Contaminated blood campaigners have renewed calls for the Department of Health (DoH) to play no part in a new inquiry into the scandal - amid fresh evidence of secret HIV testing carried out on haemophiliacs at a Camden hospital in the 1980s.
Victims of the horrific blood scandal have said DoH overseeing the inquiry is akin to an “alleged criminal conducting their own trial and choosing their own judge” - due to the department’s own involvement in the treatment disaster.
It comes amid revelations that the government was complicit in secret HIV testing of haemophiliacs at the labs of Middlesex Hospital in 1984 and 1985 without the consent or knowledge of some patients.
Jason Evans, founder of Factor 8 Campaign UK, who unearthed the evidence, said: “A lot of people who know they never gave consent to be tested still want the answer as to who ordered the testing, and I think the picture’s now becoming clearer.
“I think it’s extremely significant, because it shows an action by the DoH that directly relates to a possible breach of people’s rights.
“That will only strengthen the view that the DoH should not be involved with the inquiry.”
From 1983 onwards haemophiliacs in the US were falling ill with a deadly new virus, then known as HTLV-III, and doctors in the UK were racing to develop a test.
Haemophilia patients were at high risk of infection as they had been unwittingly treated with blood factor products to stop painful bleeding, which were later shown to be riddled with HIV.
In the summer of 1984 the HIV virus was isolated, and by August a UK test was available in the laboratories of Prof Richard Tedder at Middlesex Hospital Medical School in Camden, which later became part of University College London (UCL).
UCL has confirmed that in 1984 and 1985 Prof Tedder held a contract for testing blood samples for HIV, in collaboration with the Haemophilia Society, and carried out research aimed at defining which HIV infections had resulted from exposure to contaminated blood products.
UCL said the tests were done with the knowledge of haemophilia centre directors, who had the responsibility for managing patients and securing consent.
While it is unclear who ordered this testing, a statement from UCL this week said: “We don’t know if the DoH were aware of this programme, and there was no contract with Public Health Laboratory Service, but Prof Tedder thinks it is likely that DoH were aware given the close collaboration with the Haemophilia Society.”
The Ham&High has also seen copies of memos submitted to the former Archer and Penrose inquiries into the blood scandal that shows senior DoH officials were aware of the testing programme from July 1984 onwards.
Other Archer Inquiry documents prove some tests were carried out without consent.
Dr Mark Winter, a haemophilia centre director, said in a statement to the inquiry in 2007 that doctors took their own decisions in the absence of standardised advice.
“In our centre, we informed patients that a blood test was now available and that their blood was being sent to UCH for testing,” he said. “In some other centres, they saw the availability of the new test as merely an extension of their pre-existing screening programme and did not perceive the need to inform patients.”
Leading haematologist Dr Edward Tuddenham, who worked at the Royal Free Hospital in the 1980s, this week told the Ham&High medical ethics at the time were very different.
“Today we would think it was unethical to do that,” he said. “But the problem is doing retro ethics to another time. Today it wouldn’t be regarded as ethical. Back then I suspect some doctors would have just gone ahead and taken samples and sent them off.”
Concern over the HIV testing comes as contaminated blood campaign groups today meet with former Hillsborough panel chair, the Right Rev James Jones, to reiterate calls for the DoH to play no part in the new contaminated blood inquiry.
The ex-bishop has been asked to break the stalemate over how to move forward with the new inquiry ordered by prime minister Theresa May earlier this year.
The DoH said it was taking the accusations regarding HIV testing “very seriously”.
A spokeswoman told the Ham&High: “The contaminated blood scandal of the 1970s and ‘80s is an appalling tragedy which should simply never have happened. This is why the government has committed to a full inquiry.
“Concerns like the above should be raised by the campaigners as part of the inquiry. No decision has yet been taken on the sponsorship of the inquiry. The government is consulting on the format, scope and sponsorship of the inquiry until October 18.”
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What are the documents that show government knew about testing?
Letters and memos sent to or written by Department of Health officials prove the government knew HIV testing was being carried out on the blood of haemophiliacs in 1984 and 1985.
The documents were all found in the archives of the former Archer or Penrose inquiries into the contaminated blood scandal and were dug up by campaigner Jason Evans, whose own father died from Aids contracted from infected blood factor products.
The 1984 letter:
In the summer of 1984, as intense work was underway to develop a test for HIV, a letter was sent from the director of the National Blood Transfusion Service to a senior Department of Health and Social Security (DHSS) official, Dr Alison Smithies. The letter of July 3, 1984 reveals: “Studies will be performed upon patients in high risk groups with respect to Aids.” This would have included haemophiliacs.
Memo of January 11, 1985:
A briefing memo by Dr Smithies prepared for government ministers says the Middlesex Hospital HIV test was “currently being used” to detect Aids, or the Aids related complex, amongst haemophiliacs.
Meeting minutes October 1, 1985:
At the government’s Expert Advisory Group on Aids, the results of a “prevalence study of haemophiliacs who had the HTLV-III test”, as HIV was then known, were reported. The minutes show of the 2,420 haemophiliacs tested, some 865 were HIV positive at the time. All had been treated with blood factor products.
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