Blog: Carol Grayson - A Long Overdue Apology For Haemophiliacs (Part 2)

In Part One [1] of her report, Carol Grayson looked at a little of the background for haemophiliacs with a bleeding disorder being given unethical “treatment” and used as 'guinea pigs' for a plasma treatment named factor concentrates which were introduced in the late 1960s in the US. Now she delves into 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...

These products were “sold” to haemophilics as a miracle cure. Factor concentrates were manufactured  from the plasma of thousands of donors often those in prison or homeless on “skid –row” and put on the market BEFORE a process was developed to eliminate hepatitis thus exposing them to a very high risk of infection. Prior to that UK haemophiliacs were given cryoprecipitate from single donors in a volunteer system based altruism. Paid plasma donors were seen to be a much higher risk for carrying viruses and more likely to lie over their health status in order to get paid for their blood.

Most haemophiliacs were unaware of the source of their treatment. In my husband’s case (pictured right) he returned his treatment refusing to take it as far back as 1975 after he watched a World In Action documentary tracing treatment given to UK haemophiliacs back to skid-row clinics where drug addicts and alcoholics lined up to sell their life blood. However his doctor lied to him stating that his treatment no longer came from such sources. In fact this practice continued for many years after infecting and killing those on the receiving end of the treatment. Here I present some of the allegations and evidence presented in documentaries and later to governments when haemophiliacs began to litigate against the multi-national plasma companies that infected them.

"... I knew and I vowed to my brother that I would see the atrocity exposed and those responsible for it brought to justice”

Linda Tant Miller, the sister of a US prison plasma donor Bud Tant who later died from hepatitis C wrote a letter to Tony Blair dated March 22, 2001. I presented this at the door of Number 10 and a decade later I am still awaiting a reply. Linda states “the purpose of this letter is to provide you with some of the information to which I am privy regarding the collection of HIV and hepatitis-tainted human blood plasma from the Cummins Unit of the Arkansas Department of Corrections (ADC) and its distribution around the world”... and goes on to say,  “As I watched my brother die a death more gruesome and agonising than I’d ever dreamed in my worst nightmares, I realised that millions of people all over the world would suffer his same horrendous fate and their families would stand helplessly by, suffering the same grief and agony we were enduring. I realised that most of them would never know the source of their infection, but I knew and I vowed to my brother that I would see the atrocity exposed and those responsible for it brought to justice.”

She goes on to explain “here are just a few of the facts I uncovered” and details a number of very serious allegations which also appeared as evidence in past legal cases in the US:

- Known homosexual prison prostitutes, even those in the final stages of AIDS were routinely permitted to donate plasma.
- Men who were bloated and jaundiced from the final stage of hepatitis were routinely permitted to donate plasma.
- Even when available, tests for HIV and hepatitis were seldom utilised, and when they were, results were often falsified.
- Needles were sharpened with sand paper and collection tubing was re-used from inmate to inmate, thereby cross- infecting virtually the entire donor base.
- The collected plasma was stored in a freezer that was often out of order. Plasma rendered unfit by thawing was refrozen and shipped out in regular shipments.
- Plasma that was rejected by the plasma brokers as unfit was returned to the Cummins Unit for destruction. Out of each returned case of plasma, one of two units were destroyed and the rest was refrozen and re-shipped.
- During periods of time when the US food and Drug Administration had shut down the Cummins Unit Programme due to their unsafe practices, the Arkansas Department of Corrections administrators continued to collect and sell plasma, using names collected from the local telephone book and selling it through a community plasma center.

Unethical experimentation did not stop with the US, British haematologists also recognised the value of haemophiliacs as guinea pigs. As my past research showed doctors collected evidence of suspect treatment batch numbers for hepatitis but failed to tell their patients they were being exposed.

Dr Charles Rizza stated, “we recognised in the 70s and early 80s that all of the concentrates were infected with non-A, non-B hepatitis”  (later called hepatitis C) and  “factor VIII is still very impure it could be called a crude protein concentrate contaminated with Factor VIII” (Jad Adams, AIDS, The HIV Myth [2])

A letter to all Haemophilia Centre Directors (January 11, 1982) states the following: “Although initial production batches may have been tested for infectivity by injecting them into chimpanzees it is unlikely that manufacturers will be able to guarantee this form of quality control for all future batches. It is therefore very important to find out by studies in human beings to what extent the infectivity of the various concentrates has been reduced. The most clear way of doing this is by administering those concentrates to patients requiring treatment who have not been previously exposed to large pool plasma.

These patients are few and far in number but a study along those lines is being carried out at Oxford to determine the infectivity of Factor VIII concentrates produced by the Plasma Fractionation Laboratory, Oxford and Blood Products Laboratory, Elstree. This study shows that it is possible to demonstrate infectivity using quite small numbers of previously untreated patients.”

In 1983 warnings by Dr Galbraith, Public Health Laboratory Service UK to withdraw US plasma were again ignored despite clear evidence that the HIV virus was in the blood and US factor concentrate treatment had already infected haemophiliacs in the US and in Spain where treatment was imported from America. The government official that ignored this warning has apologised to me in a phone call stating he made a terrible mistake not to withdraw the US treatment and that “treatment was not so ethical back then” but to date there has been no official public apology from the British or US governments and this is long overdue.

On the October 14, 2010 there will be an historic three-hour back bench debate in the Commons on haemophiliacs and contaminated blood [3]. In a previous meeting with Anne Milton (Parliamentary Under Secretary of State for Health) attended by fellow haemophilia campaigner Colette Wintle and it was stated that David Cameron wanted the haemophilia situation “sorted by Christmas” [4]. Lord Archer of Sandwell has written very clear recommendations in his report [5] as to how this can be implemented...

Lord Morris of Manchester has in addition presented a Contaminated Blood Bill [6]in an attempt to put into legislation the recommendations of Lord Archer. Haemophiliacs have waited long enough and hope that the government will fully implement these recommendations awarding meaningful compensation to acknowledge multiple losses alongside improved guidelines for care and treatment. However what is also essential is a recognition of the unethical treatment and experimentation of the past in order that such mistakes are never made again.

With reference to the syphilis experiment [7] Guatemalan president Alvaro Colom stated: “What happened all those years ago is a crime against humanity and the government reserves the right to lodge a formal legal complaint over it.” Virtually the same words were spoken to former Health Minister Yvette Cooper by myself in a meeting at Westminster regarding American prison plasma several years ago. She made a commitment that if we could prove that haemophiliacs had received prison blood and had the batch numbers, the UK government would investigate. The evidence has been sent to the government on numerous occasions asking them to contact the relevant US authorities but we are still waiting for action on this matter. In my opinion, it is only with a full and formal apology that some closure may be achieved. Over 2,000 of the 4,700 infected haemophiliacs have died to date and they continue to die at around one a month.

Finally Arthur Caplain, director of the Centre for Bioethics at the University of Pennsylvania, spoke these words on the Guatemalan experiment which could just as easily be applied to haemophilia experimentation: “The horrific study is a reminder that we need to remain vigilant about the ethics of doing research using subjects who may be so desperate for any type of medical attention or who may not fully understand what they are being asked to do. Some of the best researchers in America were involved with Tuskegee and the Guatemalan syphilis studies [8]. That was no guarantee that what they did was ethical - nor is it now.”

Words: Carol Grayson. Carol is a widow and was awarded the Michael Young Research Prize [9] for her work on the impact of the global blood trade on UK haemophiliacs.
Photo: Courtesy of the Newcastle Journal

To read Part 1 of this report, please click here [1].

Disclaimer: This is an article written by Carol Grayson and is not necessarily reflective of Christian Aid or Ctrl.Alt.Shift views.