Arkansas Prison blood donor dying of hepatitis C: UK treatment for haemophiliacs was sourced from Arkansas, prisoners with deadly viruses HIV and hepatitis C were allowed to sell their blood for the global market
(Image sent to me via sister of prisoner donor above )
I welcome the news that the Cabinet Office is to lead the Public Inquiry on Contaminated Blood instead of the Department of Health. It would have been highly inappropriate for the DOH to investigate itself given the many allegations regarding behaviour and safety violations over the years. Now it is important to move forward and appoint a suitable Chairperson and panel.
Haemophilia Action UK is concerned that haemophilia cases, where persons became contaminated with HIV and hepatitis viruses via a product called Factor Concentrates (often imported from the US) will be buried under whole blood cases where persons were infected from blood sourced within the UK. It is essential that the two cases which were always viewed as entirely separate legal cases continue to be viewed independently of each other within the Public Inquiry. It would be like comparing chalk with cheese and the safety violations and human rights abuses are also different in nature due to haemophiliacs receiving blood from skid-row, US prisons and from plasma wagons outside bath houses which specifically targeted gay men as plasma donors considered high risk for HIV and hepatitis during the 1970s and 1980s.
The national Haemophilia Society that represents many haemophiliacs will likely be called to give evidence however they can only legally represent those with inherited bleeding disorders such as haemophilia whereas the Hepatitis C Trust represents whole blood cases that could have received a transfusion following a car accident for example. In order for the Inquiry team to investigate properly, they would need to set up separate panels each within their own speciality.
I support both haemophilia and whole blood cases being investigated and the need for justice for both but this must be done separately within the Inquiry so as not to confuse the issues.
The Cabinet Office perhaps need to be reminded that Virginia Bottomley (Conservatives) designated haemophiliacs with HIV a Special Status category many years ago which was then applied to litigation ex-gratia payments in 1991. This was in recognition that haemophiliacs had a hereditary condition which ran in families and were disadvantaged from birth. Therefore multiple family members with bleeding disorders within the same family could be infected with HIV, hepatitis B and C and then later exposed to variant CJD which had an enormous impact on families. This was the case with my own family where 2 brothers were infected with multiple viruses, my late husband with HIV, hepatitis B and C and exposed to v CJD and my brother in law infected with HIV and hepatitis viruses who died of AIDs, both men through factor concentrate treatment.
I have argued for many years that the Special Status category should also have been applied to haemophiliacs with hepatitis C that should now be included within this category.
To quote several of Bottomley’s numerous references in Hansard between 1989 and 1991 on the Special Case, she states,
“The ex-gratia payments given to provide help for haemophiliacs with HIV and their families recognised their wholly exceptional circumstances. Haemophiliacs were already suffering from a disability which affected their employment prospects, insurance and mortgage status. Also the hereditary nature of haemophilia means that more than one member of the family may be infected with HIV.”
“We do not believe that any useful purpose would be served by such a survey of the financial circumstances after infection of any particular group with HIV. Our ex-gratia payments to haemophiliacs recognise their wholly exceptional circumstances whereby they were doubly disadvantaged by their pre-existing haemophilia as well as the HIV infection. We have no plans to extend these special arrangements to other groups”
“There is hardly any need for me to remind the House of the lengthy campaign on behalf of haemophiliacs—supported by many right hon. and hon. Members, the public and the media—whose advocates reiterated that haemophiliacs were an exceptional and specific group who merited exceptional treatment. The Government remain convinced that their case is exceptional.”
“In reaching the decision a year ago that the haemophiliacs in question should be offered financial assistance because they were a special and specific group”
“We have no evidence to suggest that those people who have become infected with HIV via blood transfusion were similarly disadvantaged before the illness or accident leading to the need for transfusion.”
Virginia Bottomley also noted that often more than one member of the family was infected through factor concentrates. The following shows some early findings,
“Among the haemophiliacs infected with HIV, we understand that there are 65 pairs and six trios of brothers who are infected. We believe there may be a significant number of other cases where HIV-infected haemophiliacs are related, for example, grandfathers, grandsons, uncles and nephews, but these cannot be readily identified from the available information. In addition, there are a number of cases where the haemophiliac’s spouse or partner has become infected.”
(This was an important factor but was somewhat gender biased as it failed to mention females with bleeding disorders that had infected sisters that would also have increased the figures)
The government has always refused to pay compensation unlike the government of Eire that paid compensations to haemophiliacs and their families on the grounds of “extraordinary suffering” paying out on “loss and need”. A private Inquiry held by the respected former attorney general Lord Archer of Sandwell (now deceased) gave the same recommendations here which were welcomed by the haemophilia community but so much misinformation was spread by government on the Eire settlement that this was not carried out. This was despite a haemophiliac Andrew March winning a Judicial Review in 2010 with key documents obtained from Irish lawyers, Eire government and Irish haemophilia Society in 2004 by Carol Grayson and Colette Wintle.
The current government still refuses to change their stance and have continued to rely on a false narrative regarding Eire thus denying justice and financial compensation to UK victims.
Carol Grayson (Haemophilia Action UK) 3rd November 2017
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Carol Anne Grayson is an independent writer/researcher on global health/human rights and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She is 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”.