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Hepatitis Queensland Strategic Plan 2016-2021

Viral hepatitis —

A NEW ERA

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


OUR VISION A Queensland free from the effects of viral hepatitis

OUR MISSION To provide a holistic, innovative and pro-active response to the challenges confronting those affected directly and indirectly by viral hepatitis

HQ SERVICES HQ is a not-for-profit, non-government, community organisation and provides: • • •

A free and confidential telephone information and support service Support and information for people affected by viral hepatitis Free brochures, fact sheets, DVD’s and newsletters on viral hepatitis

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


FOREWORD This strategic plan has been produced in the midst of some incredible changes in the viral hepatitis landscape. Interferon-free direct acting anti-viral medications for the treatment of chronic hepatitis C (HCV) have been listed on the Pharmaceutical Benefits Scheme. In a world first, these far more effective and less toxic treatments have been made available to everyone in Australia with chronic HCV, regardless of their disease stage. The vast majority of those previously ineligible for interferon based treatments because of comorbidities such as mental illness can now be treated. And those whose treatment was previously unsuccessful have a fantastic second chance! All this for the cost of a normal prescription. While HCV treatment has previously been confined to specialists, general practitioners can now prescribe. These drugs—and those following on behind them—have the potential to eliminate viral hepatitis C as a health issue in our state. They are a game-changer. While it’s HCV treatments that have hit the headlines, there have also been significant changes for chronic hepatitis B (HBV). Anti-HBV medications, though not curative at this point, have been shown to prevent progression to cirrhosis and hepatocellular carcinoma (liver cancer). These treatments are life-long. So changes to dispensing rules which allow those affected to fill their prescriptions at community pharmacies rather than in hospitals make life a whole lot easier. Representing the interests of close to 100,000 Queenslanders affected by viral hepatitis B or C is our brief, and Hepatitis Queensland has to respond. As outlined in this Strategic Plan, key priorities over the next five years are to increase awareness of the new treatments and to do what we can—working with government, Primary Health Networks, Hospital and Health Services, other health organisations, and the community itself—to boost access. This is a big challenge. Prior to 1 March 2016, only about 1% of those affected with chronic HCV were being treated each year. With HBV, only a third of those who need treatment are receiving it. Substantially increasing the numbers treated is the only way to halt the rise in illness and death due to liver failure and liver cancer. There are other challenges too. Those affected by viral hepatitis feel and face ongoing stigma and discrimination. HQ wants to tell the stories of those affected by viral hepatitis through their own words, and help to breakdown the corrosive impact of negative stereotypes and misconceptions. Supporting and promoting ‘hep positive’ speakers and experiences will be a core HQ activity. Chronic hepatitis B remains under-recognised in more ways than one. Only around 50% of those who have chronic HBV have been diagnosed. Increasing testing rates for HBV are needed, and HQ will be working together with the key at-risk communities in Queensland to address this. Significantly for Hepatitis Queensland, the place of viral hepatitis in policy and funding priorities in Queensland does not yet reflect need, and has not been commensurate with that directed towards other blood borne viruses.

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


The “end of AIDs” was proclaimed in Australia in mid-2016. This is an incredible outcome and a testament to the determination within, and the resourcing of, the HIV sector. That same commitment could also see the ‘end of HCV’ and make big inroads into death and disability from HBV. Hepatitis Queensland will advocate strongly for appropriate recognition and resourcing for viral hepatitis in all spheres of interest and funding, so that those affected by HBV and HCV receive best practice care and the support they need. In constructing this strategic plan, the Hepatitis Queensland Board and CEO have recognised some guiding principles to underpin our role and activities: • • • •

The importance of partnerships and collaboration in maximising our effectiveness; Avoiding duplication and sharing resources where possible rather than starting from scratch; Building HQ’s financial sustainability by diversifying our funding base; and Identifying and addressing the gaps in policy and services.

The plan outlines four strategic priorities on which Hepatitis Queensland will focus. Annual business plans, to be developed by the CEO, will guide the operationalisation of the strategic plan and list key steps to be met on the way to achieving our goals. We see the Hepatitis Queensland strategic plan as complementing, but not defined or limited by, the Queensland Health Viral Hepatitis Action Plan. For us, addressing viral hepatitis in the community is more than treating a virus. It is about treating a person. We hope that you will read our strategic plan and be inspired to join us in our mission to meet the challenges confronting the Queensland community affected by viral hepatitis.

Dr Alison Stewart President

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


“Getting a diagnosis of hepatitis B is not the end of the world … but not getting one could be”. As someone who has lived with chronic hepatitis B for at least 30 years, I have followed the amazing progress that has been made in the understanding and management of this condition. We now have treatments that can control the virus and once a person is in proper care, there is a good chance they will be okay. I am one of these lucky people. But I could have easily become an unfortunate statistic. I had a long phase—almost 20 years—following my diagnosis when it was just easier to ignore the fact that I had a chronic condition, followed by some anxiety when I finally decided to do something. At that point I got a nasty surprise and reality hit. I was already beginning to develop liver cirrhosis. The next feelings were frustration when I had issues with drug resistance, and then calm when the treatment finally worked and my liver recovered. Looking back, my message is clear: don’t wait! Go and get things checked out and under control. The only reason I am here and healthy today is because I woke up one day and decided I had to be pro-active. My dream is for all people living with chronic hepatitis B to have the same opportunity but current treatment rates are still very low. One of Hepatitis Queensland’s missions is to help increase the rates of diagnosis and treatment and overcome the many challenges in achieving this—especially stigma and discrimination. The key is education, education and more education: making people aware that getting a diagnosis of hepatitis B is not the end of the world, but that not getting one could be.

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


Our Priorities Recognition and appropriate resourcing of viral hepatitis as a health priority Desired Outcome Funding levels support operational and research programs that improve integrated responses to prevention, screening and treatment

Strategies • • • • • • •

Lobby and advocate to influence government policy and funding priorities Engage with Primary Health Networks, Hospital and Health Services, government departments and other bodies to gain recognition Work with other organisations to potentiate our message Leverage support through the media Develop and deploy innovative social media campaigns Produce an annual report on the overall progress of the Queensland response to viral hepatitis and the contribution made by Hepatitis Queensland Improve recognition of viral hepatitis B as a chronic disease requiring life-long monitoring across all target populations and by government

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


Eradication of stigma and discrimination for those affected by hepatitis B and C Desired Outcome a. Stigma and discrimination are no longer barriers to seeking or receiving health care b. World Hepatitis Day becomes a significant public event in Queensland

Strategies • • • • • •

Active use of positive images and stories of those affected by viral hepatitis Support recruitment and utilisation of Queensland Positive Speakers Bureau speakers Source funding for projects to eliminate stigma and discrimination Secure funding for World Hepatitis Day Provide individual advocacy Contribute to Hepatitis Australia’s systemic advocacy campaigns

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


Increase the number of Queenslanders with chronic hepatitis C who receive treatment Desired Outcome At least 50% of the affected population is treated by 2021

Strategies • • • • •

Encourage those previously diagnosed to seek the new direct acting anti-viral treatments Provide a one-stop-shop for consumers and clinicians navigating the treatment pathway Partner with Primary Health Networks, Hospital and Health Services and training and education providers to develop new models of care and educate health practitioners Collaborate with key stakeholders to develop education and treatment for prisoners Deploy social media to increase awareness of treatments and encourage initial testing

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


Increase the numbers from at risk populations accessing testing and monitoring for hepatitis B Desired Outcomes a. 90% of those who have chronic hepatitis B are screened and diagnosed by 2021 b. 100% of those diagnosed are being monitored according to best practice guidelines c. 50% increase in the numbers with chronic hepatitis B virus who require treatment receiving it Strategies • • • • • •

Collaborate with Culturally and Linguistically Diverse communities and Aboriginal and Torres Strait Islander communities to increase awareness of the need to test for hepatitis B Establish an active Hepatitis Queensland network of community leaders that will encourage testing Foster hepatitis B positive speakers Advocate for improved case surveillance for hepatitis B Develop collaborative research projects to examine hepatitis B screening and monitoring activities in general practice Collaborate in primary care clinical education to improve hepatitis B screening focussing on general practitioners serving Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse communities Investigate opportunities to implement “point of care” testing for hepatitis B

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au


“I can see a different future without hepatitis C” A bit about me: I am a 50-year-old married mum of two, living the suburban dream :) How did I get Hep C? I dabbled very briefly in IV drug use—I’d say half a dozen occasions at the age of 19 and I was diagnosed at age 27. I tried pegylated interferon in 2006 or thereabouts. The treatment was not successful and I did not feel at all well during treatment, or for a while after finishing. The physical side effects were very strong, coupled with the emotional and mental impact due to the disappointment of not clearing the virus. Life went on... In the last six to 12 months I have started to feel more unwell and quite anxious about the future. In 2009 I cared for a close relative who was HCV positive and died from liver cancer. I cared for her at home for the last six weeks of her life and saw first-hand the ravages of this disease when left untreated. The timing for her wasn't great. She was a heavy drinker and I have also been a social drinker all my adult life. Strangely enough, even though I knew that alcohol was toxic in my condition and would contribute to the progression of liver damage, I still drank—not heavily but regularly. Looking back, I see that fatalistic thinking had created a significant block to making a positive change. The minute I found out that I was eligible for this new treatment, I stopped drinking alcohol and do not miss it one bit. The magic bullet? Hope and support. Access to this treatment and the probability of a positive outcome, including clearing the virus and arresting further damage to my liver, have significantly affected my outlook on life and how I see my future unfolding. It helps that the success rate is so high and the side effects are minimal. My GP is a major support and I'm very grateful to access treatment through this patient-GP relationship. It makes a huge difference to me. I'm now very hopeful about the possibility of a radically different quality of life in future.

Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020

PO Box 3490, South Brisbane QLD 4101 info@hepqld.asn.au www.hepqld.asn.au

Hepatitis Queensland Strategic Plan 2016-2021  
Hepatitis Queensland Strategic Plan 2016-2021  
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