trial achieved SVR. Importantly, those taking the ribavirinfree combination did not experience the anaemia typically caused by that drug. No information is available yet on the use of this drug in HIV coinfected people.

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Simeprevir

ABT-450 / ABT-267 / ABT-333

Also approved in the US late last year, Janssen’s simeprevir (Olysio) is a NS3/4A protease inhibitor – the same class as telaprevir and boceprevir. As with telaprevir, it is given in combination with PegIFN/RBV for 12 weeks, followed by between 12 and 36 weeks of standard PegIFN/RBV therapy. Results from a series of trials in hep C mono-infected patients show a response rate of about 80% in previously untreated people.

These are a series of drugs being developed by AbbVie – an NS3/4A protease inhibitor and an NS5A inhibitor and NS5B polymerase inhibitor. ABT-450 is boosted with the HIV drug ritonavir (ABT-450/r) to improve blood levels.

A study of simeprevir in HIV+HCV co-infected people was presented at the 14th European AIDS Conference in Brussels last year. That study enrolled 106 HIV-positive, hep C-co-infected participants with genotype 1, all of whom were treated with simeprevir plus PegIFN/RBV for 12 weeks, followed by either 12 or 36 weeks of PegIFN/RBV alone. Twelve weeks after finishing treatment, 74% of participants had cleared the virus, rising to 79% for those who had previously not been treated. Most people (89%) in this trial were able to complete treatment after 24 weeks, and among that group of rapid responders, the cure rate was 87%. Daclatasvir / Asunaprevir / BMS-791325 Bristol-Myers Squibb is developing a fixed-dose combination (single pill) regimen containing three hep C treatments from different classes, designed to be used as an interferon- and ribavirinfree treatment, which will be active against all genotypes. Results from a phase-2 study were presented at the Liver Meeting 2013 which showed a 92% SVR rate in previously untreated mono-infected patients after just 12 weeks of treatment. A separate study using only daclatasvir (NS5A inhibitor) and asunaprevir (NS3/4a protease inhibitor) had an 85% SVR rate. There’s no data yet on the use of this combination in co-infected people.

www.hep.org.au

In the AVIATOR phase-2 study, genotype 1 monoinfected participants received an interferon-free regimen on ABT- 450/r, ABT-267 and/or ABT333, with or without ribavirin. At 24 weeks posttreatment, 98% of treatment-naive participants, and 93% of those who had taken PegIFN/RBV treatment before but not responded, achieved SVR. Faldaprevir This is an NS3/4A protease inhibitor in development by pharmaceutical company Boehringer Ingelheim. Preliminary results from a study of faldaprevir in people co-infected with HIV were released at the Liver Meeting 2013. The 310 participants in the ongoing StartVERSO4 trial are taking 120mg or 240mg faldaprevir plus PegIFN/ RBV for 12 or 24 weeks, followed by PegIFN/RBV alone for a total 48 weeks treatment. The preliminary analysis looked at the percentage of participants who had undetectable hep C viral load at four weeks post-treatment – a later analysis will identify the percentage who achieved the 12-week SVR that is considered a cure. Overall, 74% of participants in this study achieved this early indicator of treatment success. Where to from here? As with any report on forthcoming treatments, it’s important to note that not every drug that does well in clinical trials eventually finds its way to pharmacy shelves. But the clear message is that hep C treatment is undergoing a revolution that echoes – and maybe even surpasses – the HIV treatment revolution of the late 1990s. New

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treatments for hep C are on the way, and they promise much better efficacy, shorter treatment durations and fewer side effects than existing treatments. But there are still plenty of challenges. In the short term, it’s likely the first new drugs to become available will be used in combination with PegIFN/ RBV, particularly for people with genotype 1. Many people are understandably hesitant about taking drugs that can have debilitating side effects, so interferon-free and ribavirin-free regimens are under active development and will hopefully become available in Australia within a few years. With combination therapy likely to become the mainstay of hep C treatment, we need good evidence of which drugs work best with which. Drug companies are keen to promote their own fixed-drug combinations rather than the mix-andmatch approach that’s common in HIV treatment. Australians who are co-infected will be keen to see these new drugs approved as soon as possible, but at this stage we have no indication of how long that will take. A further challenge will be the cost of new hep C treatments. Simeprevir and sofosbuvir have US price tags of $66,000 and $84,000 respectively for a 12week course, plus the cost of the PegIFN/RBV or other drugs: that’s $1000 per tablet (per day of treatment) for sofosbuvir alone. For Australians, that means the drug companies will have to show their drugs represent value for money before they will be listed on the PBS, and that may take some time. For people in poorer countries, drug companies are going to need to be convinced of the need to lower prices and/ or allow generic versions of their drugs to be produced.

Despite these challenges, the overall picture is a very encouraging one, particularly for HIV+HCV co-infected people, for whom hep C is an unwelcome extra health burden on top of HIV, and who may have failed to respond to hep C treatment in the past or put it off for fear of side effects. The day is coming when practically everyone with hep C can be cured, and it looks like it may not be far off. What you can do right now Everyone should know how to prevent hep C transmission. Hep C is spread through infected blood but can also be sexually transmitted. Ask your PLHIV organisation or doctor. Start HIV treatment. Going on HIV treatment has been shown to significantly reduce the risk of serious liver disease in people co-infected with HIV+HCV. If you get your medical care from a GP, ask for a referral to see a hep C specialist. Seek the specialist’s advice about whether you should consider treatment now or wait for newer drugs to become available. Make healthy lifestyle changes. Cutting back on alcohol, getting exercise and eating a healthy and varied diet can help support your liver and reduce hep C disease progression. Get in touch with your state hepatitis council or PLHIV organisation for more info and support. Contact details are on the NAPWHA website. • Paul Kidd is a Victorian-based writer and activist. Abridged from napwa.org.au (1 March 2014) http://tinyurl.com/oh3ftbv

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Danella’s story: A Secret in the Family

hat happens when your father has been keeping his hep C secret, and then his liver

fails?

Dealing with a family illness is a very stressful time, and can potentially be detrimental to many aspects of your life. But following that little light you look to in times of despair, which I call hope, is often all you need to stay strong and get through. My dad is living with hep C-related liver cirrhosis, and so my family has recently been through many ups and downs. Last year was a particularly horrible year for Dad, and it all began when he started taking the combination treatment of interferon and ribavirin. He had a bad reaction to the medication and in January was rushed to intensive care at a nearby hospital as his kidneys and liver were failing. Until this all happened, most of the family didn’t know the extent of his illness. It wasn’t until a couple of weeks into his taking the medication that Dad explained to me that he was very exhausted, and that he had to take 12 tablets a day and inject himself once a week. He did not, however, tell me he had hep C. Still, to this day, the words have never come out of his mouth and I have found out through doctors.

I would have to put the reason he has never told me down to the fact he is ashamed – as there is such a negative stigma surrounding hep C – and that he didn’t want to scare me. Dad is a very proud man, and I believe his outlook says that there is no room for illness in his life. He spent four days in intensive care and was then moved into a Hepatobiliary and Colorectal ward. He caught golden staph while in hospital, and had to take a rather large course of antibiotics. Despite this, Dad was still doing well, and the doctors were expecting he could come home early February. On the Thursday, though, Dad was taken back into intensive care, as he had suffered from an internal bleed and collapsed on the hospital floor. The doctors explained that he experienced a bleed from his oesophageal varices due to portal

www.hep.org.au

hypertension. From my understanding, this means that because of the extent of damage to his liver, it could not cope with the amount of blood trying to filter through it. The pressure in the veins became too much, and they ultimately burst. The doctors performed an endoscopy, and placed rubber bands around the areas the oesophagus was bleeding from. Dad recovered quite well from this procedure, and was taken off sedation 24 hours later. He was very confused at first, and said some very weird stuff. The doctors had warned us about this confusion, which is often a symptom of liver failure. But he recovered quickly from this phase, and was finally discharged from hospital after nearly five long weeks. Luckily for me, the week after Dad came home was my 21st birthday. It was so special having him there for it, considering how sick he was, and everything he had been through. The hospital wanted Dad to go back in for a week to undergo a number of tests which have to be completed in order to become a candidate on the liver transplant list. As he hates hospital so much, he told them he was not going to stay there, but would come in for whatever tests they needed done at any time. He was very adamant that he was not going to need a liver transplant, and the reason the doctors were doing these tests was in case things became dramatically worse. I think the idea of a transplant terrified him. Fortunately, after he completed the tests and met with the transplant psychologists and social workers, he was okay with the idea. After six weeks of being home, Dad had what the doctors described as a ‘torrential bleed’ on 28 March. It happened at our house, and I found him on the bathroom floor sitting in a huge pile of blood, slowly losing consciousness. I immediately called for an ambulance and the man on the phone told me I had to try and keep him awake and conscious. Thankfully, an ambulance came within five minutes and took over. The crew cut off his clothes, put an oxygen mask over his face, and rushed him to the nearest hospital. That day will never leave my memory.

TIA / Flickr

my story

They took him to a different hospital this time, since it was closer and he needed blood as soon as possible. I went to the hospital and was able to quickly see Dad before they performed an endoscopy to determine where he was bleeding from. By then they had given him a blood transfusion and he was quite stable. I told him that I loved him and that he had to stay strong for the family. Overnight, he had two more huge bleeds and the doctors could not determine where it was coming from. The doctors said he had lost a third of his blood and had 15 units of blood transfused. The next day they took him back to the hospital he was originally in, as they were more advanced in terms of liver specialists. The bleeding finally stopped and they performed what is called a TIPS (transjugular intrahepatic portosystemic shunt) procedure. This involves entering through a vein in the neck, and going through to the liver where a small shunt is placed in order to bypass the blood.

Dad remained in a coma for two weeks after they had performed the procedure and taken him off sedation. Sometimes he opened his eyes and looked around, but was still essentially ‘asleep’. The doctors said they had expected him to wake up after two or three days, and an MRI and ECG scan revealed there was little brain activity. They were not sure whether it was permanent brain damage or a result of the unfiltered blood going to the brain and carrying toxins such as ammonia. They decided to perform the TIPS procedure again to make the shunt in Dad’s liver smaller. This would allow 30% of the blood to filter through the liver, but 70% still would be bypassed. They also put Dad on a liver dialysis machine, which was only the second time they have used the machine in that hospital. After all this, they told us they were not pleased with Dad’s progress and were expecting him to be much more alert. He was awake but extremely confused and weak.

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my story Dad spent five weeks in intensive care and was only recently taken back into the Hepatobiliary and Colorectal ward. He is now awake and conscious, but still extremely confused. He does not talk much and when he does it is hard to understand.

However, the doctors will not put him on the transplant list at this stage because his body is too weak, and if his brain is not fully functioning then he most likely would not accept a new liver. There is talk of performing another TIPS procedure and completely removing the shunt so that 100% of the blood is filtered. However, by doing this the chances of him having another massive bleed are high.

I showed him a photo of himself the other day, and I said: “Do you know who that is?” He looked at the photo for a while and shook his head. I said: “That’s you, Dad!”

It’s now just a matter of waiting until Dad’s condition is known. This is very hard, but staying strong and positive – not only for my sake but for my family’s and, most importantly, for Dad’s sake – is crucial.

He continued to look at the photo with a very confused look on his face and said: “Me? Is it really?” The doctors are still unsure TIA / Flickr whether Dad has permanent brain damage from a loss of oxygen through the massive bleeds, or if he is suffering from a condition called hepatic encephalopathy, where the brain functioning is altered as a result of the liver no longer being able to get rid of all the body’s toxins. The doctors have said that if this is the case, he is in it very deeply and they have never seen it to this extent before. Despite this, Dad is slowly getting physically stronger. He is improving every day. The shunt in his liver is not designed to be a longterm solution and the doctors have said the only ‘cure’ for him will be a new liver.

Hep C is a condition with which some people can live with their whole lives and never really see any negative physical effects. Unfortunately for my Dad, he has seen the full extent of hep C liver illness and knows all too well how serious and debilitating it can be. So does the rest of my family. By Danella Smith • Abridged from hepatitissa.asn.au http:// tinyurl.com/ozmld8o

First World Indigenous Peoples’ Conference on Viral Hepatitis 14-16 September 2014, Alice Springs, NT. Back-to-back with the Ninth Australasian Viral Hepatitis Conference, Alice Springs Convention Centre, Alice Springs, NT. 17-19 September 2014. Find out more about the conference http://www.hepatitis.org.au

Good, bad or a just a rant ... we want to hear what you think about each Hep Review magazine. Tell us what you think and you’ll go in the draw for a $100 gift certificate. That’s right, we’ve doubled the prize amount. See our reader survey on page 51. Conditions apply - see page 51.

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C - the person not the disease

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Stigma and discrimination are still huge issues for people with hep C, writes David Pieper.

In my practice we ... work as a team, helping our patients in an understanding and relaxed environment. We value compassion and a positive outlook on life in which stigma and discrimination against people with hepatitis C is completely inappropriate. I am fully supportive of this campaign ...

tigma stems from the association between hep C and injecting drug use. Everyone living with hep C is affected by stigma and discrimination irrespective of whether injecting drug use is part of their life, now or in the past. Whatever the route of transmission, stigma and discrimination are just plain wrong. They act as a barrier to people’s access to treatment and support; they help drive risk behaviours underground, away from prevention initiatives.

Dr David Baker

You’d like to think that people with hep C would at least be safe from stigma and discrimination in a medical setting – but this is not the case. A comprehensive examination found that discrimination by healthcare workers against people living with hep C was widespread. Close to 30% of people with hep C reported experiencing discrimination from a healthcare worker and around 12% experienced discrimination from a doctor. The fact that this is an ongoing problem is supported by statements from callers to the Hepatitis Infoline.

Our front cover for this edition of Hep Review features the poster artwork. What else was involved in the campaign? • 3800 GPs in NSW and ACT were sent campaign materials including a DVD, campaign flyer, guide to discriminatory and non-discriminatory language and a clinical tool for decision making on hep C testing, assessment advice and referral. • 25 people with lived experience of hep C shared their stories for a tumblr page demonstrating the human side of stigma and discrimination.

“I was deeply humiliated by a doctor who, panicking after a needle-stick injury, shouted to everyone in the surgery reception demanding to know my hep C status. I was paralysed ... hearing everything yet unable to answer, it was a nightmare! Despite making a formal complaint ... I received little support, leaving me despairing and mistrusting of the medical profession.”

• 23 GPs provided quotes and photos demonstrating the attitude to stigma and discrimination in their practice. • An online pledge was established for health professionals and others to sign, committing them to addressing stigma and discrimination.

Glenda C C-the person not the disease is a hep C antidiscrimination campaign that used the lived experience of people with hep C. Using Community Advocates trained through Hepatitis NSW’s grassroots C me project, we demonstrated the impact of stigma and discrimination by bringing it out into the open and exposing it to public scrutiny. We also wanted to highlight the fantastic efforts of those in the medical profession who are standing up against stigma and discrimination.

• Opportunities to speak to a GP directly through a number of Medicare Local events resulted in a greater understanding of the issues around hep C stigma and discrimination. If you’ve been affected by stigma and discrimination and want to get inlvoved in C me campaigns to tackle these and other issues contact David Pieper on 02 9332 1853 or campaigns@hep.org.au • David Pieper, Hepatitis NSW.

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Walk a mile in my shoes: Consider the darker side of Living with hep C Many stereotypes that people carry – especially to do with hep C – are incorrect, unhelpful and downright dangerous, writes Adrian Rigg.

e all have conscious and unconscious stereotypes and prejudices that influence how we relate to other people. At some time we have all discriminated against others, and we have all been discriminated against. Every person feels that they have sometimes been judged unfairly based on someone else’s idea of them.

“Stigma is a social process,” says Dr Hopwood. “It’s about the power of people to be able to point to other people and other groups and say ‘Your practices, your behaviour, your beliefs are not valued, they’re not wanted’. This then extends to ‘You’re not equal with us, you’re not a good person’.”

Some groups of people are commonly perceived in negative ways, even by people who don’t know anyone who is in those groups. People living with hep C belong to a group that is often discriminated against. This is partly based on the assumption that they are drug users. A person with hep C may be someone who injects drugs; they may never have injected drugs; or they may have injected drugs in the past. No one else can know this without the person telling them.

As members of the community, health professionals are also susceptible to stereotyping people. They can treat people differently based on their own assumptions.

As with all stereotyping, it is easier for people to use a few examples to represent a vast and varied group of people. It is also easy to link groups of people together, such as “people who inject drugs” and “people with hep C”. You don’t need to be one of the first to be in the second group and vice versa. You don’t have to be a certain type of person to be in either group, and you should not be treated badly for being in either group. While most people living with hep C contracted it by sharing injecting equipment, it is not helpful for people to make assumptions about this. Stereotypes and assumptions really become problematic when they start to affect people’s health. Stigma Stigma refers to a mark or a sign of defect. In our society groups of people can be thought of as “marked” or “defective”, and treated as such. When stigma is acted on, this is discrimination. Dr Max Hopwood, social psychologist and Research Fellow at the Centre for Social Research in Health at University of NSW, says that any type of stigma represents inequality. “That’s really what it comes down to – stigma is inequality. It’s about making people feel as though they’re not equal,” he says.

www.hep.org.au

Fiona Poeder, Manager of the Policy, Advocacy and Communications team at NSW Users and AIDS Association (NUAA), says that this is a big problem for people who inject drugs and people living with hep C. NUAA is addressing this discrimination head on. “We run stigma and discrimination training for healthcare professionals, for people who inject drugs and for the general community,” says Fiona. “People are starting to come to us for the training as they become more aware of it. We adapt our training for different groups to reach as many people as we can.” The media The danger with stereotyping is that it is easy for people to distance themselves from groups they feel they can’t relate to. For example, believing that all people living with hep C inject drugs, and that all drug users are criminals who steal so they can buy drugs, makes people feel that they don’t know anyone who fits this description; in reality, they may know people living with hep C and/or use drugs. This kind of distancing leads to a lack of understanding and empathy and can create an “us and them” divide. Also, stories in the mainstream media about drug use often report on violence and crime: crime to gain money to buy drugs or the violence of a person who uses drugs. These things occur, but they are often reported in a way that causes fear in the reader, and they may be presented as being typical. Use of words such as “epidemic” and

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“scourge” feed people’s fears, and, as with many other topics, statistics may be quoted with no real context, which can make the issue seem bigger than it is. The brief nature of media reports means that stories may not be well-rounded; likelihood of addiction to a drug can be exaggerated, and other factors involved in crime or homelessness, such as mental health issues, are not explored. Media reports also play on the “unpredictable” nature of drug use, suggesting that people who use drugs are dangerous and might do anything. In reality, the effects of drugs such as heroin are well understood and documented. These scenarios do not help in the common goals society has of harm reduction and appropriate health care and support for all citizens. The paper “Drugs in the Australian News Media: Trends and impacts on youth attitudes to illicit drug use”, published by the University of NSW Drug Policy Modelling Program in 2010 and based on their research, reports that the way in which stories about illicit drug issues are framed – the tone and angle of a piece – matters. It found that stories about drug use consistently emphasise criminal justice and legal problems,

and that this restricts discussion and debate on the issues to those areas. They also state that the way stories are framed differs according to current events and agendas. In this way, overall media reporting and framing at any one time is not random, but is consciously decided on. This applies to more reputable news sources as well as tabloid and mass media. Fiona Poeder says that many negative stereotypes that people hold are unrealistic. “There’s a fear of drug users – fear that they have contagious viruses,” says Fiona. “But also that drug use itself can be catching. If you associate with drug users, there is a perception that you might start to use drugs, or that your children might.” She also cites market research conducted by the Australian Injecting and Illicit Drug Users League (AIVL), which found that many people had strong views about the issue. “The research by AIVL found that most people didn’t know any people who use drugs, but they had these stereotypes of drug users that are so ingrained,” says Fiona “It’s the kind of thing they see in the media, and people take that on.”

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Louisa Billeter / Flickr

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Health It is difficult to measure the effects of stigma on people’s health, because there are so many factors that affect people’s wellbeing. Research, however, has found that stigma around drug use can cause people to avoid seeking health care. This is further complicated because some people who inject drugs may have additional needs, both contributing to and arising from drug use, such as financial problems, mental health and other health issues, unstable housing, and exposure to the criminal justice system. Shane Darke, Professor at the National Drug and Alcohol Research Centre, University of NSW, in his book The Life of the Heroin User: Typical beginnings, trajectories and outcomes, says that many people who use heroin come from less stable backgrounds; perhaps with a disadvantaged childhood. Such backgrounds may lead to poorer health, both physical and mental; this is associated with uptake and continuation of drug use. He also states that people who use illicit drugs are more likely to have children who go on to use illicit drugs. Professor Darke emphasises that this cannot be applied to all heroin users, nor to all people from disadvantaged backgrounds; only that there is a correlation.

www.hep.org.au

So according to Professor Darke’s research, people who feel like outsiders from mainstream society are more likely to begin using injecting drugs; they then become part of a group that is generally considered to be outside mainstream society.

Making something illegal does not usually stop it happening, but causes people to do it in secret. Max Hopwood says that being outside mainstream society can influence the way people act in daily life, as well as the ways in which they think about their health. “Being outside mainstream society affects the way people think about their health and how they access health care,” says Dr Hopwood. “It also inhibits people from doing normal things they should be able to do.” AIVL, in its Report on Stigma and Discrimination towards the Injecting Drug User Community, states that many people who use drugs are fearful of the discrimination they may encounter from the medical profession.

Anonymous / Exposition by RAF

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The impact of the legal status

This can cause them to avoid these situations, and, therefore, not seek help for illness or injury. The very fact that most drug use is illegal adds to this. AIVL also reports that illegality adds many difficulties: the pressure of outstanding warrants, court appearances and imprisonment cause people to consider their health a lower priority. This is especially true of complex health issues such as hep C. “People go out of their way to hide that they use, or have used, drugs,” says Fiona Poeder. “In terms of health, that can be very difficult. You want to be honest with your health professionals, but the outcome can be that people are treated differently, or not treated at all.” David, who has hep C, says that he may not always tell his health professionals. “Generally speaking, I don’t disclose my status for fear of negative reaction,” he says. His dentist used to treat him differently to other patients. “He used to always schedule me to be the last person he saw, presumably as infection control,” says David. “Of course that’s bullshit, but it really annoyed me at the time.”

Making something illegal does not usually stop it happening, but causes people to do it in secret. This exposes people to more risk and fewer opportunities for the kind of support other people take for granted, including health care. Much stigma around drug use stems from its legal status. “The thing that underlines all of this is illegality,” says Fiona Poeder. “Drug use is illegal, therefore it must be bad; therefore the people who use drugs must be bad. There’s a whole morality associated with drug use.” Dr Alex Wodak, President of the Australian Drug Law Foundation, says that branding people who use drugs as criminals drives them underground; this can make it harder to reach them with harm minimisation programs. “People who use drugs have often been very badly damaged by our drug policy, losing their children, their health, their loved ones, their legal freedom, their education, their employment etc, but have kept using drugs,” says Dr Wodak. “Now, after many years of academic debate, there is an emerging consensus that global drug prohibition has been a colossal and expensive failure.”

Hep Review magazine

Edition 85

Sept 2014

feature Are you affected by viral hepatitis and looking for support? Then Let’s Talk. Hepatitis NSW has a free counselling service offering face to face, telephone and online sessions. We have a team of qualified counsellors, all with specialised knowledge in hep C. If you want to talk, we have someone who will listen and work with you to start creating a better way of living. For more information call Hepatitis Infoline on 1800 803 990 or email info@hep.org.au

Let’s Talk

Hepatitis NSW Counselling Service

Drug law reform Many experts on drugs use and in drug law reform agree that changing the legal status of illicit drugs would help improve the health of people who use them. This would cause vast changes in the way people behave, including through having no fear of legal repercussions when calling for help when someone using drugs has a bad experience or overdoses, and feeling they can be open and honest with their healthcare providers. Drug law reform would also help to reduce the stigmatisation of people who use drugs because they could no longer be considered criminals by others in the community. Alex Wodak says that as attitudes towards drug use change, so will the lives of the people who use drugs.

www.hep.org.au

“As we redefine drugs as primarily a health and social issue, increase funding for health and social response to drugs, and recognise that people who use drugs are also citizens and have to have their human rights protected, they will increasingly lead more useful and normal lives,” says Dr Wodak. “Prevention, treatment and care will become much less difficult.” And David’s dentist doesn’t schedules him at the end of the day anymore. “He no longer does that, so maybe he’s wised up,” says David. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com

my story

My story: some valuable words of advice

thought I would share my story in the hope of sparing someone the pain and anxiety that I’ve been through. Many years ago I used to inject drugs. In the later stages of my injecting career I was in a relationship with someone who was hep C-positive. I shared needles after him on more than one occasion – which was pretty common among couples I knew. Sometime later, I was single and I decided to find out if I was hep C-positive. I nervously went to the doctor and a couple of weeks later, I went back to get the results. He told me I was hep C-positive and I burst into tears, sobbing so I could not speak. After composing myself, I left without having being given any advice, resources or referrals. I felt so alone and scared. I knew nothing about hep C. For years I buried my head in the sand, too terrified to even contemplate that I had hep C.

The worker explained the differences between an antibody and a PCR test. She asked which test was performed. I had no idea! She also explained the importance of pre and post-test counselling and how this would have helped me cope. She gave me booklets about hep C which ended my ignorance around hep C. With the NSP worker’s advice, I went to a doctor and got a PCR test. This showed that I was PCR negative – I had naturally cleared the virus. I did not have hep C. If you want to save yourself from years of anxiety and uncertainty, if you have been told you are hep C-positive, make sure you ask for a “PCR test”. And in case it comes back positive, don’t forget to ask for hep C resources and referrals. • Anonymous, NSW

Fast forward a few more years and I was completing a TAFE course and needed resources for an assessment. I visited an NSP (Needle and Syringe Program) and met a friendly and supportive worker. I told her about how I thought I had hep C and my experience at the doctor.

I went to a doctor and got a PCR test. This showed that I was PCR negative...I had naturally cleared the virus.

Hep Review magazine

Edition 85

Sept 2014

Janet, Western Sydney / Exposition by RAF

If you have been told you are hep C positive, make sure you ask for a PCR test

feature Crimea crisis hits methadone hard Every morning, Sergei Kislov takes the bus to the rundown outskirts of this port city for the methadone doses that keep him off heroin. Now that Russia has taken over Crimea, the trips are about to end, reports the Associated Press.

cross the Black Sea peninsula, some 800 people dependent on heroin take part in methadone programs [seen as important in reducing blood-borne virus infections by taking people away from needles that can spread viruses]. But Russia, which recently annexed Crimea, bans methadone, claiming most supplies end up on the criminal market. The ban could undermine years of efforts to reduce the spread of viruses in Crimea. After years of rapid growth in infection rates, the Ukrainian Health Ministry reported the first decline in 2012. Many attribute that decline to methadone therapy. “HIV is an illness that often sweeps up those people who aren’t socially secure,” said Denis Troshin, who runs the local NGO, Harbor-Plus, which helps coordinate methadone therapy for 130 of Sevastopol’s recovering drug dependents. Methadone doesn’t have the same euphoric effect as heroin and it weans people off the drug by blocking the pain, aches and chills of withdrawal. In preparation, Kislov has already started reducing his daily intake of methadone by about 10 milligrams each week.

Image via www.ktvu.com / Google Images

Although he voted enthusiastically for Crimea to join Russia, he didn’t expect the methadone program to end so quickly.

www.hep.org.au

“It is happening at such a pace that it’s going to be a massacre here,” he said. “They’re abandoning 130 people and forcing them to fend for themselves, even if that means we’ll end up stealing again and going to jail.” Troshin says the group has sent letters to both local and national politicians. But even if the group gets permission from local authorities to extend the program, the Ukrainian health minister said that Ukraine would not be sending any more methadone to Crimea, and recommended that any people dependent on drugs there move to mainland Ukraine if they wanted to continue their treatment. For Alexander Kolesnikov, a 40-year-old who has now been in the group for four years, moving to Ukraine isn’t a possibility. He has an ageing, diabetic mother to care for. “Half of my mother’s heart is for Russia – she will get a higher pension and she’ll have a better standard of living,” he said. “But the other half of her heart supports me, and she doesn’t want to see me [drug dependent] ever again.” • Abridged from news.yahoo.com (5 April 2014) http://tinyurl.com/mtnhbws In Ukraine, about 3% of the population has hep C. This is about three times higher than the rate in Australia.

feature

The importance of maintaining regular liver assessment

Don't you forget about me

Whether or not you’re thinking of treatment, you should think about monitoring your liver, writes Sarah George.

e often hear that it’s important to regularly have your liver assessed or monitored if you are living with hepatitis B or C, but what does a liver assessment really involve and is it really necessary? With the development of new and better treatments, Hepatitis Australia has developed three key messages for people with hep C. In a nutshell, they are all related to regular liver assessment and monitoring.

Get informed: Things are changing, treatment options are better than ever before and there is now a much better chance of a cure.

Get assessed: Re-engage with the medical system; make an appointment with your healthcare provider and ask for a liver assessment.

Keep going: Whether or not you are planning on taking on hep C treatment, get in the habit of being assessed regularly each year. This way, you know what is happening to your liver and you can plan for treatment at the optimal time for you. A liver assessment involves two or three tests or procedures:

Why these tests? Liver Function Tests are a blood test designed to measures a range of substances which are found in the blood when your body is sick or under stress.

My next 6 / 12 monthly liver checkup is: (fibroscan and bloods)

Write your next appointment date here: My clinic phone number is: For more info call the HEPATITIS

1800 803 990

or look up our website

www.hep.org.au

The most commonly talked about substance is the ALT (short for Alanine Transaminase). Fluctuation of ALT levels is normal within limits and they can also increase in response to strenuous physical exercise. When excessively elevated ALT levels are found in the blood, it suggests possible underlying liver damage. Your Viral Load is the amount of virus that you have in a given volume of your blood (usually 1 millilitre = 1 cubic centimetre). The viral load can range from “not detected” to hundreds of millions. A very high viral load suggests possible liver damage. A Fibroscan is a quick, painless, non-invasive procedure similar to an ultrasound that sends sound waves through the liver. The speed with which they bounce back gives an indication of the level of damage in the liver.

• A blood test called a Liver Function Test (LFT) that looks for several substances – the key one being ALT (Alanine Transaminase)

Fibroscanning means that liver biopsies are usually no longer required to assess damage to the liver. There are more than 30 Fibroscan machines in NSW – call the Hepatitis Infoline (1800 803 990) to find out if there is one near you.

• A hep C Viral Load blood test

How often should you have a liver assessment?

• Your doctor may also ask for a Fibroscan to be done (if locally available).

If you have chronic hep B, you should have a liver assessment every six months (or more frequently if advised by your doctor).

When you receive the results from these three tests, your doctor should explain what those results mean to you, and how they might affect your decision about whether to go on treatment.

For free copies of the liver checkup card (above right), please contact the Hepatitis Infoline...see page 50.

If you have hep C, it’s recommended to have a liver assessment every 12 months (or as advised by your doctor). • Sarah George, Hepatitis NSW.

Hep Review magazine

Edition 85

Sept 2014

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It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid bloodsame knives and forks. to-blood con tact with oth er people, you are not at risk . It is transmitted when So if infected blood from one hep you find out someone has C, support the person gets into the m and don discriminate against them. ’t bloodstream of someone else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or call the www.hepatitisc.org.au Hepatitis He or call the lpline (se e over) Hep C Helpline (see over)

ur hep C bookm arks have proved very handy in promot ing greater awar en about hep C in th ess e general comm unity. Almost 250,000 have been distrib uted to many public and private schools, public libraries, TAFE an d university libra ries and commercial book stores.

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Ideas include: • Putting them in doctors’ surger ies • Putting a stac k of them in your local library, community centre or bookst ore • Letterbox dr ops in local street s. We can supply as many bookmarks as you need. Just go to our website and download our resources or der form or phon e the Hepatitis Infoline (on 1800 803 99 0).

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promotion

Hepatitis NSW Cheryl Burman Award

epatitis NSW would like to recognise the efforts and achievements of others in NSW who have made significant contributions in support of people whose lives are affected by viral hepatitis.

Sadly, Cheryl died on 9 August 2011 after her very long struggle with hep C. We are pleased to name this Award in Cheryl’s memory and honour.

The Hepatitis NSW Cheryl Burman Award was initiated in 2013. The award recognises and celebrates a person, or team of people, operating in NSW, who have made an outstanding commitment to the advancement of prevention, support, information provision, management or treatment for people living with viral hepatitis. The award pays tribute to Cheryl Burman, a key individual who provided exceptional leadership in the NSW viral hepatitis response, on behalf of Hepatitis NSW and its forerunners, the Hepatitis C Council of NSW and the Australian Hepatitis C Support Group.

The 2014 award will be presented at our Audrey Lamb Community Forum, alongside our AGM in November. • For further information, or to have the Award Process & Guidelines and a nomination form posted to you, please email Toby Armstrong: tarmstrong@hep.org.au or call him on 02 9332 1853. Or simply download them: Cheryl Burman Award Guidelines and Cheryl Burman Award Nomination Form: http://tinyurl.com/kv46ndr The closing date for nominations for this award is 18 September 2014.

Cheryl served on the Board of the Hepatitis C Council of NSW from 1993 to 2000, and as our President from 1995 to 1999. Cheryl made significant contributions to the governance and leadership of our organisation for almost seven years, and continued to remain friends with and a supporter of Hepatitis NSW.

Hep Review magazine

Edition 85

Sept 2014

feature

Hepatitis C and Ageing: a community brief

Growing older and duration of infection are significant determinants in the progression to cirrhosis amongst people with hep C, report Australian researchers.

n estimated 230,000 people in Australia are living with chronic hep C. While the number of people estimated to have been newly exposed to hep C has decreased over the past 15 years, the number of people with hep C-related liver disease is increasing. Growing older and duration of infection are significant determinants in the progression to cirrhosis among people with hep C. There is a lack of social research describing the experiences of people with hep C as they grow older. Australia’s population is ageing, with an increasing number and proportion of people aged over 65. Government programmatic responses to the ageing population are of a health promotion approach, focussing on maintaining older people’s health and independence. Less than five per cent of older people in Australia live or will live in aged care facilities, with a greater emphasis from government policy on keeping people at home: home-based aged care services will have an increasingly important role into the future. This qualitative, interview-based research conducted with key clinical, community and bureaucratic stakeholders in the Australian hep C sector aimed to identify key issues and challenges relating to ageing and hep C to inform future research directions.

An Australian Injecting & Illicit Drug Users League (AIVL) investigation into ageing in 2010 describes people who inject drugs who are over 40 years as ageing. During interviews, significant attention was directed towards discussing whether “age” is a proxy for “severity of liver disease” or whether there are specific-age related issues associated with mild liver disease. Participants acknowledged that older people with hep C often experience comorbidities related to ageing, in addition to extrahepatic manifestations of hep C infection, which often complicate the management and treatment of hep C.

While the clinical management of hep C is changing and new treatments promise a shorter treatment course with fewer side effects, several clinicians expressed guilt in advising older people to wait for interferon-free regimes because of concern about pre-existing comorbidities, while being concerned that advising older people to wait for three to five years for the new treatments may be too late.

While all participants recognised ageing and hep C as a significant issue for Australia, they acknowledged that there was a lack of specific services (clinical and/or community-based) targeting older people with hep C. The lack of services resulted from the limited contact participants had with older people with hep C, and participants expressed concern about their limited understanding of the needs of older people with hep C.

Older people with hep C are not identified as a priority population nor are their needs discussed in the National Hepatitis C Strategy 2010-2013. Therefore, it is not surprising that hep C and ageing are not identified as a priority in either the national or state health agenda of the aged care sector. In order to articulate the impact and issues associated with hep C and ageing, the issue of ageing in Australia needs to be examined broadly and the impact of hep C considered in the current context.

The lack of services is compounded by the variety of definitions of ageing between the research literature, national policy and stakeholder perspectives. For example, the Australian Government considers people over 65 years to be “older”, whereas in the context of people with hep C, participants described ageing people as those older than 55 years.

Exploring the needs of people with hep C as they age needs to occur as a matter of urgency, because older people with hep C are a hidden population. A comprehensive, strategic approach to hep C and ageing is needed to ensure that the needs of older people with hep C do not continue to go unrecognised.

www.hep.org.au

• Abridged from latrobe.edu.au (March 2014) http://tinyurl.com/lrqmdq5

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• Tonic water with a squeeze of lemon • Soda water with a squeeze of lemon • Tonic or soda water diluted with fruit juice and bitters. Hep Review magazine

Edition 85

Sept 2014

Background image by Rice and D / Flickr

Image via

realfoods.

co.uk

Want to alternate your alcoholic drinks with something soft but still with a bit of bite?

hep chef

Persian spiced beef with dates & cinnamon Did you know that Persia was an ancient kingdom within Iran? Here’s a recipie that may hark back to the days of Kings and Queens past. Ingredients Olive oil spray 400g trimmed blade steak, diced 2 brown onions, thinly sliced 3 garlic cloves, thinly sliced 2 teaspoons grated fresh ginger 2 teaspoons sweet paprika 1 teaspoon cinnamon 1 x 400g can no-added-salt diced tomatoes 500g sweet potato, peeled, diced ¼ cup chopped dates 1 cup baby spinach

Fatigue is a common symptom of hep C and its treatment, and can make healthy eating quite a challenge. Cook in bulk when you’re feeling well, then freeze into single-serve portions that you can just microwave when you’re feeling under the weather. Try low-effort casseroles and soups where you just throw everything into a pot and let it simmer away until it’s done. Saves on washing up too!

Directions Spray a large heavy-bottomed saucepan with olive oil and set over a high heat. Add steak in batches and cook, stirring, for 2-3 minutes or until browned. Transfer steak to a plate. Return saucepan to medium heat; spray with oil again. Add onion and cook, stirring occasionally, for 5 minutes or until soft. Add garlic, ginger, sweet paprika and cinnamon; cook, stirring, for 1 minute more or until fragrant. Return beef to saucepan with tomatoes and 1 cup water; stir to combine and bring to the boil.

Image via kusinamaria.com / Google Images

Cover saucepan with lid, turn heat down to low and cook for 1 ½ hours, stirring once or twice during cooking and adding a little water if the dish looks dry. Add sweet potato and dates to saucepan, cover and cook for a further 30-50 minutes or until beef and sweet potato are tender.

www.hep.org.au

Remove dish from oven and stir spinach through mixture until wilted. Serve the spiced beef with steamed vegetables.

Tips Save on ingredient preparation time by using frozen sliced onions (1 cup per onion), minced garlic in a jar (1 teaspoon per clove) and minced ginger in a jar instead of fresh versions. Other cuts of meat that you can use instead of blade steak include chuck steak, round steak, topside, skirt steak and shin (gravy) beef • Adapted from Australian Healthy Food Guide, April 2014.

Going viral – saluting one year of SUCCESFUL development work

feature

Going Viral is a project which invigorates the relationship between NSP and other service providers and is ticking all the boxes. Shae Clayton-Freedman reports on recent developments.

ongrats to all partners and organisations involved in Going Viral so far. 2013-2014 has been the first year of three years of project rollout: we have successfully delivered the project once in each participating Local Health District (LHD), and in doing so have directly engaged 34 organisations across the state!

Evaluation of the first two stages of the project shows:

Going Viral aims to increase knowledge of, and access to, both the Needle and Syringe Program (NSP) and hep C prevention for young people who inject drugs or are at risk of hep C.

• Strengthened links between youth services and NSP/hep C prevention services.

The project targets workers at organisations through three stages: • Hepatitis C education workshops • NSP Amazing Race/ education and grant workshops • Going Viral grant-funded activities.

• A marked increase in skills and knowledge of hep C transmission and prevention. • An increased confidence in talking to young people about hep C.

• A developed understanding of issues of stigma and discrimination facing people who inject drugs. • A renewed energy to address hep C prevention and education needs for young people and new injectors. The project’s third stage, local grant-funded activities, is well underway across the state. Engaged organisations have the opportunity to apply their learning from the first two stages to develop relevant local activity to engage their young people by using Going Viral grant funds. We are seeing local projects that range from staff training, incentive-based education workshops, peer outreach projects, film clips, and peerdeveloped resources...with some organisations even considering becoming secondary NSPs. 2014-2015 will be the time for another roll-out of the project in participating LHDs across the state: starting with Western NSW LHD (Bourke/ Brewarrina, Walgett and Lightning Ridge) in August; followed by Western Sydney LHD in September; Sydney LHD in November; South Eastern Sydney LHD in December; and Nepean Blue Mountains/Western Sydney in March. It’s all about increasing access to hep C prevention education … and it’s NSW Going Viral! • Shae Clayton-Freedman, Hepatitis NSW.

Hep Review magazine

Edition 85

Sept 2014

feature

HELLO HEPATITIS INFOLINE Hi. I manage my hep C pretty well. I see the doctor twice a year and I don’t drink much alcohol. The reason I’m calling is because I’m starting a new job, and I want to know how much to tell them. I probably won’t need time off, but I suppose they should know that someone who works for them has hep C. That’s right, isn’t it? It sounds like you’re doing a lot of really great things for your health. Staying in touch with your doctor and reducing your alcohol intake are good ways to try to stay healthy with hep C. Even if it isn’t a big deal for you at the moment, it can be worth thinking carefully about who you tell that you have hep C. Most of the time at work, people with hep C don’t have to tell anyone. There are only a few work circumstances where you are expected to disclose. They are:

• When you’re a healthcare worker who does exposure-prone procedures. • If you do boxing or martial arts. Those employment situations are the only times you have to tell anyone at work that you have hep C, but that doesn’t necessarily mean that you can’t work in those fields. In the case of the defence forces, you may be asked to leave if you have hep C (or you might be deemed unsuitable to join in the first place), but that’s determined on a case-by-case basis. If you’re a healthcare worker, you can’t perform exposure-prone procedures, but there are plenty of other roles within the healthcare field which hep C positive people can do.

INFOLINE

www.hep.org.au

Having said all that, some people find themselves in a work situation where they feel comfortable telling other people about their hep C, or where they still feel that their colleagues or bosses have a right to know. That’s all up to you, but do bear in mind that hep C disclosure can be a difficult road. Once it’s said, disclosure can’t be taken back and negative reactions are a reality for many people. So it can be wise to weigh up the pros and cons carefully. If you’d like more information about disclosure, ways to do it and circumstances where it’s necessary, please get in touch with the Hepatitis Infoline. For more detailed information about disclosure, see the factsheet at http://tinyurl.com/3f2gx2p • Hepatitis Infoline 1800 803 990

HEPATITIS 1800 803 990

The reason there aren’t more jobs where you have to disclose your status is because workplaces have a responsibility to follow standard infection control procedures. Those procedures are designed with viruses such as hep C in mind, and if they’re followed correctly, they’re enough to keep everyone safe. Infection control guidelines include treating all blood as though it could pass on a virus, using the same precautions for everyone (regardless of what you know about their health) and isolating infectious organisms rather than isolating people. With those principles (and a few others) in mind, any accidents at work can be handled in a way that minimises the risk of hep C being passed on.

• When you’re applying to join the defence forces (the army, navy or air force), or when you’re already working there,

INFO, SUPPORT, REFERRAL

Exposure-prone procedures involve some pretty specific circumstances: they are procedures in body cavities that are hard to see, where there is a risk of contact between a worker’s skin (eg. fingers) and something sharp (like a surgical instrument or a piece of bone or tooth). If you’re a healthcare worker who’s not carrying out those procedures, there’s no need to tell anyone at work unless you want to.

FREE CALL FROM LANDLINES Interpreter service available

www.hep.org.au

“Hello Hepatitis Infoline” is brought to you by the Hepatitis Infoline team. The questions are based on genuine calls but some details may have been changed to ensure caller anonymity.

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Hep Review magazine

Edition 85

Sept 2014

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4. For the purposes of the prize draw, what is your first name and your contact phone number or, if you are currently inside, your MIN? (see conditions, page 49)

3. What is your postcode? (or prison code?) ............................................

2. What is your gender? female

1. What is your age?

www.mhahs.org.au

Hep Review magazine

Edition 85

Sept 2014

promotions

hep review magazine photo call A picture tells a thousand words, the old saying goes, and we really want your pictures in Hep Review magazine. We want our “voices” to ring loud in Hep Review and for many years we’ve recruited people’s personal stories. We want to go further, though. It makes sense to get pictures of us and our health workers and our clinics into our magazine. Who wants to see images found on the internet which could be from anybody, anywhere (often overseas)? If you like taking photos and have a decent camera, why not become a roving hep C photographer? We’ll pay $50 for each image that we publish in Hep Review and $100 for Hep Review cover shots.

Image / Pa

ul Harvey

Does it sound too easy? Well, there is a bit of work involved. We want pictures of people and this means we need permission sign-offs from the people in the photos. We also need high-definition images; pictures that are between 2MB and 5MB and even bigger for covershots. • Further conditions apply. If you’re interested, please contact Paul Harvey on 02 9332 1853 or pharvey@hep.org.au Also see our call for personal stories, page 7.

Would you like to help with hepatitis C research? You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help. There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site. The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee

www.hep.org.au

promotions The hepatitis C treatment outcome study You are invited to take part in a study designed to determine some of the physical, psychological, and social factors associated with hep C treatment. Previous research has indicated that certain physical and psychological profiles predict better treatment outcomes across a range of medical conditions. However, little is known about how these factors predict treatment outcomes in hep C. This research aims to increase understanding of individual profiles that are associated with better hep C treatment outcomes. We are inviting people aged over 18 years, who have a current diagnosis of hep C, access to the internet and an email address, and who plan to commence hep C treatment, to complete two confidential online surveys. We require your email address so that we can send you a link to the second survey at the appropriate time. The first survey must be completed prior to the commencement of treatment. A link to the second survey will be sent out to participants 14 weeks after commencing treatment. The first survey should take 35-40 minutes to complete, while the second survey can be completed in 5-10 minutes.

Participation in this research is voluntary and any information you provide is completely confidential. Your email address and responses to the survey are not linked to any information that could personally identify you. Only the principal investigators will have access to your email address. You have the right to withdraw from the research at any time, and without penalty. Result summaries and other relevant hep C-based education and information will be regularly posted on our website blog page. This information may be useful for people preparing for and undergoing treatment for hep C. Further, in recognition of the valuable time given to our research, people who meet the eligibility criteria for this study (decision at the discretion of the Phd student researcher), will be sent a A$20 Amazon gift voucher after completing the online surveys. • If you have any questions regarding this research please contact Mr Simon Langston at slangsto@bond.edu.au • If you are interested in participating in our research, you can access the online survey at: http://hcvstudy.bond.edu.au/

A shoutout from the hepCaustralasia online PEER forum

Tell us what you think and you’ll go in the draw for a $100 gift certificate.

And, most importantly, it provides valuable advice and support for those of us on treatment. It is a long, hard road but it’s made a lot easier by having sympathetic, like-minded people to talk to.

See our reader survey on page 51. Use the page out of each magazine or go online using the survey link.

Join us at: hepcaustralasia.org

That’s right – we’re now offering a $100 gift certificate for your feedback. Good, bad or otherwise, we want to hear what you think about each Hep Review magazine.

Conditions apply - see page 51.

Hep Review magazine

Edition 85

Sept 2014

Image by Cedric’s pics / flickr

I’m “Dee”, one of the forum moderators. What we love about the forum is we have a place to go to where everyone is in the same boat and we can talk freely about our experience without having to disclose to the wider world.

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E vic E Ser R lth F Hea

SW N

Upcoming events First World Indigenous Peoples’ Conference on Viral Hepatitis / Ninth Australasian Viral Hepatitis Conference 14-16 September 2014, Alice Springs Convention Centre, Alice Springs, NT. 17-19 September 2014. Find out more about the conference: http://www.hepatitis.org.au

Do you want to get healthy? See inside to find out how.

Complaints If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl.com/28ok6n2 or see right for our phone number and postal address.

Do you want to help? We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C.

If the answer is yes, give the gethealthy campaign a call.

Want to find out more? Please phone the Hepatitis Infoline – 1800 803 990

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With better treatment options now becoming available, perhaps now is a good time to ask yourself, Do I want to get healthy?

As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • Serving on our board of governance • Taking part in our C me community advocacy project • Providing content for Hep Review and Transmission Magazine. • Proofreading for Hep Review and other Hepatitis NSW publications • Magazine mailout work • Office admin volunteering (including focus testing of resources) • Local awareness-raising • Becoming a media speaker or C-een & Heard speaker.

www.gethealthynsw.com.au

Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes.

www.hep.org.au

An invitation to join or rejoin Hepatitis NSW

working towards a world free of viral hepatitis

You can join or rejoin Hepatitis NSW online at www.hep.org.au OR by filling out the membership form below. Please complete the appropriate section (A or B or C) See the table at the bottom for membership types. Are you a new or an existing member? (please tick one) I want to join for the first time I am renewing my membership I currently receive Hep Review but want to become a member

PAYMENT SECTION Hepatitis NSW membership ABN 96 964 460 285 All Hepatitis NSW membership fees are GST exempt. Membership fees may be tax deductible for health professionals. PAYMENT BY CHEQUE OR MONEY ORDER:

Please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form in the reply-paid envelope supplied.

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Membership fee $25 $10 $0 (NSW residents only) $40 $50 $70

Hepatitis NSW Hepatitis Infoline 1800 803 990 www.hep.org.au

P: 02 9332 1853 | F: 02 9332 1730 | E: hnsw@hep.org.au PO Box 432 Darlinghurst NSW 1300 | Level 4, 414 Elizabeth St, Surry Hills NSW 2010

Hep Review magazine

Edition 85

Sept 2014

research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on viral hepatitis. These research update pages attempt to meet this need. The articles on these pages have been simplified, but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Infoline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers. Our online version of Hep Review is at www.hep.org.au and contains live web links to the various sources shown in blue text. Another great reason to go online for your Hep Review magazine.

Quick links from BBV News Management of chronic hepatitis B in children: an unresolved issue: http://tinyurl.com/khmvxl3 “People Knew They Could Come Here to Get Help”: An Ethnographic Study of Assisted Injection Practices at a Peer-Run ‘Unsanctioned’ Supervised Drug Consumption Room in a Canadian Setting: http://tinyurl.com/mfk5z5t Trends in HIV, hepatitis B and hepatitis C prevalence among Australian prisoners - 2004, 2007, 2010: http://tinyurl.com/mmsue62

Hepatitis C testing and status among opioid substitution treatment clients in NSW: http:// tinyurl.com/pry5f9w 25th Anniversary of the ‘discovery’ of hepatitis C: http://tinyurl.com/lacflw3 • The above articles are abridged from BBV News, via E.Lenton@latrobe.edu.au If you don’t have internet access, please phone the Hepatitis Infoline for more information on these studies.

Hepatitis C and ageing: A community brief ARCSHS Monograph Series: http://tinyurl.com/ lrqmdq5

Virology update

Headlines from the latest Australian Hepatitis Research Review: High AST at LT predicts fibrosis risk post-LT?

Sleep disturbances in patients with HCV

Individual IFNs: specific roles in the immune response

TDF in lamivudine-resistant chronic HBV

Kinetic differences between IFN-α and IL28B in hepatocytes Anti-HCV therapy improves renal, CV outcomes in diabetes Boceprevir improves SVR in prior nullresponders

www.hep.org.au

SVR does not differ by age in HCV Using FibroTest™ and FibroScan® to stage chronic HCV Functional receptors identified for HBV and HDV • These and more virology articles are available via http://tinyurl.com/mdbmuc4

research updates SVR reduces hep C fatigue Successful treatment can reduce central fatigue, one of the most concerning symptoms associated with chronic hep C, according to research presented at the meeting of the European Association for the Study of the Liver (EASL). Zobair Younossi and colleagues with Inova Health System in Virginia evaluated changes in fatigue among people with hep C treated and cured with sofosbuvir, either in the NEUTRINO trial or the FUSION trial. Fatigue was assessed using three validated questionnaires. The researchers focused on items related to both central fatigue (four items) and peripheral fatigue (nine items). After achieving sustained response, participants reported significant improvement in fatigue compared to their pre-treatment scores using all questionnaires.

Early identification and care of hep B gets boost in US In the US, an estimated 800,000-1.4 million people have chronic hep B. Up to 70% were born in countries of Asia, Africa, or other regions where HBV is moderately or highly endemic. HBVassociated cirrhosis and liver cancer are major health problems for these populations. Most persons with HBV were infected at birth or during early childhood and are asymptomatic until advanced liver disease develops. To address these concerns, the United States Centers for Disease Control and Prevention (CDC) recommends HBsAg testing for all persons born in these areas and linkage to medical care and preventive services for those who are found positive. In 2012, CDC awarded funds to nine sites to implement this recommendation. This report describes programs at three sites (New York, New York; Minneapolis-St. Paul, Minnesota; and San Diego, California) that conducted HBV testing in clinical or community settings, and referred for medical evaluation and care for those persons who were found positive.

“Sustained virologic response is associated with improvement of fatigue,” the researchers concluded. “Central fatigue is the type of fatigue primarily affected by HCV clearance. Longer follow-up may be needed to show any potential improvement in peripheral fatigue.”

During October 2012-March 2014, the three sites tested 4727 persons for HBV infection; 310 (6.6%) were HBsAg-positive. Among the HBsAgpositive persons, 94% were informed of their results, 90% were counselled, 86% were referred for care, and 66% attended their scheduled first medical visit.

• Abridged from aidsmap.com (6 May 2014) http://tinyurl.com/pa6qj84

Herb active against hep C

These projects demonstrate that communitybased programs can identify individuals with hep B among those populations with a high prevalence of HBV infection and refer HBsAgpositive persons for care. Individualised efforts to assist patients with accessing and receiving healthcare services (“patient navigation services”) can increase the number of persons who follow up on referrals and receive recommended care.

A compound isolated from Chinese herbal medicines significantly inhibits hep C activity, according to research presented in London recently at the International Liver Conference held in London. The compound, SBEL1, was isolated from a herb found in Taiwan and southern China that is traditionally used to treat sore throats and inflammations. In vitro human liver cells treated with SBEL1 contained a quarter less HCV protein than controls, the researchers from Kaohsiung Medical University in Taiwan found.

• Abridged from cdc.gov (9 May 2014) http://tinyurl.com/przyavz

HCV RNA levels were reduced by 78%, they said, suggesting that SBEL1 may also affect the viral replication process. • Abridged from gastroenterologyupdate.com. au (15 April 2014) http://tinyurl.com/lyffufh

Hep Review magazine

Edition 85

Sept 2014

research updates Co-infection contributes to serious liver disease

Cash incentives improve hep B vaccination rates

Among people with hep C, the risk of serious liver disease is much higher in those who also have HIV, a new study finds.

Small financial incentives, totalling as little as £30, can dramatically increase the likelihood of people who inject drugs completing a course of hep B vaccination, according to new research published in The Lancet.

This is true even among patients with HIV who are otherwise benefiting from HIV anti-retroviral therapy, University of Pennsylvania researchers said. They analysed data from more than 4,200 patients with both hep C and HIV who were receiving antiretroviral therapy. In addition, they looked at data on more than 6,000 patients with hep C only. The patients received care between 1997 and 2010. Patients with co-infection had an 80% higher rate of serious liver disease than those with hep C only, according to the study, which was published in the journal Annals of Internal Medicine.

Researchers in the UK found that people undergoing treatment for heroin addiction who received a maximum total of £30 supermarket vouchers in equal or graduated instalments in return for full compliance with a regimen of three HBV vaccine injections were at least 12 times as likely to complete the course within 28 days compared to those not receiving a financial incentive (45% for equal payment instalments and 49% for graduated payment instalments vs 9% for no payment incentive).

Even co-infection patients who had a good response to anti-retroviral therapy for HIV still had a 60% higher rate of serious liver disease than those with hep C alone.

The study was led by Professor John Strang from the National Addiction Centre at King’s College London, UK, working in close collaboration with senior colleagues at Imperial College London and University College London (UCL), in the UK.

“Our results suggest that serious consideration should be given to initiating hep C treatment in patients with HIV and hep C co-infection,” said lead author Dr Vincent Lo Re III.

“[The fact] that monetary incentives increase compliance is unremarkable, but the size of the increase we observed was striking,” said Professor Strang.

Dr Lo Re is an assistant professor of medicine and epidemiology in the university’s division of infectious diseases and the department of biostatistics and epidemiology, as well as an investigator at the Penn Center for AIDS Research.

The study enrolled 210 people receiving opioid substitution therapy from 12 National Health Service drug treatment services across the UK.

“By taking action sooner, we may be able to reduce the risk of advanced liver disease in coinfected patients,” Dr Lo Re said. About 20-30% of HIV patients also have hep C, which is likely attributed to shared causes of infection. • Abridged from whatabouthiv.org (20 March 2014) http://tinyurl.com/neabqew

The researchers compared the effectiveness of three approaches in achieving completion of vaccination. In the treatment as usual group, only six (9%) of 67 participants completed all scheduled vaccinations, compared with 35 (45%) of 78 participants in the fixed reward group, and 32 (49%) of 65 participants in the escalating reward group. Additionally, the authors noted that most participants (at least 80%) receiving financial incentives attended appointments on time, ensuring a more efficient use of resources. • Abridged from sciencecodex.com (8 April 2014) http://tinyurl.com/kfvekak

www.hep.org.au

clinical comment Overcoming barriers of blood glucose testing John, a 57 year old man, has had type 2 diabetes for 10 years, was active sports person. He also had liver cirrhosis caused by hep C and alcohol. History of treated liver cancer (HCC) by a major hospital. NB: recent studies suggest 2-3 times higher rates of diabetes in patients with hep C, than in the general public (Harrison 2006). His care was shared between a major hospital and a local hospital liver clinic. When I met him he had already undergone six weeks treatment for hep C. Early pathology results indicated that the treatment was working, however his treatment must continue for 12 months. Hep C treatment can cause (immunosuppression) less white blood cells to fight infection, fatigue and (anaemia) less red blood cells. Hep C treatment of someone who has cirrhosis, aims to maintain a balance of liver function. Neupogen twice weekly injections were arranged by the major hospital to help keep white cell count up, hence, aiming for no infections. A side effect from this injection is joint pain and this was the main side effect John complained of. His diabetes medications included once daily insulin injection and a Metformin tablet twice daily. First consultation with John, he informed me his (BGLs) blood glucose levels were elevated and this was confirmed with a random glucose 17.8mmols/L. He was only testing occasionly and stated that no blood glucose levels were below 10mmols/L (normal range for someone with diabetes 4-8mmo/l/). His HBA1c (another diabetes test) was 6.8% which is excellent but can be misleading. Hepatitis treatment lowers haemoglobin, and this is known to cause inaccurate HBA1c levels (Greenberg, Rosman, Eldeiry, Naqvi, Brau) 2006.

Contact was made with his GP, regarding BGLs and the GP increased his insulin. An urgent appointment was arranged with an Endocrinologist/Staff Specialist. Seven days later his fasting glucose levels were all above 10.6mmols/L and after meals levels varied 8.9-14.6mmols/L. No overnight readings were documented. Endocrinologist commenced patient on four injections a day with two insulins. This was all too late because John was admitted to hospital two weeks later with a septic right knee requiring, invasive treatment of an urgent wash out of his knee and IV antibiotics. He remained in hospital for forty days. Blood glucose levels were stabilised during this time. Sadly, hep C treatment was ceased due to the sepsis, as a result hepatitis will continue to compromise the liver and ultimately cause end stage liver disease. Could this chain of events been changed? Due to other health problems I believe his diabetes was overlooked by the patient and numerous health professionals. Side effects of medications can mask serious infections. Without adequate diabetes control this patient could not cope with hepatitis treatment. Recommendations: In future, health professionals, patients and families should receive education about infection, side effects of medications, importance of regular blood glucose testing and acting sooner on high levels, how HBA1c is not always accurate, and the importance of having good diabetes control, especially with other chronic illnesses.

I issued John a new meter and instructed him to test pre- and two hours after each meal. I also asked if he could test overnight to detect whether he was having hypoglycaemia (low blood glucose levels).

• Julie D, NSW For more information about this case study contact the Hepatitis Infoline – 1800 803 990.

Hep Review magazine

Edition 85

Sept 2014

pharmaceutical treatment Triple combo treatment

Standard combo treatment

Triple combination treatment for hep C consists of either Incivo (telaprevir) or Victrelis (boceprevir), taken with standard combination treatment (peginterferon alpha and ribavirin).

Standard combination treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily. Standard combination treatment lasts between 24 or 48 weeks (depending on a person’s genotype and liver condition) and gives a 50-80% chance of cure (depending on a person’s genotype).

This new treatment is for people aged 18 years and over who have hep C genotype 1 and compensated liver disease (no serious liver damage). Triple combination treatment generally lasts 24-48 weeks (depending on a person’s treatment history, liver condition and/or response) and depending on circumstances, can give a 70-80% chance of cure. Treatment duration is generally shorter under triple combination treatment compared to standard combination treatment. Studies show there is increased risk of anaemia and skin rash, and other side effects. These will be explained in detail by your treatment team and will be carefully monitored by them.

Subsidised combination treatment for people with chronic hep C is available to people aged 18 years or over who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of childbearing age undergoing treatment must not be pregnant or breastfeeding, and both the woman and her male partner must use effective forms of contraception (one for each partner).

Men undergoing treatment and The requirements for Standard their female partners must use combo treatment (right) also apply effective forms of contraception to Triple combo treatment. (one for each partner).

Female partners of men undergoing treatment must not be pregnant. Duration and genotypes People with genotype 1, see Triple combination treatment, left. For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring People with genotype 4, 5 or 6 who are eligible for 48 weeks of treatment may continue treatment after the first 12 weeks only if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue

CAUTION Treatment with interferon has been associated with depression and suicide in some people. If you have any history of thinking about suicide or depressive illness, talk to your treatment team. They will be able to provide additional treatment monitoring and support. A potentially serious side effect of ribavirin, telaprevir or boceprevir is anaemia (an imbalance of red blood cells). During treatment your blood is monitored closely, especially in the first few weeks, and, if problems arise, doses of your treatment drugs may be lowered or other drugs may be given to help manage your side effects. Skin rash is another side effect that is closely monitored. Ribavirin is a category X drug and must not be taken by pregnant women. Women undergoing treatment – or the female partners of men undergoing treatment – must not be pregnant, or fall pregnant, during therapy and for six months after cessation of treatment. The dose of boceprevir or telaprevir should not be reduced under any circumstances. With these drugs, it is a case of all or nothing. For more detailed information on current treatment options, see our Treatment Overview factsheet... http://tinyurl.com/bqbrwr9

www.hep.org.au

complementary medicine treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24.

Complementary medicine

Similarly, people with genotype 2 or 3 and cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits.

You and your clinician should monitor your level of liver damage. Fibroscan is the preferred option, although in some cases, liver biopsy may be suggested. NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Phone the Hepatitis Infoline for the contact details of your nearest centre and to find out where your nearest Fibroscan is located. In NSW, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW For more information, please phone the Hepatitis Infoline and see our Two Hep C Questions booklet.

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects. A similar trial, but on a larger scale, was later carried out. A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (contact the Hepatitis Infoline regards the above-mentioned trials). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side effects? • Are they a member of a recognised natural therapy organisation?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and well experienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Infoline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW.

• How have the outcomes of the therapy been measured?

Hep Review magazine

For more information, please phone the Hepatitis Infoline.

Edition 85

Sept 2014

support and information services Hepatitis Infoline 1800 803 990 (freecall) For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Infoline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. Other services that can be accessed via the Hepatitis Infoline include: Hep Connect peer support program Hep Connect offers support and discussion with people who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Let’s Talk A free counselling service offering faceto-face, telephone and online sessions for people in NSW. There is a team of qualified counsellors, all with specialised knowledge of hep C. Live Well Group workshops that help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the healthcare system. Prisons Hepatitis Infoline A special phone service provided by the Hepatitis Infoline that can be accessed by New South Wales detainees and prison staff. Call this free and confidential service by using the prison phone or by calling the number above. Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au

www.hep.org.au

General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Infoline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Infoline. Family Drug Support FDS provides assistance to families to help them deal with drug issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card and they keep all medical records private.

support and information services Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Infoline distributes information resources in some languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au AHCS online hep C support forum Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au

Gosford: 5:00pm to 6:30pm on the 2nd Wednesday of each month at the Health Services Building, Gosford Hospital. Coffs Coast family and friends support group A self-directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend. The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30am and noon. The groups alternate between “mixed” and “womenonly”. Our aims for this group are to provide social support, information and encouragement to people affected by hep C. For more information please contact George Klein on 0411 028423. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750.

Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338.

Want to get involved in advocating for, or, supporting hepatitis services in your local area? Contact David Pieper, Hepatitis NSW C me Coordinator, at dpieper@hep.org.au

Hep Review magazine

Edition 85

Sept 2014

promotions The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.

Please phone 02 6198 9800.

A historical perspective – Headlines from 15 years ago • Hepatitis C Council of NSW launches our new website • Federal government renames its national BBV advisory body • Charges against Wayside Chapel minister dropped • Summarising the Australian national and NSW hep C responses • The SIC Quiz project of Wentworth Area Health Service • Hep C and disclosure • Hep C infection in children • Industrial liver disease • Milk Thistle as a therapy for liver disease • A history of the St Vincents Alcohol & Drug Service • Is your GP part of your support team? • CARRIER - hep C and art collide If you are interested in any of the above articles, phone the Hepatitis Infoline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 27, December, 1999.

www.hep.org.au

HALC

legal centre is now able to offer free help with hep C legal issues

HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with:

• Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. For more information, please visit www.halc.org.au or email halc@halc.org.au or telephone 02 9206 2060.

noticeboard

acknowledgements

CHAMPIONS UNITE

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Jeffrey Wegener

Want to find out the latest about hep C treatment, advocacy, harm minimisation, education, patient services and resources? Subscribe to The Champion e-Newsletter from Hepatitis NSW. Delivered to your email inbox once a month, The Champion is a great way to stay up to date on hep C-related events and developments across NSW. Share your views: if you sign up as a subscriber, you can even submit your own articles for publication! • To subscribe, just send an email to campaigns@ hep.org.au with your name.

Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Lisa Camillo, Prof Geoff McCaughan, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak

Proofreading/subediting: Wendy Beecroft Samantha Edmonds Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton Contact Hep Review by phone: 02 9332 1853 fax: 02 9332 1730 email: pharvey@hep.org.au post: Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in: Level 4, 414 Elizabeth St, Surry Hills, Sydney

Hepatitis Infoline: 1800 803 990

ED84 reader survey winner Congratulations to Tony from Wollongong who was the lucky winner of a $100 gift card. Tony was randomly chosen from the 58 readers who responded to our ED84 survey.

Weblink of the month

The World Health Organization has issued its first guidance for the treatment of hep C The WHO Guidelines for the screening, care and treatment of persons with hepatitis C infection coincides with the availability of more effective and safer oral hepatitis medicines, along with the promise of even more new medicines in the next few years. http://tinyurl.com/nv39uvt

Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to images, graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). These images are used for illustrative purposes only and they have no connection to hepatitis. Cover photos by Exposition by RAF

Hep Review magazine

Edition 85

Sept 2014

INFO

Hep Review 85

Articles inside

Support and information services

Clinical comment

Complementary medicine

Pharmaceutical treatment for hep C

Research updates

Reader survey form

Hello Hepatitis Infoline – To tell or not to tell

development work

The importance of regular liver assessment

dates and cinnamon

My story: Some valuable words of advice

Crimea crisis hits methadone hard

Walk a mile in my shoes: consider the darker side of hep C discrimination

Danella’s story: a secret in the family

Hep C and HIV co-infection: improved treatment outlook

C – the person not the disease

Online campaign to lift awareness of hep C

Australia urged to subsidise revolutionary new drugs as baby boomer crisis hits

Grant’s story: waiting for a new wave

World news

Hep Review magazine Edition 85 Sept 2014

Editorial – Assessing a viral hepatitis need

Hep C treatment as prevention: the Holy Grail or costly dream?

Eliminating hep C: acknowledging an ambitious but achievable goal

Australian news