Chapter 5: hepatitis C
Where we are now
In 2004, the Scottish Government recognised that " hepatitis C is one of the most serious and significant public health risks of our generation" (Chisholm, 2004). This followed the Royal College of Physicians of Edinburgh ( RCPE) Consensus Conference and Consensus Statement on Hepatitis C in 2004 ( RCPE, 2004), and the Scottish Needs Assessment Programme ( SNAP) Report in 2000 ( SNAP, 2000)
An estimated 39,000 people are currently living in Scotland with chronic (long-term) hepatitis C. More than half remain undiagnosed and 75% of those chronically infected are not currently in specialist care. Chronically infected people are at increased risk of serious liver disease and cancer. Yet treatment for hepatitis C, a combination antiviral therapy, is deemed highly cost effective by both the National Institute for Health and Clinical Excellence ( NICE) ( NICE, 2006) and Quality Improvement Scotland ( SIGN, 2006).
Accordingly, following extensive consultation with stakeholders, the Scottish Government launched the Hepatitis C Action Plan in 2006. The plan was completed in two phases. Phase I operated from September 2006 to March 2008 (Scottish Executive, 2006a). It focussed on increasing awareness and establishing the evidence base for hepatitis C, both in terms of the disease burden and the quality and quantity of services in Scotland, to inform proposals for future delivery. Phase II was published in May 2008 (Scottish Government 2008a) and was supported by significant Government investment for the period 2008-2011. It included 34 Actions which sought to significantly develop the quality and capacity of hepatitis C testing, treatment, care and prevention services in Scotland.
The Framework will continue to progress the key aims of the Hepatitis C Action Plan.
Where we want to be
The Sexual Health and Blood Borne Virus Framework recognises the need for ongoing and long term investment in hepatitis C to improve public health and wellbeing in Scotland. The Framework will build on the foundations established by the Hepatitis C Action Plan in 2008-2011 and, specifically, will continue to progress the key aims of that policy:
- to prevent the spread of hepatitis C, particularly among people who inject drugs;
- to diagnose hepatitis C infected persons, particularly those who would most benefit from treatment; and
- to ensure that those infected receive optimal treatment, care and support.
The Framework translates these aims into the high level Framework Outcomes:
Framework Outcomes: Hepatitis C
- Fewer newly acquired hepatitis C infections
- A reduction in health inequalities associated with hepatitis C
- People affected by hepatitis C lead longer, healthier lives
- A society whereby the attitudes of individuals, the public, professionals and the media in Scotland towards hepatitis C are positive, non-stigmatising and supportive.
The Multi-Agency Approach
Delivery of the Framework Outcomes will be underpinned by holistic pathways, person centred services and collaborative partnerships for hepatitis C prevention, treatment and care. These will operate in conjunction with care pathways to help people overcome drug or alcohol addiction through relevant harm reduction, treatment and rehabilitation services, referred to as "recovery orientated systems of care". Drug injecting remains the main transmission route for hepatitis C in Scotland and alcohol is a significant co-morbidity factor, accelerating the rate of liver disease in infected individuals.
The Framework acknowledges that although a significant proportion of those infected have recovered from drug and/or alcohol misuse, many are at different stages in their recovery. This is often associated with complex social care, medical and support needs that require to be addressed through partnership working across sectors if hepatitis C treatment is to be effective.
Local Managed Care Networks ( MCNs) and Prevention Networks
The infrastructure and initiatives established by the Hepatitis C Action Plan to improve capacity, consistency and the quality of service delivery in Scotland will continue and remain integral to the delivery of the Framework. These include: the national procurement of hepatitis C medicines and injecting equipment; local Managed Care Networks ( MCNs); Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b); local Prevention Networks encompassing hepatitis C; national workforce development; education and competency frameworks ( NHS Education for Scotland, 2010a,b,c); national information generating initiatives; and Healthcare Improvement Scotland Indicators (previously NHS Quality Improvement Scotland Standards) for hepatitis C.
A multi-agency approach to the prevention, testing, treatment, care and support of those living with hepatitis C remains essential. Local MCNs for hepatitis C and Prevention Networks encompassing hepatitis C (or equivalent for smaller NHS Boards) provide a forum for all partners ( NHS, Local Authority, Third Sector and those living with hepatitis C) to plan, design and implement the services which this Framework seeks to continue. Where appropriate, these networks have expanded to adopt a blood borne virus remit and have linked to their local planning structures ( e.g. Community Planning Partnerships, Alcohol and Drug Partnerships and Community Health Partnerships) in line with need and circumstance.
- The accreditation of local MCNs and the publication of Healthcare Improvement Scotland Indicators (previously NHS Quality Improvement Scotland Standards) for hepatitis Care expected within the first year of the Framework (2011/12).
Enhanced Links with Local Authorities and the Third Sector
It is essential that NHS (including Primary Care), Local Authorities ( e.g. education, community services, social work, housing), Scottish Prison Service and the Third Sector recognise and are acknowledged for the role and contribution they make to tackling all three blood borne viruses ( HIV, HCV, HBV).
- There should be strong links between Blood Borne Virus MCNs, Multi- Agency Sexual Health Strategy Groups, Alcohol and Drug Partnerships and Community Health Partnerships which, in turn, will feed into the Community Planning process.
- Where relevant, Local Authorities should link progress against Framework Outcomes to Single Outcome Agreements in conjunction with local partners.
- The Third Sector contribution should be further supported nationally through a Third Sector lead organisation for Viral Hepatitis, encompassing both hepatitis B and hepatitis C for Scotland.
The Sexual Health and Blood Borne Virus Framework National Co-ordinators will support this approach nationally, for example working in conjunction with the Convention of Scottish Local Authorities ( COSLA), Scottish Government National ADP Support Coordinators, the Third Sector Lead for Viral Hepatitis, Scottish Prison Service and appropriate Local Authority national bodies ( e.g. Association of Directors of Social Work).
Delivering the Outcomes
The following section details recommendations and strategies multi-agency partners should adopt to contribute towards delivery of each of the Framework Outcomes. Progress against Outcomes will be measured through the agreed set of national indicators (see Appendix 1).
Outcome 1: Fewer newly acquired blood borne virus infections.
The great majority of hepatitis C transmissions in Scotland occur within the Injecting Drug User ( IDU) population with approximately 90% of the infected population in Scotland having ever injected (refer to Evidence Table 5.1). Large numbers of people who inject drugs continue to be infected annually (estimated 1000-1500 in 2008/9). In comparison, transmission amongst people who do not inject drugs and other routes of transmission, including sexual transmission, occurs very infrequently.
Reducing transmission of hepatitis C amongst people who inject drugs remains the major focus of prevention activity in Scotland. The establishment of needle exchange in Scotland in the late 1980s was instrumental in curtailing the transmission of HIV in the injecting drug user population. Since 2008, additional monies have been provided to NHS Boards for injecting equipment and the Scottish Government National Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b) were published, through the Hepatitis C Action Plan. These improved the provision of injecting equipment (particularly paraphernalia) alongside education initiatives to reduce the sharing of injecting equipment during drug use preparation. A decline in needle/syringe sharing has been observed in recent years (see Evidence Table 5.1). However, although significant progress has been made, there remains a considerable shortfall in the amount of injecting equipment provided to people who inject drugs compared with the number of injecting events taking place (refer to Evidence Table 5.1).
- In line with Road to Recovery (Scottish Government, 2008f), the Scottish Government's strategy on tackling problem drug use, an ethos of recovery should be central to:
- the optimal uptake of sterile injecting equipment and safer injecting practises for those who currently inject; and
- access to optimal opiate substitution therapy, as part of a range of interventions available to help people recover from problem drug and/or alcohol use.
- Multi-agency partners should work together to continue to deliver effective local strategies, including:
- early diagnosis and treatment of those already chronically infected with hepatitis C;
- provision of an increasing range and number of needles, syringes and injecting paraphernalia to people who inject drugs in line with Scottish Government National Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b), utilising innovative approaches (including outreach) to enhance provision in a range of community settings ( e.g. community pharmacies, NHS, Local Authority and Third Sector services/facilities);
- education of people who inject drugs in the use of sterile injecting equipment for each injecting episode to promote a culture whereby, if someone is going to inject drugs, they do so using sterile equipment (needle/syringe, spoon, filter and water) on each occasion;
- delivery of peer-to-peer educational interventions to reduce initiation into injecting drug use and to highlight how onward transmission (spread) of the virus can be prevented. These should be aimed at vulnerable individuals, people who inject drugs, those at risk of starting to inject and people who inject that have been newly diagnosed with hepatitis C;
- provision of regular training, education and continuing professional development to ensure the competence of the health and non-health hepatitis C-related workforce, particularly those working with vulnerable groups, in the context of blood borne virus prevention. This should be provided in line with existing national frameworks for hepatitis C workforce development, education and competency ( NHS Education for Scotland, 2010a,b,c) and Recommendation 9 of the Scottish Government National Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b); and
- incorporating hepatitis C education into Curriculum for Excellence for all young people, particularly those most vulnerable, wherever learning takes place (in and out of school). This should be provided in line with Learning Teaching Scotland Hepatitis C Guidance for Educational Settings ( LTS, 2011) and equality and diversity legal obligations.
Outcome 2: A reduction in the health inequalities gap in sexual health and blood borne viruses.
Hepatitis C infection in Scotland is associated with deprivation and health inequality as a consequence of drug injecting, which remains the main transmission route in this country. Strategies adopted to reduce new transmissions amongst people who inject drugs (see Outcome 1) and to improve access to antiviral treatment to clear the virus (see Outcome 3) will help to reduce the pool of infection within the injecting drug user population in Scotland.
Inequality of access to services by people who inject drugs may result from lifestyle and environmental barriers ( e.g. prison, homelessness) and will be dependent on the strength of local MCNs, care pathways, relationships with alcohol and drugs partnerships ( ADPs), prison and Local Authority partners ( e.g. social work, community services, housing) to overcome these effectively.
- Multi-agency partners should work together to progress strategies to reduce health inequality associated with hepatitis C, including:
- local MCNs and care pathways for hepatitis C working closely and effectively with harm reduction, drug treatment and rehabilitation services to more effectively support people to access and complete antiviral treatment for their hepatitis C infection as part of their progress in overcoming and recovering from drug or alcohol misuse; and
- local MCNs and care pathways for hepatitis C which encompass service provision in a range of community and prison settings to optimise uptake, access and retention by people who inject drugs as part of an integrated person-centred approach.
Outcome 3 : People affected by blood borne viruses lead longer, healthier lives.
Raising awareness of hepatitis C amongst professionals and the public is a significant challenge. An estimated 39,000 people are currently living in Scotland with chronic (long-term) hepatitis C infection. At present, 50-60% of people chronically infected with hepatitis C remain undiagnosed (approximately 22,500). Of the 16,500 who are diagnosed, around 75% are not currently in specialist care. Nationally, a twofold increase in the annual number of diagnosed persons developing end-stage liver disease has been observed between 1999 and 2009 (see Evidence Table 5.2).
Through the Hepatitis C Action Plan, local MCNs for hepatitis C have been established and the capacity of testing, treatment, care and support services have increased significantly. This has affected a more than twofold rise in the number of people initiated onto antiviral treatment in Scotland from 468 in 2007/08 to 1,043 in 2010/11, as well as a increase in annual hepatitis C diagnoses (see Evidence Table 5.2) which the Framework will build upon.
- NHS Boards and their partners should work towards early intervention in order to reduce the number of hepatitis C infected people developing end-stage liver disease.
- NHS Boards and their partners should adopt approaches that ensure the great majority of people living with chronic hepatitis C are diagnosed and referred into specialist care. All partners are asked to work together with individuals living with or affected by hepatitis C to implement effective strategies that encompass:
- innovative approaches to improve access to hepatitis C testing, such as dry blood spot testing, in settings attended regularly by people who inject drugs ( e.g. drug treatment services, community pharmacies);
- case finding initiatives in conjunction with laboratories, GPs and specialist services to identify individuals who should be offered or recommend a test in line with SIGN Guideline 92: Management of Hepatitis C ( SIGN, 2006) , or encouraged to re-engage with services where a diagnosis has been made;
- sensitive and informed communication of test results and the provision of support throughout the testing and diagnosis process;
- awareness raising and peer to peer initiatives to promote the importance of hepatitis C testing and the availability and effectiveness of antiviral treatment in order to encourage test uptake among at risk populations, particularly current injectors and people who formerly injected drugs (noting past risk behaviour may be 10-20 years ago);
- awareness raising and other initiatives among migrant populations to encourage test uptake among people who have come from areas of high prevalence for hepatitis C such as Pakistan and other South Asian countries (Khokhar, Gill and Malik, 2004) (Khattak et al, 2002) (Parker, Khan and Cubitt 1999); and
- incorporation of annual hepatitis C testing into recovery plans of people attending drug and alcohol services, normalising testing as part of a person's recovery in line with Recommendation 14 of Scottish Government National Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b).
Treatment Care and Support
A holistic approach to treatment and care is essential in order to effectively support people living with hepatitis C to lead longer healthier lives. Provision of, for example, specialist clinical, mental health (psychological/psychiatric), drug, alcohol, social care, welfare and peer support services, are essential components of integrated care pathways. Together, these support and sustain people from the point of diagnosis to completion of their antiviral treatment and contribute to improved personal wellbeing.
The Hepatitis C Action Plan Phase II established local MCNs and care pathways for hepatitis C across Scotland, increasing treatment and care capacity to double the number of people receiving antiviral therapy. In doing so, NHS Boards improved the integration of their primary care, specialist addiction, prison and social care services through the locally established MCNs. However, not all NHS Boards have reached the same level of maturity in terms of service design and delivery following delays and challenges in recruitment.
The Framework will maintain and build on these foundations with multi-agency partners, linking to Community Planning, Alcohol and Drug Partnerships and Community Health Partnerships as appropriate to strengthen relationships between NHS, Local Authority ( e.g. social work, community services, housing) and harm reduction, drug treatment and rehabilitation services for those affected by substance misuse.
- All partners should further develop testing, treatment, care and support services to increase the numbers of people initiated onto therapy in Scotland each year to 1100 in 2011/12, 1150 in 2012/13, 1200 in 2013/14 and 1250 in 2014/15.
- A proportion (10%) of those initiated onto treatment each year will be prisoners.
- Thereafter, the numbers of people initiated onto therapy should continue to rise to at least 2000 each year, subject to review and in accordance with research on the impact of treatment on the chronic hepatitis C population and associated burden of disease.
- Work should be undertaken to further develop and locally accredit managed care networks and care pathways for people living with hepatitis C. This includes cooperative arrangements between the NHS and prisons, Third Sector and Local Authority partners to provide a continuum of treatment, care and support for those infected and living in the community and prison environments.
- NHS Boards and other partners should explore the feasibility and benefits of specialist treatment services that outreach into the community and prisons, led by specialist nurses, consultants or GP shared care ( e.g. in rural areas) to enhance referrals, attendance and clinical capacity. Notably, new medicines for hepatitis C ( e.g. protease inhibitors) are likely to render treatment more complex in future.
- The potential for the further procurement of hepatitis C medicines ( e.g. home delivery/joint purchasing/new medicines) to reduce costs to NHSScotland will be explored
- NHS Boards should explore the feasibility and strengths in establishing shared care arrangements with GPs, Local Authority ( e.g. social work, housing, community services) and Third Sector partners to provide a broader range of support in relation to lifestyle changes, welfare needs, mental health and treatment side effects to improve access to specialist services, retention and completion of antiviral treatment.
- NHS Boards should review and refine treatment provision to take cognisance of changing health care arrangements in prisons and new hepatitis C medicines, recognising that although hepatitis C treatment is highly cost effective ( NICE, 2006. SIGN 2006), it is evolving and new medicines ( e.g. protease inhibitors for particular strains of hepatitis C) are in development and due to enter the pharmaceutical market later in the lifetime of the Framework.
Outcome 5: A society whereby the attitudes of individuals, the public, professionals and the media in Scotland towards sexual health and blood borne viruses are positive, non-stigmatising and supportive.
Stigma and discrimination related to hepatitis C reflects public attitudes towards viral hepatitis, drug injecting and substance misuse generally. Such stigma and discrimination can present a barrier both to testing and access to services that provide treatment, care and support. Changing the culture in Scotland around viral hepatitis and drugs and alcohol is essential to ensure people living with or at risk of hepatitis C are able to feel that they are equal and valued members of our society.
Many people living in Scotland have a poor understanding of hepatitis C including how it is transmitted, the availability of treatment, life expectancy and the quality of life for someone living with the virus long term.
These are not easy issues to address and no single strategy or policy can successfully change beliefs or prejudices that may exist across a country. Through this outcome we aim to progress aspects within our control that may contribute to understanding and attitudes towards hepatitis C in Scotland including how it is portrayed in the media through local and national strategies.
- Efforts to promote a positive approach to viral hepatitis and substance misuse in the media should continue nationally and locally through linking in with media groups such as the National Union of Journalists and national broadcasting regulators.
- Hepatitis C education for all young people, particularly those most vulnerable, should be incorporated into Curriculum for Excellence wherever learning takes place (in and out of school). This should be provided in line with Learning Teaching Scotland Hepatitis C Guidance for Educational Settings ( LTS, 2011)and equality and diversity legal obligations.
- Work to promote awareness and understanding of hepatitis C should continue locally, regionally and nationally including:
- regular training, education and continuing professional development to ensure the competence of the workforce, encompassing anyone working with individuals or communities affected by hepatitis C, to improve knowledge and understanding of stigma and discrimination and promoting commitment to equality and diversity; and
- awareness raising and peer to peer initiatives to promote and normalise testing and treatment for hepatitis C as part of a persons journey and care pathway in recovering from drug misuse.
The Scottish Government will monitor progress on delivery of the outcomes through the Framework Indicators detailed in Appendix 1.
The Scottish Government including the National Co-ordinators, Special Health Boards and other national organisations will have key roles in progressing the achievement of the Framework Outcomes and supporting multi-agency partners. These roles are set out in Chapter 7.
Table 5.1 - Outcome 1: Fewer newly acquired blood borne virus infections
- It is estimated that 90% of Scotland's hepatitis C virus ( HCV) infected population has injected drugs.
- In 2006, the estimated number of current IDUs in mainland Scotland was 23,900, which compares to an estimated 18,700 current IDUs in 2003.
- In 2008-2009, the prevalence of HCV infection was 55% among IDUs who were interviewed at services providing injection equipment in Scotland and the incidence was estimated at 10-15 infections per 100 person years. This incidence rate translates to an estimated 1000-1500 IDUs having become infected with HCV.
- Among current IDUs in Scotland in contact with drug treatment services, a decline in needle/syringe sharing (either borrowing or lending a used needle/syringe) in the past month was observed from 27%-35% during 1995-2005 to 18%-22% during 2006-2009; further, a decline in only borrowing used needles/syringes in the past month was observed from 16% in 2006/07 to 11% in 2009/10. These findings are consistent with data obtained through surveys of IDUs in needle exchange settings
- Among current IDUs interviewed at services providing injection equipment in Scotland during 2008-2009, 15% reported having recently (last six months) injected with a needle/syringe previously used by someone else, while 48% reported having recently used other injecting paraphernalia (filters, spoons and water) that had previously been used by someone else.
- At least 4.1 million needles/syringes were distributed to IDUs in Scotland during 2008/09, which compares to the distribution of 3.6 million in 2005 and 4.3 million in 2007/08.
- Information on recent transmission, in the context of prevention initiatives implemented during the Hepatitis C Action Plan, is currently being obtained.
- There is a considerable shortfall in the amount of injecting equipment provided to IDUs. The estimated number of needles/syringes distributed to each IDU in Scotland during 2008/09 was approximately 170, and ranged from 110 to 360 across NHS Boards. The shortfall in sets of needles/syringes that need to be distributed to IDUs in Scotland, if the number of such sets is to correspond with the number of injecting events (estimated at around 500 per year), is approximately 8 million per year.
- Between 2008/09 and 2009/10, a several-fold increase in the number of sets of injection paraphernalia (filters and spoons/cookers) distributed to IDUs was observed in Scotland. This observation is related to the implementation of National Guidelines for Services Providing Injecting Equipment (Scottish Government, 2010b). and the provision of additional monies to NHS Boards, through the Hepatitis C Action Plan, to improve the provision of injecting equipment, particularly paraphernalia for drug use preparation.
- Data from IDUs surveyed in Amsterdam (Van Den Berg et al, 2007) indicate that the optimal intervention to prevent HCV transmission amongst this population involves a combination of opiate substitution therapy together with high levels of injection equipment provision ( i.e. a sterile needle/syringe for each injection); recent findings from the UK, including Scotland, are consistent with this observation.
- The incidence of HCV infection amongst persons who do not inject drugs is low and the scope for prevention of HCV infection among non- IDUs is limited.
Table 5.2 - Outcome 3: People affected by blood borne viruses lead longer, healthier lives
- In 2009, an estimated 39,000 people living in Scotland were chronically infected with the Hepatitis C Virus ( HCV); of these, 16,500 (42%) were estimated to have been diagnosed by the end of 2009, and 22,500 (58%) were estimated to remain undiagnosed.
- In 2009, approximately 2000 new HCV diagnoses were made in Scotland, which compares to approximately 1500 new diagnoses made each year in 2006 and 2007; this represents a 33% increase in the annual number of persons newly diagnosed with HCV between 2006-2007 and 2009. This relates to an increase in testing (and therefore diagnosis) over this period and does not equate to an increase in transmission of HCV.
- Among IDUs who were interviewed at services providing injection equipment in Scotland during 2008-2009, only 46% of those who were found to be infected with HCV (through anonymous testing) reported that they had been diagnosed with HCV.
- In 2009, 61 people in Scotland had developed end-stage liver disease ( i.e. were first hospitalised (58) or had died (3)) within one year of their HCV diagnosis. This figure compares to 41 people who had developed end-stage liver disease within one year of their HCV diagnosis in 1999. Among all HCV diagnosed people who had developed end-stage liver disease, the proportion of those who had developed end-stage liver disease within one year of their HCV diagnosis reduced from 46% (41/90) in 1999 to 33% (61/183) in 2009.
Treatment and Care
- Compared to an estimated 16,500 chronically infected people living in Scotland during 2009 who had ever been diagnosed with HCV, an estimated total of between 3500 and 4000 individuals had ever received antiviral therapy.
- Of the estimated 16,500 chronically infected people living in Scotland during 2009 who had ever been diagnosed with HCV, approximately 4000 (24%) had attended a specialist centre in 2009.
- The number of chronically infected people initiated on HCV antiviral therapy in Scotland increased from 468 in the financial year 2007/08 to 591 in 2008/09, 904 in 2009/10 and a provisional total of 1043 in 2010/11. The numbers initiated on antiviral therapy are in excess of the Hepatitis C Action Plan targets of 500 in 2008/09, 750 in 2009/10 and 1000 in 2010/11.
- Among patients (with either genotype 1, 2 or 3) initiated on pegylated interferon and ribavirin across nine clinics in Scotland during 2000-2007, 58% were known to have achieved a sustained viral response; this rate ranged from 39% among those with genotype 1 to 70% among those with genotype 2 or 3.
- In 2009, 183 people diagnosed with HCV in Scotland had developed end-stage liver disease ( i.e. were first hospitalised (176) or had died (7)), which compares to 90 HCV diagnosed people who had developed end-stage liver disease in 1999; this represents a twofold increase in the annual number of HCV diagnosed persons developing end-stage liver disease between 1999 and 2009.
NB: Whilst the document refers to 'people who inject drugs', the Framework data tables and indicators tables refer to IDU (intravenous drug user/s) population(s) as a recognised epidemiological term.