Blog: Carol Grayson - A Long Overdue Apology For Haemophiliacs (Part 1)
This week President Obama has personally apologised “for all those affected” in a US-led study in the 1940s that infected hundreds of prisoners, soldiers and mental patients in Guatemala with sexually transmitted diseases through injections...
Deep regret and outrage was expressed over the “reprehensible research” in which hundreds of people were infected with gonorrhoea or syphilis and then allowed them to have unprotected sex. This announcement has left haemophiliacs suffering from a bleeding disorder, stunned and angry as to why to date there has been no such official apology from either the US or the UK governments for reprehensible research in which 4,700 UK haemophilia patients were injected and infected with HIV and hepatitis viruses B and C through treatment trials with factor concentrates in the 1970s and 1980s. 
Many were then allowed to have unprotected sex while positive test results were withheld from them, some going on to infect their partners (see BBC 2 Newsnight film on contaminated blood).
'... There has been no such official apology from either the US or the UK governments for reprehensible research in which 4,700 UK haemophilia patients were knowingly injected and infected with HIV and hepatitis viruses B and C through treatment trials with factor concentrates in the 1970s and 1980s'
What is equally causing outrage for many is that this apology for the Guatemalan syphilis research is supported by Hilary Clinton. Yet there is no mention of the multitude of haemophiliacs worldwide that were given factor concentrates manufactured from the blood of prisoners known to be infected with hepatitis and later HIV as plasma company documents showed in places such as Arkansas State Penitentiary. Note: former President Bill Clinton helped reopen the prison plasma programme (whilst Governor of Arkansas) that was closed down on the grounds of safety.
Blood is a highly valuable global commodity which was bought up by US pharmaceutical companies making millions for multi-national corporations. The World Health Organisation advised back in 1975 that all countries should aim for being self-sufficient in supplying their own blood products and only use volunteer donors as crossing borders could introduce new infections and paid donors were seen to be less altruistic and more likely to lie about their health status.
Clinton has apologised for the Tuskegee experiment in which black men that were infected with syphilis were studied but not treated... but seems unwilling to address the contaminated blood catastrophe in his own back yard whilst he was Governor of Arkansas. The Arkansas Department of Corrections is also experiencing a collective memory loss as there is no mention of the prison plasma programme on its prison history website. The impact of the plasma programme on inmates and haemophiliacs has practically been annhilated from prison history...
In a letter to my husband’s QC for an earlier legal case, documentary film maker Kelly Duda (Factor 8: The Arkansas Prison Blood Scandal) wrote, “The prison system remained unconstitutional in May 1980, when for three days, Peter Longstaff (my husband) infused several vials of Koate, the brand name of Cutter’s factor concentrate, to stop a bleeding episode. He had no idea when he took his medicine from Lot number NC 8186 that it was made with the plasma of 297 inmates from Arkansas and an undetermined number of convicts from Avon Park, Florida.”
In Duda’s letter, Bill Douglas, a former Arkansas inmate infected with hepatitis C and who sold his plasma at the same time Peter received the NC 8196 batch number stated, “They didn’t care. If you could crawl to get there you were able to give blood.”
Haemophiliacs have long been described as the “canaries in the coalmine” due to the fact that they were in the frontline of being exposed to blood borne viruses because of their treatment with plasma products. Whatever haemophiliacs become infected with would most certainly hit the wider population soon after, they were therefore seen as a valuable group to monitor. As soon as the first large pool plasma was introduced in the US in the late 1960s (factor concentrates, manufactured from the plasma of thousands of paid donors as opposed to volunteers) doctors started writing about the greatly increased risk of hepatitis in medical journals. Infections were recorded immediately in US haemophilia patients, but the medical profession refused to stop using this unethical treatment. (Prior to this UK haemophiliacs were treated with cryoprecipitate; made from single figure donations from unpaid donors).
"They didn't care. If you were able to crawl there you were able to give blood"
The first US imported treatment hit the UK in 1973 along with a series of hepatitis outbreaks in haemophiliacs around the country. Minutes of meetings have shown that some haematologists were on the payroll of the US plasma companies so it was in their personal financial interest to get as many patients taking the factor concentrates as possible putting profit before safety. Let’s look at some known facts and unethical practises which took place.
1) The use of pooled plasma was sanctioned by both the US and the UK for use as treatment BEFORE processes were developed to eliminate hepatitis thus exposing patients to a huge risk of infection often without their knowledge or “informed” consent.
2) There were very clear warnings of the dangers of using prison blood from the 1960s onwards in medical journals... “the most practical method of reducing the hazard of serum hepatitis from blood is to stop using blood from prison and skid-row donors” J. Garrott Allen, M.D. Annals of Surgery, 1966. He wrote directly in January 1975 to the head of the Blood Products Laboratory UK warning Britain NOT to import US prison blood as blood from paid prisoners and skid row was “extraordinarily hazardous” because of the high hepatitis risk.
3) A Centre for Disease Control internal document a year earlier ( February 1974) which appears in my research refers to the fact that “intra-venous drug abuse including the sharing of equipment was commonly practised by plasma donors.”
4) US prisoners were a group also subjected to unethical experimentation (including viral experiments often against the Nuremberg code and therefore not suitable for use as plasma donors); in other words whatever viruses inmates were exposed to could be transmitted to the recipients of their plasma.
In my follow up article (Part 2) I will look at evidence presented from the sister of a US prison plasma donor and why the UK government must now address the issue of providing a public apology for past unethical research on the haemophilia community. As Hilary Clinton has so clearly stated with regard to the Guatemalan experiment, “We deeply regret that it happened, and we apologise to all the individuals who were affected by such abhorrent research practises.”
Haemophilia patients too need to hear these words.
Read here for Part 2 of this report...
Words: Carol Grayson. Carol is a haemophilia widow and was awarded the Michael Young Research Prize for her work on the impact of the global blood trade on UK haemophiliacs.
Photo: Flickr user swishresearchassistant,
Disclaimer: This is an article written by Carol Grayson and is not necessarily reflective of Christian Aid or Ctrl.Alt.Shift views.
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