Minutes of meeting held on Tuesday 9th March 2021
Attendees
Sir David Amess MP – Co-Chair, APPG on Liver Health
Baroness Randerson – Co-Chair, APPG on Liver Health
Baroness Masham of Ilton – Co-Chair, APPG on Liver Health
Jeff Smith MP – Vice Chair, APPG on Liver Health; Co-Chair, APPG on Drug Policy Reform; and Co-founder, Labour Campaign for Drug Policy Reform
Crispin Blunt MP – Co-Chair, APPG on Drug Policy Reform; and Chair, Conservative Drug Policy Reform Group
Graham Parsons – Chief Pharmacist and Hepatitis C Lead, Turning Point
Baroness Finlay of Llandaff – House of Lords
Lord Sarfraz – House of Lords
Alex Worrell – Parliamentary Researcher, Jeff Smith MP
Amber Moore – Senior Researcher, Conservative Drug Policy Reform Group
April Wareham – Director, Working with Everyone
Professor Ashley Brown – Consultant Hepatologist, Imperial College Healthcare NHS Trust; and Clinical Lead, West London Hepatitis C Operational Delivery Network
Benjamin Roberts – Fellow, Parliamentary Office of Science and Technology
Brian Gunson – Advisor, Liver4Life
Christen Savage – Account Executive, Incisive Health
Danny Morris – Midlands & West Regional Manager, The Hepatitis C Trust
Deborah Moores – National Hepatitis C Co-ordinator, Humankind
Dr Emily Phipps – Consultant Epidemiologist, Public Health England
Frances Luff – Senior Director, Government Affairs UK & Ireland, Gilead Sciences
Dr Helen Harris – Research Associate/Clinical Scientist – Epidemiology, Public Health England
Jamie Bridge – Chief Operating Officer, International Drug Policy Consortium
Dr Judith Yates – International Doctors for Healthier Drug Policies
Kate Halliday – Executive Director, SMMGP/FDAP
Katy Sharrock – Research and Policy Officer, NAT (National AIDS Trust)
Dr Laura Garius – Policy Lead, Release
Lisa Byrne – Community Pharmacy Substance Misuse Manager, Surrey County Council
Louise Hansford – South Coordinator, Hep C U Later
Dr Mark Aldersley – Consultant Hepatologist, St James’s University Hospital; and Clinical Lead, West Yorkshire Hepatitis C Operational Delivery Network
Peter Keeling – Campaigns Officer, Collective Voice
Rachel Halford – Chief Executive, The Hepatitis C Trust
Richard Hanford – Secretariat, Drugs, Alcohol & Justice Cross-Party Parliamentary Group
Sam Shirley-Beavan – Research Analyst, Harm Reduction International
Simon Morton – North Coordinator, Hep C U Later
Aidan Rylatt – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)
Iona Casley – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)
Noah Froud – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)
- Welcome and introductions (Sir David Amess, Co-Chair)
Sir David Amess welcomed all attendees to the meeting and invited those present to introduce themselves via the chat box.
- Overview of the Labour Campaign for Drug Policy Reform (Jeff Smith MP – Vice Chair, APPG on Liver Health; Co-Chair, APPG on Drug Policy Reform; and Co-founder, Labour Campaign for Drug Policy Reform)
Jeff Smith MP, speaking on behalf of the Labour Campaign for Drug Policy Reform, argued that a prohibitionist approach to drug use has not worked. This approach has resulted in unnecessary criminalisation of individuals, empowerment of criminal gangs and severe health impacts on individuals, including rates of drug-related deaths that make the UK the “drug deaths capital of Europe”. Jeff noted that when Portugal moved from a criminal justice approach to drugs to a harm reduction-based approach, there were fewer drug-related deaths, diagnoses of blood-borne viruses and incarcerations. Jeff called for politicians to work together on the issue and referred to the Labour Campaign for Drug Policy Reform’s recommendations, published in September 2020, following an inquiry conducted by the group.
- Overview of the Conservative Drug Policy Reform Group (Crispin Blunt MP –Co-Chair, APPG on Drug Policy Reform; and Chair, Conservative Drug Policy Reform Group)
Crispin Blunt introduced the Conservative Drug Policy Reform Group and his motivation for establishing the group, informed by his experience as Prisons Minister which led to his support for drug decriminalisation. Crispin argued that the prohibitionist approach ingrained by the Misuse of Drugs Act 1971 has had an enormous cost to society, with hepatitis C infections being just one example of the widespread damage done by current drug policy. Crispin said that ministers needed to be better informed about the evidence on drug policy, and that debate around drug policy needs to be depoliticised and dragged into the mainstream.
- Harm reduction, drug policy and hepatitis C (Graham Parsons – Chief Pharmacist and Hepatitis C Lead, Turning Point)
Graham Parsons of the substance use service provider Turning Point delivered a presentation on the importance of harm reduction for individuals using drugs.
Graham explained that harm reduction refers to policies, programmes and practices that aim to minimise negative health, social and legal impacts associated with drug use, drug policies and drug laws. Evidence-based interventions like opioid substitution therapy (OST) and needle and syringe programmes have been shown to reduce hepatitis C and HIV infections, alongside myriad other benefits to individuals using drugs.
Despite the evidence of its effectiveness, Graham told the group that such provision has reduced in recent years due to funding challenges, a situation that has been exacerbated by the impact of Covid-19, which has seen fewer people accessing exchanges and fewer overall transactions.
Innovative approaches to providing harm reduction approaches, such as Turning Point’s offer of postal testing for BBVs, have been introduced but more support is needed to ensure optimal harm reduction services can be provided.
- Questions and discussion
Baroness Finlay asked why the increased availability of naloxone had not led to a decrease in drug-related deaths. Graham responded that the rise in deaths had complex causes (such as the ageing cohort of users and availability of certain drugs) and that the number would almost certainly be higher without naloxone. He pointed to a forthcoming report by the Advisory Council on the Misuse of Drugs on the use of naloxone.
Baroness Randerson agreed on the need to “de-weaponise” drug policy in the political sphere and asked Jeff and Crispin how much support they had from colleagues within their respective political parties. Crispin noted that there had been shifts in attitude to drug policy, with the existence of the Conservative Drug Policy Reform Group itself evidence of this. Jeff noted that many politicians are privately supportive but may only feel comfortable changing their public stance when they believe public and press opinion has changed. He also pointed out that politicians are cautious due to fear that their words can be taken and weaponised by the media and political opponents.
Dr Emily Phipps of Public Health England pointed out the importance of data collection in monitoring equitable access to low-dead space syringes (LDSS). Graham replied that the delivery of needle and syringe programmes is currently fragmented and there needs to be a national programme feeding into the National Drug Treatment Monitoring System (NDTMS). He also said that all services should provide LDSS as they are NICE recommended, though not all do.
Rachel Halford of The Hepatitis C Trust asked how we can make sure there are robust harm reduction interventions to support hepatitis C elimination. Speakers agreed that a harm reduction approach is vital and noted the negative impact of time-limited prescribing of OST, reduced harm reduction funding and an excessive focus on recovery over harm reduction.
In final comments, Jeff said that politicians needed to listen to the experts in the field, and Crispin said that researchers and campaigners needed to stand up and get politicians to listen to the evidence pointing to drug policy reform.
- AOB and close
Sir David Amess thanked the speakers and all those who attended and noted that another meeting would take place before the parliamentary summer recess, with details to be circulated by the secretariat in due course.
Minutes of meeting held on Wednesday 27th January 2021
Attendees
Sir David Amess MP – Co-Chair, APPG on Liver Health
Baroness Masham of Ilton – Co-Chair, APPG on Liver Health
Baroness Finlay of Llandaff – House of Lords and Chair, Commission on Alcohol Harm
Rebecca Wilkinson – Public Health Registrar, Public Health England
Dr Judy Wyatt – Consultant Histopathologist, Leeds Teaching Hospitals NHS Trust
Dee Cunniffe – Policy Lead, London Joint Working Group on Substance Use and Hepatitis C
Janine Aldridge – Public Affairs Officer, The Royal College of Pathologists
Professor Ashley Brown – Consultant Hepatologist, Imperial College Healthcare NHS Trust and Clinical Lead, West London Hepatitis C Operational Delivery Network
Dr Emily Phipps – Consultant Epidemiologist, Public Health England
Hannah Bowes-Smith – Parliamentary Assistant, Baroness Finlay of Llandaff
Dr Helen Harris – Research Associate/Clinical Scientist – Epidemiology, Public Health England
James Campbell – North and West Cumbria Peer Support Lead, The Hepatitis C Trust
Laura Wetherly – Government Affairs Manager, AbbVie
Peter Shand – Associate Director, Government Affairs UK & Ireland, Gilead Sciences
Ross Harris – Statistician, Public Health England
Dr Samreen Ijaz – Virologist, Public Health England
Dr Sema Mandal – Consultant Epidemiologist, Public Health England
Simon Morton – North Coordinator, Hep C U Later
Sue Reilly – North East Peer Lead, The Hepatitis C Trust
Pamela Healy OBE – CEO, British Liver Trust
Louise Hansford – South Coordinator, Hep C U Later
Iona Casley – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)
Aidan Rylatt – Policy and Parliamentary Adviser, The Hepatitis C Trust (Secretariat)
Apologies
Baroness Randerson – Co-Chair, APPG on Liver Health
Lord Brooke – Vice Chair, APPG on Liver Health
- Welcome and introductions (Sir David Amess, Co-Chair)
- Perspective on liver health as a clinical expert (Dr Judy Wyatt, Consultant Histopathologist, Leeds Teaching Hospitals NHS Trust)
Dr Judy Wyatt introduced herself and the Royal College of Pathologists, the professional membership organisation for pathologists. She provided the group with an overview of a pathologist’s perspective of liver disease. There are 600,000 people with some form of liver disease in England and Wales, of whom 60,000 have cirrhosis. Liver disease leads to 1,000 liver transplants and 10,000 deaths each year, with around a quarter of these caused by non-alcoholic fatty liver disease (NAFLD).
Liver function tests (LFTs) are widely used to identify possible problems with the liver: 25% of adults have had LFTs in the last 10 years, and 30% of LFT requests through GPs have highlighted at least one abnormality. Dr Wyatt emphasised that intervening early on in the pathway is really important, including by promoting healthy lifestyles, raising awareness among clinicians and the public, and eliminating hepatitis C and hepatitis B.
Dr Wyatt then provided some information about the liver biopsy process. The sample extracted from the liver during the biopsy must be large enough to contain relevant diagnostic features, and this has been easier to achieve in recent years due to medical advancements. There has also been a big effort to join up a best practice approach to liver biopsies, leading to the development jointly by the British Society of Gastroenterology, the Royal College of Radiologists and the Royal College of Pathologists of guidelines last year.
Dr Wyatt also noted the need for continual training and assessment. The Liver EQA scheme aims to address this by arranging for more than 100 histopathologists to be sent a dozen liver biopsies to comment on. While their comments are anonymous, they are able to compare their diagnosis with those of their colleagues, and there is potential to identify “persistent poor performers”, promoting standards of subjective diagnosis.
The diseases seen in biopsies have changed greatly over the last 10 years. Hepatitis C was much less common in 2019 compared to 2011, and the role of biopsies within this timeline has changed. Where biopsies were used to determine whether people with hepatitis C had severe enough damage to warrant their going on interferon-based treatment in the 2000s and early 2010s, after the development of new, more tolerable and effective treatments to in 2015 this was not necessary.
Diagnoses resulting from biopsies have more recently tended towards NAFLD, with 40% of samples indicating rarer liver disease. Liver cancer has increased four-fold in 40 years, and by 50% in the last decade, rising up the list of common cancers both in men and (to a lesser extent) in women. Dr Wyatt cited one NHS Trust where one third of specimens from liver biopsies were found to include cancer.
Improved diagnostic pathways and improved surveillance have been positive developments in recent years. However, only 3% of histopathology departments say they have adequate histopathologists, and many of those that do work in the departments are over 55 and likely to retire soon. Dr Wyatt highlighted a need to roll out digital pathology, build up the workforce and improve information technology. One example of the latter would be for slides of the liver to be able to be scanned in digitally and uploaded on a server for many histopathologists to have access to, rather than just the one person on duty at the hospital.
Dr Wyatt told the group that there had been a big fall off in rates of liver medical biopsies in 2020, though liver resection, liver transplant biopsy and biopsy of tumour had not been as impacted.
Sir David thanked Judy for her talk and asked for her slides to be circulated through the group’s Secretariat. Prof Ashley Brown commented on the reduction in hepatologists conducting biopsies. Judy agreed that often younger hepatologists had not been trained in performing biopsies due to a streamlined pathway, noting that the increase in radiologists performing liver biopsies had resulted in much smaller sample sizes, though this had been improved due to training in recent years.
- Hepatitis C interventions for the homeless population during Covid-19 (Rebecca Wilkinson, Public Health Registrar, Public Health England and Dee Cunniffe, Policy Lead, London Joint Working Group on Substance Use and Hepatitis C)
Rebecca Wilkinson introduced the work that Public Health England (PHE) has been doing through the pandemic to evaluate the hepatitis C interventions for homeless populations in areas of England outside of London. Life expectancy for people who are homeless is incredibly low, and hepatitis C is a particular problem: a survey of people who inject drugs found that while 17% of respondents had hepatitis C, this more than doubled to 35% for people who also reported homelessness in the last year.
Rebecca said that Covid-19 had had a big impact on hepatitis C testing and treatment: testing fell by 38%, and this was even more pronounced in drug services. A lower positivity rate indicated that those at highest risk might be missing out on testing. In addition, treatment initiation was much lower.
When 15,000 people rough sleeping were temporarily housed during the first lockdown, service providers took the initiative to reach out to people at a time when the relative stability afforded them by stable housing might make it easier for them to engage in healthcare services. Due to the speed at which urgent outreach services were set up, there was no national co-ordination and so data was collected locally according to different protocols and requirements. The evaluation was therefore also informed by qualitative research, including structured interviews with ODN staff, peer workers, and hepatology nurses, as well as a survey developed with HCV Action sent out to all of The Hepatitis C Trust’s peer workers.
The evaluation found that all areas that responded to the survey were conducting outreach work in the summer of 2020. There was a 64% uptake rate in the settings with an estimate of the number of people being housed resulting in 1,263 people tested. Of these, 224 were found to have antibodies for hepatitis C, while 133 were found to have an active infection. Ninety-two people were offered treatment, and 83 had started at the time of analysis, although this number will have increased since the analysis was conducted. Rebecca congratulated the services on an amazing achievement, particularly at a time when everything was very disrupted.
The evaluation emphasised the importance of building strong partnerships, such as between hostels, acute NHS Trusts, drug and alcohol services, voluntary agencies, community services, sexual health services etc. It also noted that, from the data analysed, working with peers appeared crucial to the success of the testing and treatment interventions because of peers’ ability to increase clients’ engagement in initiatives. Overall risk assessments and other resources made it much quicker to pivot to deliver the interventions, as did being flexible and innovative (e.g. by supplying pan-genotypic drugs, handing out cheap mobile phones so people could be followed up with results/treatment, and setting up testing tents in hotel car parks).
In addition, Rebecca said it was still important to promote messages around testing, such as that it does not necessarily require venous bloods being taken and that treatment is no longer interferon based. Incentives were used by lots of providers, and it will be important to continue monitoring their effectiveness. A whole-health approach was seen to be crucial, for example including screening for other diseases such as Covid-19. While additional screening and signposting risks delaying things, this could be mitigated by strong partnerships. Finally, Rebecca explained how collecting data and conducting evaluations was crucial to monitoring the service, and highlighted that PHE were able to support local services in undertaking this.
Rebecca concluded by referring to HCV Action’s December peer survey which shows that many areas are still doing this kind of homeless outreach work, so evaluation remains very relevant. PHE’s evaluation of hepatitis C testing and treatment interventions for homeless populations in England (outside of London) can be read here.
Dee Cunniffe then presented to the group on the evaluation by the London Joint Working Group on Substance Use and Hepatitis C (LJWG) on the hepatitis C testing and treatment interventions delivered to homeless populations in London. Dee said that early on the LJWG identified the risk that services might rush out to do the outreach work without gathering any data. This resulted in a pan-London dataset for services to log what hotels they had visited and the results of the whole-venue testing events. The log meant that services could coordinate with peers to promote engagement. Over 1,000 of the 5,000 people temporarily housed during the pandemic were tested for hepatitis C between May and August 2020, of whom 7% were identified as requiring treatment. Dee highlighted that many of those tested were newly homeless and therefore not representative of the usual cohort targeted for hepatitis C testing. Additionally, five people were found to have hepatitis B, and 22 people were found to have HIV, of whom half had been unaware of their infection.
The LJWG’s evaluation found that the hepatitis C interventions broke down barriers to partnership working and led to the development of a whole-venue approach to testing, which has since been picked up by The Lancet and will be included in a comment piece to be published shortly. The LJWG’s evaluation of hepatitis C testing and treatment interventions for homeless populations in London can be read here.
- AOB and close
Sir David Amess thanked all those who attended and invited members to the next meeting of the APPG, provisionally due to take place on Wednesday 3rd March 2021 at 4pm (TBC).
Past meeting minutes are available on request.