Clinical review of the impacts of hepatitis C

1. Background

In mid-2017, the Scottish Government asked Professor David Goldberg, Health Protection Scotland, to establish and preside over an expert group to assess the health and wellbeing of individuals, chronically infected with the hepatitis C virus (previously often known as Skipton “Stage One”) in Scotland through NHS blood transfusion/treatment with blood products, who had not progressed to advanced hepatitis C (previously often known as Skipton Fund “Stage Two”).

In April 2017 all i) living individuals who acquired HCV infection and/or HIV infection through blood transfusion/blood products and ii) widows/widowers/civil partners and other long-term partners of the deceased, who had received “ex-gratia” payments from the Scottish Government or UK Government Department of Health through the Skipton Fund or any of the four other UK wide funds who were identified as ‘Scottish’ beneficiaries, transferred to a new Scottish Scheme – the Scottish Infected Blood Support Scheme ( SIBSS), run by NHS National Services Scotland ( NSS).

As at March 2018 there were 510 beneficiaries of the scheme (table 1). One hundred and fifty (150) had, or were widows/widowers/partners of deceased individuals who had progressed to, advanced hepatitis C (cirrhosis/hepatocellular carcinoma/B Cell lymphoma/liver transplant); these are defined as advanced hepatitis C ( HCV) beneficiaries. Three hundred and twenty eight (328) had, or were widows/widowers/partners of deceased individuals who had not progressed to, advanced Hepatitis C (chronic infection and no evidence of advanced hepatitis C); these are defined as chronic HCV beneficiaries. An additional 32 had HIV or were co-infected with HCV and HIV or were widows/widowers/partners of deceased individuals in those categories ( 1 ).

All chronic and advanced HCV beneficiaries have received lump sum payments and advanced HCV individuals receive an annual payment. Beneficiaries with chronic HCV do not receive this annual payment; they are, however, eligible for Support and Assistance grants.

A UK Review (2010) of the Support Available to Infected Individuals with Hepatitis C and/or HIV by NHS-supplied Blood Transfusion or Blood Products and their Dependants acknowledged that i) advanced HCV has a substantial impact on life expectancy and causes a substantially reduced (and deteriorating) quality of life and ii) chronic HCV is associated with a demonstrable loss in quality of life ( 2 ).

Patient representatives of individuals infected through blood transfusion/treatment with blood products have argued that there is inequity regarding annual payments because the current arrangements do not take into account the broader impacts of hepatitis C on health and wellbeing among individuals with chronic hepatitis C – impacts which can be harder to quantify in clinical terms. It is in this context that a clinical review of the impacts of hepatitis C on those affected by infected NHS blood has been established.

Table 1: Distribution of SIBSS beneficiaries by application type and award recipient type, data to March 2018