This week has been one of mixed emotions for haemophiliacs given contaminated blood and their affected partners that have fought long and hard over decades for both a public inquiry and proper compensation for all.
Haemophiliacs were born with an inherited bleeding disorder. They became infected with hepatitis C and HIV (in addition to hepatitis B) during the 1970s and 80s through factor concentrate treatment given to help their blood clot. It was often imported from the US and sourced from “high -risk donors” such as prisoners, sex workers and drug addicts.
The Infected Blood Inquiry (tragically, years too late for many) was set up by government in 2018 to investigate and examine the circumstances surrounding infection and is chaired by Sir Brian Langstaff.
On the issue of compensation, after inviting submissions from interested parties, and reading the report of Sir Robert Francis (brought in by government to write up a Compensation Framework Study), Langstaff accepted the recommendation of Francis regarding the need for interim payments to be considered now to alleviate suffering and further suffering. Langstaff then took the key step of recommending that an interim compensation payment of no less than £100,000 should be paid to all the infected people and all the bereaved partners currently registered on the (government) financial schemes and those who register now and before the inception of any future schemes. Watch Sir Brian speak about this on the link below,
The government have now accepted this initial recommendation of Sir Brian Langstaff in full, releasing a press statement on the 17th August 2022 as follows,
Infected Blood victims to receive £100,000 interim compensation payment
(The interim compensation payments will also be made to persons infected via whole blood transfusion though this is an entirely separate case to haemophiliacs.)
For those in the haemophilia community who will receive this interim compensation payment by the end of October, the infected, and affected bereaved partners, there is a sense of relief and gratitude to “Sir Brian” coupled with deep sadness as those left alive struggle with ongoing ill health and partners continue to mourn their loved ones.
In addition, there are those who have yet to receive any interim payment including parents who lost children and children who lost parents who have expressed their pain and disappointment through the media. The Chair has highlighted that work is very much ongoing and urged patience, stating, “this is not the end of the Inquiry’s work and the question of compensation and its scope is not resolved in this short report on interim payments, I repeat, the interim report concerns only whether I should recommend interim payments.” Langstaff’s final report is expected to be published in 2023 with full and final recommendations.
One ray of hope has emerged on social media however for those haemophiliacs where it may be more difficult to seek a claim for compensation as they have naturally cleared the hepatitis C virus and are known as “natural clearers”. Professor Michael Makris, a professor of haemostasis and thrombosis at the University of Sheffield, took to Twitter to highlight his 5 important points for supporting the inclusion of these natural clearers for compensation payments as follows:-
I hope the Infected Blood Inquiry ( @bloodinquiry) will not forget the 15% of persons with #haemophilia that were infected with hepatitis C and who cleared the virus spontaneously. #hemophilia 1/5
Persons infected with hepatitis at a young age were more likely to clear the virus spontaneously. To qualify for compensation you need to show chonic infection ie for more than 6 months. This can only be done by submitting an application with abnormal liver function tests. 2/5
Abnormal liver function tests (ALT or AST) are blood tests. Doctors did not do many of these pre-1991 and even in cases where they are done, the medical notes have been destroyed or are missing. 3/5
Many persons with #haemophilia who cleared the virus spontaneously and who can not get compensation (according to the current system) have suffered significantly psychologically as a result of knowing they have been infected with hepatitis. 4/5
The @bloodinquiry also needs to address the issue of this sizeable group of individuals. These patients may not have high visibility at the IBI, but the impact of hepatitis on their lives is very real. 5/5
In addition to the points made by Prof Makris, haemophiliacs that are natural clearers may have been infected with multiple hepatitis viruses such as B, D, G and some could have been re-infected with hepatitis viruses and infected with HIV. Early drug treatment regimes for HIV may have also added additional stress to the liver. Even where haemophiliacs have cleared hepatitis C there may still be residual damage and weakness of this organ due to these multiple factors which affect haemophiliacs.
As a former nursing sister in psychiatry that nursed many patients with hepatitis viruses and HIV/AIDS, Grayson states that the long term psychological damage of having being infected and the distressing way haemophiliacs learnt of their infection(s) cannot be underestimated. Haemophilia runs in families so there is also the worry of watching other infected siblings struggle with hepatitis C which may make it more difficult to accept that a natural clearer has actually cleared the virus, the fears may remain long after the virus has gone. It is one thing to be told this, another to actually believe it.
Sir Brian Langstaff has demonstrated that he is a person who genuinely listens to all concerned and shows carefully measured thought and much needed empathy so there is optimism that he will consider further additional points made to him. When the Inquiry does conclude and if there are to be individual assessments of those infected and affected then these points made by Professor Makris should be examined as they make a compelling arguement for including natural clearers in future compensation schemes and then determine at what level they should be compensated.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”