Cynulliad Cenedlaethol Cymru	National Assembly for Wales
Y Pwyllgor Iechyd, Gofal Cymdeithasol a Chwaraeon	Health, Social Care and Sport Committee
Ymchwiliad i Hepatitis C	Inquiry into Hepatitis C
H04
Ymateb gan Abbvie	Evidence from Abbvie

AbbVie submission: Health, Social Care and Sport Committee inquiry into Hepatitis C in Wales

January 2019

Key facts:

· It is estimated that 12,000 people in Wales are living with hepatitis C (HCV)[i].

· Over the last two years, NHS Wales has treated more than 1,300 individuals achieving a cure rate of 95%[ii].

· In the last financial year (2017/18) the target to treat was 900, but only 578 (64%) patients received treatment[iii].

· It is estimated that 5000 people in Wales have been diagnosed with HCV but have not yet received treatment or cleared the virus[iv].

· Following the implementation of opt-out BBV testing in prisons, only around one third of prisoners have been screened. It is estimated that one in ten prisoners are HCV positive[v].

· The Welsh Government has signed up to the WHO commitment to eliminate hepatitis C as a public health concern by 2030. NHS England has announced its intention to achieve this by 2025.

Recommendations

· At the current rate of treatment, Wales is unlikely to meet the WHO target to eliminate hepatitis C as a public health concern by 2030. A renewed approach is required.

· In order to achieve elimination, AbbVie believes that a national HCV elimination strategy is required which is supported by a clear delivery plan.

· A public health awareness campaign should link people directly into services where they can be tested and treated without delay.

· An elimination strategy should share examples of good practice in developing services that reach out to at-risk groups and support the establishment of community based services across Wales.

· The primary focus for an elimination strategy should be within drug and alcohol services and in prisons where a high proportion of people are infected with HCV.

· The Welsh Government should develop a micro-elimination strategy for prisons which includes opt-out HCV testing in all prisons, increased investment in clinical staffing, and explore opportunities to introduce in-prison link worker services that support prisoners into treatment whilst in prison or upon release.

1. Background

1.1. The NHS in Wales has worked hard to treat all patients diagnosed with HCV but the challenge is to find those who remain undiagnosed. Estimates of HCV prevalence are uncertain therefore more work needs to be done to provide a more detailed and accurate data on prevalence.

1.2. However working on the basis of a prevalence of 12,000 patients: if treatment rates remain the same as 2017/18 (578) it will take 20 years to achieve elimination in Wales. If services were to achieve the current target of 900 patients in treatment each year, Wales would still miss the WHO target by at least one year. An accelerated approach to elimination by 2025 would require 2000 patients to be treated annually.

At the current rate of treatment, Wales is unlikely to meet the WHO target to eliminate hepatitis C as a public health concern by 2030. A renewed approach is required.

1.3. The introduction of new oral treatments - which offer shorter treatment duration with few side-effects and a high cure rate - have transformed how HCV services can be delivered, yet treatment in Wales is still predominantly focussed within secondary care and those services that are community-based are fragmented and variable by health board.

1.4. Competitive tendering processes have significantly reduced the cost of treatment. There is an opportunity to reinvest these savings into driving increasing treatment numbers, improving case finding and developing community-based treatment models.

1.5. Clinicians across Wales are committed to delivering elimination and are developing innovative approaches to case finding, testing and treatment. However progress is variable across health boards. In order to achieve elimination strong political leadership is required. A national elimination strategy, led by ministers and supported by protected budgets will ensure that where good practice exists it can be shared and a co-ordinated approach to elimination can be adopted.

1.6. AbbVie is committed to working with the Welsh Government and NHS to support initiatives to increase treatment numbers and deliver HCV elimination.

2. Welsh Health Circular (WHC/2017/048)

2.1. In 2017, the Welsh Government issued a health circular which set out requirements for NHS Boards to achieve elimination by 2030, requiring them to put in place measures to:

- Reduce and ultimately prevent ongoing transmission of HCV within Wales;

- Identify individuals who are currently infected with HCV including those who have acquired HCV outside the UK and are now resident in Wales; and

- Test and treat individuals currently infected with HCV who are actively engaged in behaviours likely to lead to further transmission.

2.2. While this circular is clear in its intention, the document does not include any targets, timescales or funding to support health boards in the delivery of these objectives. Neither does it address the need for centralised data capture in order to measure progress towards targets.

2.3. A strategic approach to elimination should address the key activities of disease awareness, prevention, case-finding, treatment and support spanning the range of public services including NHS (primary and secondary care), community drug and alcohol services, homeless services and prisons.

In order to achieve elimination, AbbVie believes that a national HCV elimination strategy is required which is supported by a clear delivery plan.

3. Disease Awareness

3.1. Making elimination a practical reality will require increased efforts to raise awareness of the risks of HCV infection. The greatest risk of infection is among people who inject drugs and therefore it is vital that any disease awareness campaign targets this population as a priority but it is challenging as this is a group of society who may not be engaged in existing NHS services.

Working with Cardiff and Value University Health Board, AbbVie launched a three month pilot disease awareness campaign in the city of Cardiff. The campaign placed poster adverts in GP surgeries, bus stops and public toilets, encouraging people to go for testing if they thought they may be at risk.

3.2. Research conducted by AbbVie among people who inject drugs found that there was a lack of awareness of the new oral treatments for HCV which offer a short treatment duration, minimal side-effects and high cure rate. Historically treatments had been long and onerous with a lower risk of cure. Raising awareness of the new oral treatments could encourage people who have been diagnosed to come forward for treatment.

3.3. However a public health campaign will only be of benefit once a community service infrastructure is in place.

A public health awareness campaign should link people directly into services where they can be tested and treated without delay.

4. Raising professional awareness of hepatitis C

4.1. As services adapt and become more community focused, maintaining a high standard of care and professional education is important. This is particularly the case in HCV where there remain a number of myths and stigma attached to the condition.

4.2. There is a need for greater knowledge and understanding of hepatitis C outside of traditional secondary care settings, particularly in primary care where continuing professional development and training tools should be considered. There is also a clear role for third sector providers to support the work of the NHS to identify and support people into treatment. The Hepatitis C Trust could be supported to engage with the healthcare community, Public Health Wales and other third sector providers to explore opportunities for development.

4.3. In Scotland, community pharmacy plays a key role in the dispensing of oral treatments for patients with hepatitis C. This model provides a community based service which provides clinical engagement with service users.

Working with the Royal Pharmaceutical Society, AbbVie has developed an online educational tool for specialist pharmacists working in HCV services. We are now working with stakeholders in Wales to develop a community pharmacists training programme to increase awareness of HCV and available treatments.

5. Finding the right patients

5.1. It is estimated that there are 12,000 cases of hepatitis c in Wales almost half of which are undiagnosed. While the NHS has done well to treat patients who are already diagnosed and known to the system, the challenge remains to identify those living with the condition but who are not diagnosed or who have dropped out of the system.

5.2. Increasing community nurse specialists to drive HCV elimination in community-based services and targeted micro-elimination within specific groups is an approach that is already proven. For example in Cardiff, the work of community nurse leads has seen an increase in the number of patients tested and treated each month.

5.3. An elimination strategy must ensure that those with the highest risk of transmitting HCV are targeted. It is estimated that more than a quarter of all people who inject drugs are infected with hepatitis C[vi]. Therefore community based services must focus resources on testing and treating people who inject drugs, who may be sharing drug injecting equipment, and should consider alternative routes to treatment and care pathways. There should also be a new approach to find, test and treat patients; supporting them to remain in contact with services.

5.4. There is clear agreement across the clinical community that patient pathways need to be modernised to reflect the evolving treatment landscape. An elimination strategy must provide for pathways that enable more timely community based treatment, for example in community pharmacy or community drug and alcohol services. These changes would help to reduce transmission and avoid situations where patients are diagnosed but clinicians are unable to treat them. It is also clear that more a more community based model would be better able to ensure that patients complete treatment and don’t get lost after diagnosis.

An elimination strategy should share examples of good practice in developing services that reach out to at-risk groups and support the establishment of community based services across Wales.

6. Prison healthcare

6.1. It is conservatively estimated that one in ten prisoners are HCV positive. In April 2018, the prison population in Wales was 4291[vii]. If the estimated prevalence is correct, the HCV positive prison population could account for as many as one in 20 of all HCV cases in Wales.

6.2. Providing testing and treatment to prisoners whilst they are incarcerated provides an opportunity to make significant progress towards elimination yet HCV services in prisons remain woefully under-resourced.

6.3. Opt out testing for prisoners was introduced in Wales in 2016, however implementation remains variable due to workforce and capacity issues within the prison healthcare service.

6.4. AbbVie has been working with HMP Cardiff to develop an accelerated pathway for testing and treatment of prisoners with HCV. However, this has been challenging to implement due to staff changes, bureaucracy and competing health demands.

6.5. In Wrexham, there are 1000 prisoners, but there are only two nurses providing one clinic per month.

6.6. Providing peer-to-peer support services and access to treatment for prisoners can provide a holistic care model that supports prisoners into services that enable them to clear the disease while in prison or linking them into support services in the community upon release.

In Scotland, Waverley Care, an HIV and Hepatitis C charity, is running a pilot programme, supported by AbbVie, which embeds a community link worker within HMP Barlinnie and Low Moss prisons in Glasgow. The aim is to engage and support prisoners with a HCV diagnosis whilst in prison and upon liberation into the community, ensuring there is continuity of care and that the individual is not lost to the system.

The Welsh Government should develop a micro-elimination strategy for prisons which includes opt-out HCV testing in all prisons, increased investment in clinical staffing, and explore opportunities to introduce in-prison link worker services that support prisoners into treatment whilst in prison or upon release.

7. Conclusion

7.1. Clinicians across Wales are working hard to identify and treat people living with hepatitis C; however this work is variable across the country.

7.2. Estimates of at least 400 prisoners and one quarter of injecting drug users infected with HCV confirms that there is a clear need to prioritise testing and treatment within these target populations.

7.3. The new oral treatments for hepatitis C present a unique and rare opportunity to eliminate a serious public health challenge. However services continue to be focused on hospital-based care. There needs to be a concerted effort to move care into the community to support improvements to case-finding and increased treatment numbers – which will be required if Wales is to meet the challenge to eliminate the virus by 2030.

7.4. Identifying hepatitis C as a public health priority requires political support and the development of an elimination strategy for Wales will provide the strategic leadership required to make this a reality.