This week journalist Susan Douglas (previously of the Mail on Sunday) finally gets the opportunity to give evidence to the Infected Blood Inquiry and respond to an official complaint made against her back in 1983 by haematologist Dr Peter Jones who worked at the Haemophilia Centre in the Royal Victoria Infirmary, Newcastle and which could have ended her career. The name of Douglas was put forward by this author Carol Grayson and her campaign colleague, Colette Wintle, to the Inquiry as a key witness who should be heard.
The Inquiry chaired by Sir Brian Langstaff, was set up to investigate the infection of haemophiliacs with HIV and hepatitis C during the 1970s and 80s when much of the factor concentrate treatment was imported from the US and came from high-risk sources such as prisoners, prostitutes, skid-row donors and gay men. Plasma pools could be as high as 400,000 donors, treatment manufactured from this cesspit of infection was injected directly into the veins of haemophiliacs to treat an inherited clotting disorder.
Grayson first came across the historic complaint against Douglas over 2 decades ago whilst trawling through old evidence from the 1991 haemophilia HIV litigation files held at a solicitor’s office in Newcastle. In a nutshell, Jones complaint to the Press Council alleging that her report was “sensationalized” and could cause distress to haemophiliac patients. Douglas will no doubt elaborate on the details in her written statement to the Inquiry during questioning by Queen’s Council.
After her husband Peter, a haemophiliac, died in 2005 as a result of receiving US factor concentrates contaminated with HIV and hepatitus viruses, Grayson completed her Masters degree (Distinction) in Gender, Culture and Development at Sunderland University. During this period she wrote a dissertation critiquing the government’s so called “definitive” report on Contaminated Blood titled, Department of Health, Self-Sufficiency in Blood Products in England and Wales: A Chronology from 1973 to 1991.
Ironically, the report had been commissioned by government and written in direct response to a dossier of documents supplied jointly by Grayson and the Newcastle Journal some years earlier as part of their “Bad Blood” campaign launched in 2000 with journalist Louella Houldcroft. Their evidence questioned blood policy decisions in relation to “self -sufficiency” in blood and blood products (or rather the lack of self -sufficiency) and highlighted missing/shredded documents from Lord David Owen’s period as a junior health minister in the 1970s. Grayson managed to obtain copies of papers that were missing or had been shredded by government officials (as highlighted at the Inquiry this week) and was able to demonstrate how damning evidence was missing from the Self Sufficiency report which can be read on the following link.
(Grayson arranged for these documents to be sent to the Deptment of Health, complete with legal letters of return and a 36 page inventory. Many years later in 2018 the report was finally withdrawn as a “whitewash” on the evidence of Grayson as detailed in her original dissertation written during 2005/6)
Turning back to the history of AIDS, concerns over the emergence of a new virus began to appear in the US during 1981 and 1982 as highlighted in the excerpt below from an interview with Dr Don Francis who worked at the Centre for Disease Control during the 1980s. Grayson met Francis during a conference in Washington DC where they both received awards alongside Jay Epstein for their service to haemophiliacs and upholding “truth and justice” in relation to HIV and hepatitis C infection and contaminated blood. Francis was one of the first experts in disease control to warn of the link between blood, AIDS and haemophiliacs.
Dr Don Francis interview question and answer session reflecting on his role at the CDC in the early 1980s and AIDS in haemophiliacs (PBS, Frontline) … “The first cases of AIDS in the hemophiliac population surfaced in the summer of 1982”
… How did HIV get into the [clotting] factor?
The terrible outbreak of HIV in the hemophiliac community, which essentially eliminated an entire generation of hemophiliacs in several parts of the world, but certainly in the United States, was really a very simple situation. That is that clotting factor is obtained from blood or plasma that is donated blood or sold. In the old days, one had to take the liquid part of the blood plasma and extract the Factor VIII from it.
Now, to do that most efficiently and properly, you need a large amount so that it can treat thousands of people. So how do you do that? You take plasma from thousands of people and put it together and then extract the clotting factor, put it in a bottle, and it goes to the homes of hemophiliacs to be injected in them. Well, a better way to transmit an infectious agent than that would be difficult — that is, you take thousands of people, put them into a bottle, and then send that out and inject it into other people with a needle.
What happened was that people really at risk of HIV/AIDS — drug users who wanted to sell even though they were not allowed to sell their plasma, they got in prison populations and were selling their plasma; and the blood industry did not exclude gay men from blood donation — ended up contaminating essentially all [or] lots of Factor VIII material that was used to treat hemophiliacs and infected essentially all of the hemophiliac population with a 100 percent fatal virus that eliminated an entire generation of hemophiliacs. …
… When did it become [clear], certainly to you and your colleagues, that this had happened, and how did the blood banks react?
The first cases of AIDS in the hemophiliac population surfaced in the summer of 1982, and then in the subsequent months there were about five cases that came in transfusion recipients that were announced in January of 1983. This was a time when IV drug users were already transmitting the disease. It was well known that it was in blood on the end of needles shared by IV drug users; it would be logical, therefore, that it would be transmitted through therapeutic blood product used with hemophiliacs or blood transfusions. For us as epidemiologists, this was not a great leap, and we waited until we had a couple of cases, at least or three or four or five cases, before we held big meetings. But then we held big meetings and turned to those responsible for protecting the recipients of those materials to do something about it, and that was another public health disaster.
Turning specifically to the UK media warnings on US plasma in relation to haemophiliacs, an article was published in the Observer in January 1983 written by Christine Doyle documenting similar warnings to Frances which formed part of the historic HIV litigation evidence never shown in court and which Grayson highlighted as follows,
Widow claims contaminated blood warnings were missed (Northern Echo, 14th March 2018)
14th March 2018
UK haematologists held a meeting during the same week in January to discuss the article but failed to act on the warnings by calling for an urgent withdrawal of imported factor concentrate treatment.
Shortly after on February 3rd 1983, the following quote appeared in New Scientist,
“In the last year a task force under Dr Harold Jaffe at the Centre for Disease Control at Atlanta Georgia, has found seven cases of AIDS amongst haemophiliacs who do not fall into any other categories. Jaffe believes that the spread of the disease may be connected with new preparations of factor VII concentrate – the blood clotting agent given to haemophiliacs -which are made up from large numbers of donors, rather than one individual”
Other warnings quickly followed and alarm bells should have been ringing regarding the safety of the UK haemophilia population but haematologists were still in denial, a question was put to Professor Peter Kernoff by the Haemophilia Society as follows,
Could British haemophiliacs get AIDS?
Of course its possible. But I’d still expect AIDs to remain a rare disease. The idea that there’s an epidemic of AIDS amongst haemophiliacs is Ludacris. (1983)
The article by Douglas was published in The Mail On Sunday on the 1st May 1983. The following excerpt from my dissertation written over the period 2005/ 2006 comments on her story and also evidence presented by Dr Spence Galbraith (Public Health Laboratory Service) during the same time period of May 2003.
An early report on the possible risk of haemophiliacs becoming infected with the
AIDS virus via factor VIII appeared in New Scientist (Sattaur, 3rd Feb 1983). The year
1983 was very significant for the haemophilia community in terms of how the news of
AIDS, (a new blood borne virus at that time) was handled by the Government, the
medical profession and the press. I have documented here an incident that appeared in the
Mail On Sunday which does not appear in the SSR yet is an important part of the history
of AIDS in the UK and one that the Government and the medical profession are keen to
forget I question why this important article was omitted when the DOH utilized a later
newspaper article on AIDS in the SSR from the Sun (18th May, 1983). On 1st May 1983
Susan Douglas, a journalist for the Mail On Sunday wrote a well-researched and
controversial article reporting on the dangers of importing “killer” blood from the US
due to the sourcing of plasma from “high-risk” donors and the risk of AIDS for UK
haemophiliacs. Douglas had identified the first two British haemophiliacs with AIDs
which led to a strong reaction from a leading haematologist and a dismissal of her
concerns from the Government. A complaint to the Press Council was filed by Dr Peter
Jones Consultant Haematologist at a Newcastle hospital who claimed the report was
The Government reacted to the article by stating that the evidence presented by
Douglas was “too slight for immediate action.” The Press Counsel went on to censor the
Douglas report as “extravagant” and “alarmist” (Douglas, 1984). This had the effect of
temporarily closing down some news stories on AIDS but haemophiliacs had begun to
question the risks associated with their treatment and once again were met with the
repeated response “not to wority.” The national Haemophilia Society responded on 4th
May 1983 (see Appendix A 13) sending a letter telling members that “the importation of
licensed blood products has always been strictly monitored and controlled” and that “it
would be counter-productive to alter our treatment programmes radically.” Under the FOI
Act the name of the author of this letter has been blocked out. Galbraith (1983) based at
the Public Health Laboratory Service (PHLS) Communicable Diseases Surveillance
Centre was becoming increasingly concerned at his own findings. He wrote a letter on 9th
May to the DHSS in London (see appendix A 14) which documented the first known case
of AIDS in a UK haemophiliac in Cardiff who had been treated with US factor
concentrates. This letter is notably missing from the SSR, Galbraith expressed his concern
over AIDS and infoirmed the DHSS of 11 similar cases in the US. and 3 in Spain and
I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified. (Galbraith, 9th May 1983)
Galbraith attached his reasons for the withdrawal of treatment and urged an early meeting
with haematologists, virologists and others concerned. He also stated, “I am most
surprised that the USA manufacturers of the implicated blood products have not informed
their customers of this new hazard. I assume no official warning has been received in the
UK” (Galbraith, 9th May 1983.) Here it can be argued that once again commercial
interests were prioritized over safety. Galbraith failed to get a positive response to his
concerns. A meeting of Haemophilia Reference Centre Directors dismissed his worries
declaring that there were was insufficient evidence to withdraw US concentrates although
they agreed to review the situation (Bloom and Rizza letter, June 24th 1983, see Appendix
A 15). Galbraith identified that the first known case of AIDS in a U.S. haemophiliac was
in October 1980 although the first recorded case of AIDS in the general US population
was in 1978. He attempted to warn the medical profession that although at that time the
number of cases might be small that did not mean the risk of infection was small. The
national Haemophilia Society funded in part by the American plasma companies
responded to the issue of AIDS on the 18th May 1983, the SSR Chronology states that the
“Haemophilia Society appeal not to ban imported blood products and urge patients not to
stop treatment in response to concerns over potential risks” (SSR, 2006, p. 44).
In the US the plasma companies were slow to react although a meeting between the
Food And Drug Administration (FDA), the Centre For Disease Control (CDC), plasma
companies and other interested bodies met on a number of occasions to discuss the
problem of AIDS. A plasma company letter from Hink (1st June 1983) advised that gay
donors (considered a high-risk population for hepatitis viruses) should voluntarily
exclude themselves from donating plasma (see Appendix A16, Gay Donor Adverts). The
letter also stated “there are no data to support the emotional arguments that prison plasma
collected from adequately screened prisoners is ‘bad”‘ (Hink letter, 1983, see Appendix
A 17). Although the FDA went on to tighten up controls on plasma donors both the U.S.
and the UK continued to use up old stock on haemophilia patients manufactured from
donors known to be high-risk for HIV and hepatitis C and failed to withdraw this
treatment (Glenarthur letter, undated, see Appendix A 18).
On November 25th 1984 Douglas hit back at the UK Government and medical
profession by writing a second article for the Mail On Sunday entitled “AIDs: This
Scandalous Cover-Up.” She noted that there were now 90 cases of AIDS identified in
Britain and 38 people had died from AIDS including one of Dr Jones’s own patients,
Newcastle haemophiliac, Terence McStay. In the same month the American Correctional
Association (1984) produced an information bulletin entitled “Plasmapheresis Centers In
Correctional Institutions” which noted the strong link between intravenous drug-users in
prisons and infection with hepatitis viruses and the AIDS virus. The following statement
appears in the document,
Using “prison” blood is controversial within the plasma industry itself It is also
controversial at the consumer level, especially among the hemophilia population. Medical, ethical, and moral concerns have been voiced publicly; they must be considered in any decision-making process. (American Correctional Association,1984)
End of Excerpt
(In 2009, Grayson was awarded the Economic and Social Research Council, (ESRC) Michael Young Prize for her dissertation challenging the government Self Sufficiency report 2006 and its version of historical events.)
Douglas was right in her concerns yet treated appallingly. She was attacked unfairly by a misogynist who thought he knew better than a journalist. Grayson has for years highlighted this grave injustice calling for the complaint to be overturned and a public apology given to Douglas. Galbraith also deserves an apology from government. He helped Grayson supplying his old papers and permission for them to be used on BBC Newsnight documentary in April 2007 to coincide with the launch of the Archer Inquiry. Grayson already had copies but the original still retained his unredacted handwriting at the top of the page. Galbraith related to this author how he never forgot or forgave how he was ignored and his sense of deep pain and anger that his warnings to withdraw US treatment from the shelves in May 1983 were ignored. Just before his death he approached me wanting help to litigate against a named government official but sadly by this time he was in poor health and it wasn’t to be. One of his final acts was to send Grayson a book dedicated to her that he had written on John Snow and the Broadstreet Pump, the discovery of typhoid in the water supply urging her to continue her investigations into Contaminated Blood. He also invited her to visit him and his family. Sadly he died before the visit could take place but Galbraith will not be forgotten.
The Haemophilia Society today is a far cry from its predecessors and has since published a written apology formulated with the help of Grayson and Wintle for its past catastrophic failings. The organisation today is working hard to support victims at every step and ensure an accurate and honest account and timeline of Contaminated Blood history is recorded so lessons can be learnt.
Grayson discovered other examples of Jones attacking the media over Contaminated Blood within the HIV litigation which she has submitted to the Inquiry. She also learnt that Jones allegedly had a hand in ensuring her voice was not included in a BBC Reunion radio programme (11th Sept, 2016) on which he appeared but she was cancelled at short notice. Colette Wintle who did appear on the programme was subjected to editing out of parts that attracted his disaproval.
In a final twist to the story, Grayson came across reference to a letter authored by Jones and others whilst she was reviewing thousands of documents to be submitted to the Infected Blood Inquiry. It appeared in the Statement of Claim, part of the HIV litigation in 1991, evidence presented by the lawyers for haemophilia claimants. The letter was published in the Lancet and dated 15th January 1983 and contained the following passage,
Peter Jones et al reported that 11 out of 16 patients all of whom had been exposed to United States Commercial Concentrates, had altered T cell subsets, similar to AIDS and that a New York study was similar.
So in essence Jones was worried enough about haemophiliacs and AIDS to go on record with his findings to the Lancet in January 1983 yet fought to close down Douglas for being “sensationalist” in May of that same year. This was the height of hypocrisy when just 4 months later the evidence had significantly strengthened linking imported factor concentrate plasma treatment with the first cases of AIDS found by Douglas in UK haemophiliacs.
On the 6th May 1983, the Communicable Disease Surveillance Centre (CDSC) reported the following under the title AIDS : American Factor VIII
The male patient (age 23 years in Cardiff) who is a known haemophiliac now appears to have the right signs and symptoms for a diagnosis with AIDS. (He has an opportunistic infection – oesophageal candidiasis – and also – epididymoarchitis of unknown aetiology.) He has been ill for a month and has been treated with American F VIII. We have no further news of the haemophilia patient in London (as mentioned in the press (on Sunday 1st May 1983).
Douglas should be belatedly applauded for her stirling work and investigative journalism. Also to be thanked is her main anonymous source for the article whom she refers to as “haematologist zero Cardiff” who cared enough to gave an honest account of the danger to haemophiliacs whilst Jones descended into anger and denial lashing out at the unfortunate messenger!
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”