17 November 2022: Panel on finding the undiagnosed - A

Another panel of leading medics were assembled to address the issue of how to find people who are still undiagnosed. There was one from each of the four nations: Professor Graham Foster (England); Professor John Dillon (Scotland); Doctor Brendan Healey (Wales); and Dr Joanne McLean (Northern Ireland).

As usual, for each witness there was a brief review of their respective roles and responsibilities. The situation in England started with a description of the HCV elimination initiative and its arrangement involving the pharmaceutical companies which was lauded by the English witness but seemed curious. For their cooperation, the pharma companies get anonymous, headline data on patients. There is a three phase elimination programme in England. Phase 1 is about oral therapies. Phase 2 is about risk groups. It involves an incentivised process to encourage the identification by re-engagement with patients who had had a positive test but had not been treated. It involved about 50,000 people. People were contacted either directly or via their GP, but the audit was interrupted by Covid. The target groups included IV drug users and homeless people. It was stated that England have offered treatment to all patients involved with Haemophilia Centres. Phase 3 is a cocktail of six activities: 1) testing in primary care; 2) an online testing portal (especially useful for people who do not want to disclose how they might have been infected); 3) testing in emergency departments (currently happening across London, then Brighton, Blackpool, Manchester, and beyond); 4) Liverpool surplus blood testing (they have 17,000 blood samples which were taken for other purposes and will test them for HCV … with permission/consent?); 5) a case-finding search tool (for GPs to use to identify people at risk, but the data rules are complex and not yet worked through, and GPs are under a lot of pressure); 6) research to identify prevalence in people who would not be found through the case-finding search tool (a joint project seeking to randomly test certain people). The overall aim is to understand who and where the people are who might be undiagnosed to inform the ongoing work to be done. It may be there are not many people who remain undiagnosed, or there will be a need to set out a plan to identify and treat as many of those who want to be. There is a sense that the total number of those already treated is greater than those who may remain to be identified and treated, but they are not being complacent. “How many HCV people are missing and what is the opportunity cost of seeking them?” was seen as a key question. Those judgements are important since for every focus on one group it may mean another group are missing out. For England, there was a question about possibly prioritising people infected by contaminated blood for treatment. The witness said there was not a blanket priority due to the mode of acquisition, and it had never happened like that. Fibro-scan access had previously been described as “patchy”. The demand is going up for Fibro-scans, but there are alternative ways of assessing for cirrhosis. There was a question about the need for research on the anti-viral treatments previously used. The English witness thought this was reasonable. He said they do not actually know the lifetime impact of HCV itself.

For Scotland, each Health Board has been mandated to have a clinical lead for hepatitis. These clinical leads meet two or three times a year. The Hepatitis C Action Plan Phase 1 was launched in 2006, and Phase 2 in 2008. Money went to Health Boards to have testing and treatment resources to deliver the Plan. On the focus on identifying people, there is no overarching plan for Scotland, in part because the circumstances in the Health Boards are so different. In 2019 the Scottish Government launched its Hepatitis C Elimination Strategy. Between 2006 and 2018 there has been a 45% reduction in people living with chronic HCV (down from 38,000 to 21,000). There was also a 55% reduction in people unaware of their infection (down from 23,500 to 10,500). Liver failure presentations were overall down by 67% (from a peak of 141 in 2013 to 47 in 2018), cancer down 69% (from 58 in 2016 to 18 in 2018), and HCV-related deaths down 49% (from a peak of 67 in 2015 to 34 in 2018).

(At this point the Northern Ireland video link went down so a slightly early break was called.)