This quarterly newsletter provides a concise summary of developments in hepatitis C for policymakers, clinicians, commissioners, local government, charities and others with an interest in hepatitis C or public health.
Updates will also be included from the Coalition’s diverse membership, which includes patient organisations, professional bodies, clinicians, industry and other interested parties.
Contaminated blood scandal inquiry announced
Prime Minister Theresa May has announced the establishment of an inquiry into the contaminated blood scandal, which led to patients contracting hepatitis C and HIV. The inquiry announcement follows the publication of a letter by the Westminster leaders of six opposition parties, in which they called for the Prime Minister to launch an investigation into alleged criminal conduct linked to the scandal.
The announcement came prior to an emergency debate in the House of Commons, led by Diana Johnson MP, Co-Chair of the All Party Parliamentary Group on Haemophilia and Contaminated Blood. The inquiry will establish the causes of the scandal, with the victims’ families to be consulted about what form the inquiry should take, with options including a public ‘Hillsborough-style’ inquiry or a judge-led statutory inquiry.
The Hepatitis C Coalition’s response is as follows:
_The Hepatitis C Coalition welcomes the long overdue Government’s announcement of a full independent inquiry into the contaminated blood scandal, and praises the work of Diana Johnson MP and Andy Burnham, for their determined efforts to bring it about so that patients’ voices can be truly heard. We support Ms Johnson’s call for the inquiry to encompass the scandal in its entirety, from lead-up to aftermath, and echo her call for the victims to be consulted fully.
The contaminated blood scandal led to around 6,000 people being infected with hepatitis C and some 1,500 being infected with HIV. As a campaign group of leading clinicians, patient organisations, professional groups and other interested parties committed to reducing hepatitis C-related illness, we look forward to a thorough and open investigation._
WHO releases global report on viral hepatitis
The World Health Organisation (WHO) released its first global report on hepatitis this month, calling for countries to work together to tackle viral hepatitis.
The report laid out for the first time a picture of viral hepatitis around the world, with WHO estimating that viral hepatitis was responsible for 1.34 million deaths in 2015.
The report focuses on hepatitis B and C, which are responsible for 96% of all hepatitis morality, and puts the number of people chronically infected with hepatitis B or C at 325 million worldwide.
“Viral hepatitis is now a major public health challenge that requires an urgent response,” said WHO Director General Margaret Chan.
The report highlights how failure to diagnose hepatitis infections – just 9% of hepatitis B infections and 20% of hepatitis C infections were diagnosed in 2015 – coupled with a lack of access to affordable treatments, is resulting in millions of people facing chronic liver disease, cancer and death.
As well as detailing hepatitis prevalence, the report outlines some successful steps countries are taking to tackle hepatitis that could be replicated elsewhere. In Egypt, for example, market-price competition has reduced the cost of a three-month cure for hepatitis C from $900 in 2015 to less than $200 in 2016.
The report can be read here.
National AIDS Trust joins the Hepatitis C Coalition
We are delighted that the National AIDS Trust has joined the Hepatitis C Coalition as a member.
London Joint Working Group ‘Understanding Barriers’ Report
The London Joint Working Group on Substance Use and Hepatitis C (LJWG) will soon be publishing a report called ‘Understanding Barriers to Data Collection and Onward Referral’. More details to follow on their website.
London Joint Working Group Key Indicators and Pathways: Pharmacy Testing Project Phase 1
The London Joint working Group on Substance Use and Hepatitis C (LJWG) has launched the LJWG Pharmacy Testing project. This will aim to support current data collection by providing an insight into the need to diagnose and treat people currently injecting drugs. Aiming to impact transmission and reinfection by identifying infection hot spots and potential treatment networks to facilitate access to diagnosis and treatment for this vulnerable mobile population.
- Point of contact testing by identifying patients potentially eligible for treatment in community pharmacies that offer needle exchange.
Partner with the ODN’s in different London boroughs to identify novel pathways for both identification of the viral burden and developing strategies to best target resources.
Support active case finding in the identified pilot pharmacies.
Aim to determine if the model of treating drug user networks could potentially be applied to the London population and reduce transmission as indicated by research in Scotland.
Provide information to the CCG’s and public health regarding the services they will be required to fund.
Identify pathways and barriers in each pilot from testing in the needle exchange, and to accessing assessment and treatment through the ODN.
Objectives from NHS Point of view
The key benefits for the NHS will be offering information on patient preference for testing in a population with high transmission rates of hepatitis C, who find services difficult to access. The project will support ODN’s by highlighting potential hot spots of transmission, so that people at most risk of infection and development of end stage liver disease (ESLD) and liver cancer (HCC) are identified and treated. Reducing high cost pressures for CCG’s as the disease develops and supporting WHO and PHE’s aim to eliminate hepatitis C as a public health threat by 2030.
Hepatitis C Coalition ODN visits
The Hepatitis C Coalition has continued its ODN visits over the second quarter of the year, travelling to Brighton to meet with Dr Jeremy Tibble, clinical lead for the Sussex Hepatology Network, and network manager Ali McKinlay. It was a lively and enjoyable discussion, which will make a valuable addition to the ODN report version 2.0.
The Coalition will be visiting Leeds on 19th July to meet Dr Mark Aldersley, clinical lead for the West Yorkshire network, to discuss the strengths and challenges of the ODN.
Drugs, Alcohol and Justice Cross-Parliamentary Group meeting
A meeting of the Drugs, Alcohol and Justice Cross-Parliamentary Group took place on Wednesday 12th July in Parliament. The guest speaker was Kevin Jaffray, who works for the national Naloxone Action Group as an advocate for Naloxone, a drug that reverses opiate overdoses, and who was featured in an article in the Guardian about how overdose deaths have hit record levels as drug and alcohol services face massive cuts.
The session was co-chaired by Lord Ramsbotham and Mary Glindon MP, and was well attended by representatives from the substance use community and parliamentarians including Liz McInnes MP, Ruth George MP, Liz Saville-Roberts MP, Norman Lamb MP and a representative for Sharon Hodgson MP. Peers present included Lord Ponsonby and Lord Rea and Baroness Howe and Baroness Meacher.
There was lively and productive discussion around the group’s new Charter for Change, which sets out what it is calling upon the Government to do.
HCV Action will be holding an ODNroadshow in Leeds on 6th September and a workshop in Bristol on 14th September.