1. #LJWG2015 HEPATITIS C IN PEOPLE WHO USE DRUGS Improving Care for Hepatitis C: A Framework Approach LONDON 2015

2. #LJWG2015 Hepatitis C Coalition: Policy and parliamentary developments Professor Mark Thursz Hepatology, Faculty of Medicine Imperial College London Chair, Hepatitis C Coalition

3. What is the Hepatitis C Coalition? Our aim is to secure coordinated action to reduce deaths from hepatitis C and turn the tide on liver disease mortality in the UK. We call for close working between NHS England, Public Health England and the Department of Health to give the elimination of hepatitis C the collaborative focus it requires. If successful, simple actions taken now could reduce hepatitis C related liver cancers and deaths by 50% by 2020. Together, we could eliminate the disease within a generation. The Hepatitis C Coalition is a group of leading clinicians, patient organisations, professional groups, industry and other interested parties committed to the reduction of morbidity and mortality associated with hepatitis C and its eventual elimination. The Hepatitis C Coalition has funding from Bristol-Myers Squibb, Gilead Sciences and Merck Sharp & Dohme.

4. The role of the Hepatitis C Coalition The Coalition agreed a set of objectives for 2015 to guide its campaigning activities and responses to policy and parliamentary developments Serving as a clear vehicle for more formal collaboration across the sector Maximising the impact of engagement with collective voice and regular communication with key policymakers Focusing on an agreed programme of recommendations for national policy Providing a regular forum for policy updates and insights

5. Coalition membership Observers Existing members Chaired by Prof. Mark Thursz Clinical, patient and industry members Key policymakers attend as observers

6. The Coalition’s policy platform Co-produced by Coalition members Published in November 2014 Eight recommendations Clear agenda and set of messages

7. Parliamentary and policy developments in 2015

8. Looking back: 2015 policy developments 2015 held a number of challenges and opportunities for hepatitis C and associated services 2015 General Election NHS England Five Year Forward View Overarching policy context Financial challenges Pressure within specialised commissioning budgets Public health budget cuts Efficiency savings needed New strategic direction Health to be delivered closer to patients’ homes Political change New Government set to make its mark National improvement framework Service specification developed Prison Opt-out BBV testing roll- out Hepatitis C policy New curative medicines becoming available Penrose Inquiry final report published Ministerial Summit on TB and Hep C Westminster Hall debate on Hep C Operational Delivery Networks launched

9. Policy developments in the devolved regions Scottish Sexual Health and Blood Borne Viruses Framework update “I am pleased to say that Scotland is committed to eliminating hepatitis C as a public health problem within Scotland – something that I am proud that we can realistically commit to achieving only because of the foundation work we have laid over the past ten years.” - Shona Robison MSP, Cabinet Secretary for Health + Wellbeing Penrose Inquiry final report published Welsh Liver Disease Delivery Plan The Welsh Government and NHS Wales have published their strategy for liver disease services over the next five years, titled ‘Together for Health – Liver Disease Delivery Plan.’ Priorities in the delivery plan include to “take forward the legacy of the Blood Borne Virus Hepatitis Action Plan in all relevant settings and continue the effort to eradicate viral hepatitis.”

10. State of play: hepatitis C in the UK report 2015 Public Health England’s Hepatitis C in the UK Annual report for 2015 was published on 28 th July, coinciding with World Hepatitis Day. The executive summary of the report concludes: “Action plans and work programmes have driven improvements in the prevention, diagnosis and treatment of HCV across the UK, however, more needs to be done as the morbidity and mortality from HCV-related liver disease continues to rise.” Findings of the report this year: Last year: 214,000 people are infected with chronic hepatitis C. 214,000 424 premature deaths due to cancer and cirrhosis of the liver caused by hepatitis C. 428 175 liver transplants because of cancer and cirrhosis of the liver caused by hepatitis C. 124 2,658 hospital admissions due to untreated hepatitis C. 2,390 “Deaths from hepatitis C related end stage liver disease and liver cancer have doubled over the last decade– the majority occurring in people under the age of 60 years. In an era of curative treatments and prevention options, we must question whether this is acceptable.” Dr Mary Ramsay Head of immunisation, hepatitis and blood safety department Public Health England. “Deaths from hepatitis C related end stage liver disease and liver cancer have doubled over the last decade– the majority occurring in people under the age of 60 years. In an era of curative treatments and prevention options, we must question whether this is acceptable.” Dr Mary Ramsay Head of immunisation, hepatitis and blood safety department Public Health England.

11. Looking ahead: 2016 policy environment 2016 holds a number of challenges and opportunities for the health service in general and hepatitis C services in particular Devolution agenda Overarching policy context NHS financial challenge Specialised commissioning changes Roll out of opt-out testing Hepatitis C policy The national programme of opt-out testing for blood-borne viruses in prisons is being rolled out Early performance will need to be assessed and lessons learned and diffused across the service Operational Delivery Networks New model for delivery of hepatitis C services introduced in August 2015 Performance will become clearer in months ahead May be systematic or financial barriers to their successful operation National Improvement Framework Scottish and Welsh bespoke activity Greater Manchester is likely to take a new approach New methods in England Divergent approaches across UK English policymakers have committed to producing a national improvement framework for hepatitis C A partnership approach to producing the framework is giving way to greater NHS England dominance The framework will need focus on implementation New models of care Ongoing tariff deliberations

12. An Outline of the Coalition’s work plans The Coalition’s work plan for 2016 should drive forward progress on the recommendations in the ‘A Vision for Change in Hepatitis C’ document Considering the effectiveness of ODNs and how their potential can be maximised in future Following the 2015 election, engaging with new MPs, Ministers and Civil Servants and reinvigorating its existing relationships Learning from policy and outcomes in the devolved regions, creating impetus for an Improvement Framework in England Review and reframe calls for elimination of hepatitis C

13. The Hepatitis C Coalition is a group of leading clinicians, patient organisations, professional groups, industry and other interested parties committed to the reduction of morbidity and mortality associated with hepatitis C and its eventual elimination. The Hepatitis C Coalition has funding from Bristol-Myers Squibb, Gilead Sciences and Merck Sharp & Dohme. The secretariat for the Coalition is provided by JMC Partners

14. #LJWG2015