Hepatitis C (HCV) is one of the main causes of liver disease, the third most common cause of premature mortality in England. NHS England recently announced the ambition for England to be the first major country in the world to eliminate HCV by 2025 as medical advancements mean >95% of HCV patients can now be cured in 12 weeks or less. However, elimination is dependent on actively finding the estimated 160,000 infected, primarily injecting drug users, and ensuring they are treated.
The HCV care pathway is fragmented and under-resourced and only by working in partnership across health and social care is elimination possible. For this reason, Gilead Sciences entered into a first-of-its-kind collaboration with CGL, the largest provider of DTS in England who is commissioned to test service users for HCV and refer.
Gilead provides an expert Patient Access to Care (PAC) team, funding and resource to CGL to build HCV capability and partner with NHS England’s Operational Delivery Networks (ODNs) to remove barriers and simplify the referral pathway. Outcomes to date include a 36% increase in HCV testing, 45% increase in referrals, more patients being treated in community settings and more efficient use of NHS resources. The partnership is creating a simpler, cost-effective pathway and way of working that drives elimination within CGL by 2025.
54% of people who inject drugs (PWIDs) are HCV+ with transmission via shared injecting equipment. Due to PWIDs chaotic nature, services that rely on traditional models of secondary care do not work, with many patients not attending hospital appointments. This is costly, consuming NHS resources and leading to poorer patient outcomes.
Existing pathways between CGL and the NHS were not linked effectively, and as the NHS is not always able to decentralise resource to provide care locally, the system was over-reliant on ‘heroes’ to work around barriers to care.
The collaboration between Gilead, CGL, and NHS is to improve patient outcomes by enabling CGL service users to have the simplest, shortest and most effective path from testing to cure focusing on:
1. Building CGL organisational HCV focus and capability
2. Data integrity and monitoring monthly performance to assess for further interventions
3. Drive testing by training CGL (awareness, testing techniques and phlebotomy), alongside raising service users awareness on testing, treatment and future harm reduction
4. Gilead PAC team working in partnership with NHS ODNs to review data, optimise pathways, support clinical services within CGL and move towards a test and treat model relieving pressure on NHS referral times and patient non-attendances.
Against the priorities, between May and October across 65 CGL sites;
1. CGL organisational capability - Team of HCV Co-ordinators and data analysts in place
2. Data integrity and monitoring performance - Monthly review and management process in place to ensure learnings are communicated and outcomes achieved
3. Drive testing and offer update - 1200 staff trained in DBST. 52 Service user events. An additional 1700 service users tested (36% increase above baseline). 45% increase in referrals
4. Working in partnership with NHS - 85% of services now have an onsite clinic
The key challenges have been ensuring across the board data accuracy, continued testing momentum, resources to treat and removing pathway barriers to ensure those diagnosed can access treatment quickly. To mitigate these risks the team continues to work together with clinicians, reinforce training, raise awareness and monitoring data to put inventions in place.
E.g. in one service 0 HCV+ patients were linked to care. Through the partnership all the CGL staff were trained, the pathway reviewed with NHS and onsite service developed. Best practise work agreements were put in place and service user events held to encourage testing. This resulted in 17 patients linked to care in one month.
The collaboration is based on developing a model that works in key CGL sites then replicating this across all 65 services. Gilead and the CGL coordinators worked with 18 “trigger” sites (chosen on impact, location, service user groups, data collection etc.) to overcome barriers and put processes in place to test and treat HCV patients effectively. Established learnings were then rolled out to the entire CGL organisation.
Every quarter service status reports are shared with each of the 22 NHS ODNs to see the impact being made and where further interventions can take place to support the test and treat model. An example of this is the work currently underway training 64 CGL nurses in phlebotomy so service users who show antibody-positive results can have their blood taken at the CGL site without requiring an NHS nurse or additional hospital outpatient appointment.
In 2019 we are looking at ways we can work with commissioners to take the service model and best practice and roll this out to other DTS providers across England. At Gilead, we are confident that this successful investment and working directly with DTS providers and ODNs, together we can partner to drive pathway optimisation at scale.
By ensuring those at risk are tested and treated within appropriate community settings we can vastly improve the number of patients successfully achieving a cure, benefit NHS in reprioritising resources, move care from hospital to the community and make big steps towards elimination and reducing premature mortality from liver disease e.g.;
1.85% of CGL sites now have onsite clinics. CGL Morecombe went from 0 testing to testing all their caseload and identified 32 HCV+ cases, onsite clinic established and they are on the way to micro-eliminate HCV
2. Overall an additional 1700 service users tested (36% increase). CGL Stockton/Middlesbrough moved from testing <15 a month to 300 service users over 3 months (50% of their caseload) and established a bespoke clinic with NHS to treat all HCV+
3. Across CGL 1200 staff trained in DBST. In London and the South CGL have trained 20 teams and 8 onsite clinics. >100 HCV+ clients started treatment and >70 have completed treatment
4.To support specialist services CGL are training >60 nurses in phlebotomy reducing waiting times and reducing NHS resource required and in some areas CGL can book patients directly into clinics reducing waiting times from 5 months to 8 weeks.
Through this partnership, Gilead engaged with key health and social care stakeholders across the NHS, CGL and Local Authorities. The approach is reliant on NHS buy-in and contribution to ensure the pathway design works for their region and providing clinical support and guidance to build capability within the CGL sites. Through continued engagement and refinement of the programme the results are steadily coming through.
CGL has worked closely with NHS ODNs to communicate the impact being made. Quarterly reports are in place summarising the test and treat data and where interventions can be put in place to improve patient outcomes. Gilead communicates regularly with NHS to ensure that as we continue to refine the programme and remove the barriers NHS benefits and together we make progress towards eliminating HCV.
‘CGL believes that by working together with Gilead, we can enhance case finding of service users who have Hepatitis C and develop clear pathways into treatment. This unique partnership is early in development but there is already a clear improvement.’ CGL Medical Director ‘Strategy to engage with CGL nationally is a good one. crucially it funds people, rather than infrastructure or tests, which would have been doomed to fail’. ODN Lead.