In 2010, following a High Court ruling, the Government was compelled to review a decision to ignore certain recommendations made in the Archer Report of 2009. In January 2011 Andrew Lansley announced the review, claiming he hoped it would bring closure to those affected. He said "For too long those people infected with hepatitis C have received different support to those infected with HIV. We now intend to make the financial support for hepatitis C patients fairer and more comparable to the arrangements for those infected with HIV."
The real truth is that only 20% of HCV victims, those in the so-called stage 2 category, were awarded ongoing financial assistance similar to that of HIV victims. The remaining 80% received ABSOLUTELY NOTHING AT ALL.
The payments were based purely on a proven level of liver damage, despite conclusive evidence and experience that HCV causes serious damage to health in addition to liver disease. The announcement caused dismay, devastation and extreme anger for those affected - certainly not "closure". By 2011, the ex-gratia payment awarded to stage 1 victims back in 2004 equated to around £1.75 per day* since time of infection - a cruel insult. (*Calculation based on 30 years since time of infection therefore less for those infected before 1980.)
For the victims excluded from ongoing financial support, the Caxton Foundation was set up, a charity that might supply vouchers for a cheap washing machine if someone proves poverty and begs hard enough - insulting, to say the least.
In the case of Hepatitis C victims who died before August 2003, Lansley's 'closure' package included a small one-off payment for bereaved families if they could prove that the death was from illness caused by contaminated blood or blood products. This was impossible to prove for many because medical records were extremely difficult to track down or had already been destroyed. To make things even more difficult, Lansley gave a deadline of just a few months for the families to make their claims. A further blow was dealt to the contaminated blood community in that Lansley made no change to the measly level of ongoing payments already in place for HIV victims, thus the few Hepatitis C victims who were included in the package were awarded the same pittance as those with HIV.
Far More Than Liver Disease
In the document released by the DoH in January 2011, entitled 'Review of the Support Available to Individuals Infected with Hepatitis C and/or HIV by NHS-Supplied Blood Transfusions or Blood Products and Their Dependants', the reference section lists ninety-four research articles consulted by the expert panel, only nineteen of which addressed the subject of extra-hepatic manifestations (EHMs). Only one EHM, non-Hodgkin's Lymphoma (NHL), was included in the criteria for the stage 2 payment. Clearly, the remaining eighteen research papers on EHMs were ignored.
Contaminated Blood Campaign have obtained, under the Freedom of Information Act, a research article that was discussed by the experts, but not listed in the review document reference section. It contains conclusive evidence of the damaging effects of the Hepatitis C virus on the brain. Why did the Department of Health withhold this research paper from the reference list in the review document?
In the minutes of the Government's consultation with the expert panel, prior to the review, the experts themselves said "it would be pragmatic to assume that all who had chronic Hepatitis C infection would experience neurocognitive effects". This alone, coupled with the chronic fatigue that affects all sufferers, seems sufficient reason to provide equal financial support for all who have Hepatitis C, not just those with cirrhosis. How can anyone earn a decent living whilst challenged constantly by neurocognitive impairment and fatigue? In addition to neurocognitive challenges there are numerous other EHMs that prevent sufferers leading a normal life.
The list of EHMs considered in the review are present in HCV victims regardless of whether or not cirrhosis is present.
Extra-hepatic manifestations (EHMs) considered in the review but ignored:
- side effects of treatment
- neurocognitive impairment
- mixed cryoglobulinaemia
- porphyria cutanea tarda
- insulin resistance
- type 2 diabetes
- impaired cerebral function
- The EHMs listed above do not reflect all available research. Numerous EHMs were not even considered in the review Again, they all exist whether or not fibrosis/cirrhosis is present.
- These are some EHMs associated with HCV and not considered in the review
- rheumatic and joint problems
- vitamin D deficiency
- gallstone disease
- lung disease
- heart disease
- autoimmune disease
- irritable bowel syndrome.
- Numerous links between HCV and EHMs are very strong, and some not so strong, but the same can be said for cirrhosis. Research consulted by the expert panel showed that cirrhosis in HCV sufferers can be exacerbated by excess alcohol consumption, yet it was decided that this factor should not be a barrier to eligibility for the stage 2 payment. Furthermore, obesity is linked with progression to liver damage, but this too has been ignored.
Fact: Some people receive help because of their unhealthy lifestyle, while other more health conscious sufferers are excluded, in spite of suffering serious illness through EHMs.