‘Used As HIV Guinea Pigs But No-One Even Told Us We Had Been Infected’
Patients of a leading haemophilia consultant were used for early research into HIV and AIDS without being told they had the condition, it was claimed yesterday.
The UK’s first independent inquiry into how blood product contaminated with HIV and hepatitis was given to haemophiliacs heard patients had been used for years in a study without knowing about the research or that they even had HIV.
Robert Mackie, a haemophiliac, said he contracted HIV in 1984 but was not told of his condition by his consultant, Professor Christopher Ludlam, until 1987.
The 57-year-old said he and others had been used as part of an experiment and exposed to a virulent strain of HIV.
He accused the consultants involved of “murder” in an emotional evidence session before Lord Archer of Sandwell.
He said: “In the Spring of 1983 they took the decision not to inform them of their HIV status, but to keep an eye on their wives and spouses to see if they became infected. I find that murder of the first degree.
“I believe non-consensual research was conducted by doctors of haemophilia in this country. We were all used as lab rats. There is no other way I can put it – we were all just guinea pigs,” he said.
In evidence, some of which was read by his wife, Alice, when he became too weak, Mr Mackie said 16 haemophiliacs had become infected from one batch of blood and Prof Ludlam failed to inform patients of the risk. “Two uncles, one cousin and many haemophiliac friends have all died from AIDS from this one infected batch at a time when their infection could have and should have been avoided,” he said.
Now his wife had to watch him suffer the same fate, he said.
Mr Mackie said a series of articles for medical journals and research papers showed how Prof Ludlam, professor of haematology and coagulation medicine, had used the Edinburgh group for research into AIDS, which was only beginning to come into the public spotlight in the early 1980s.
He and other patients were part of a study from March 1983, but he claimed they were tested for up to 15 years before being informed. Citing research papers, he said it was “totally outrageous” a doctor could carry out non-consensual research on patients and not be held to account. He went on: “His research also showed that his Edinburgh haemophilia cohort were infected with an unusually virulent strain of HIV – perhaps this is also a reason why we were kept in the dark about the events which were taking place at the Royal Infirmary of Edinburgh from March 1983.”
He said an exchange between his consultant and an American doctor “appears to suggest my consultant was fully aware of the value to scientific endeavour of his Edinburgh patients and that I, along with others, were of value to him”.
The patients had been given a batch of infected Factor VIII blood product. He had continually asked if there were any risks from Factor VIII but was told there was nothing to worry about. In 1987, he was told he had been infected with HIV for nearly four years, a delay that he said “put my young wife, family and friends at risk”.
“We have since discovered that my consultant was indeed aware of the risk to haemophiliacs from AIDS from early 1983 and had he informed me of the risks, my infection would have been avoided as I would have refused any kind of blood or blood product treatment.”
Mr Mackie said a letter from Prof Ludlam showed he appeared to be “offering up” him and other Royal Infirmary patients as a candidate group for research.
Dr Robert Gordon, of the National Institute of Health, had put out an appeal in the Lancet medical journal in 1983, calling for “similarly treated haemophiliacs in a geographical area to which AIDS has not yet been introduced”.
It went on: “The resolution of this question by a timely investigation in some country where cases of AIDS have not yet been reported would be an immense help to public health workers worldwide.”
In a medical newsletter in 1990, Prof Ludlam described a unique group of patients in Scotland that had formed the basis of several years of important research he had published on AIDS.
Prof Ludlam could not be reached for comment last night. NHS Lothian said it did not want to comment. Bruce Norval, from Fortrose, who was diagnosed with hepatitis C in 1990, also gave evidence.
He told The Scotsman: “I have campaigned on this issue for years and I now just want a final response so I can get on with what is left of my life.”
Inquiry 20 years after 4,500 given contaminated blood
ABOUT 4,500 haemophilia patients were thought to be infected with contaminated blood 20 years ago.
So far, almost 2,000 haemophiliacs exposed to fatal viruses in contaminated blood or blood products have died and many more are terminally ill.
After years of campaigning, the victims and their relatives have been given the chance to hold an independent inquiry.
The hearings began last month amid claims on the BBC’s Newsnight programme that Britain’s doctors ignored warnings about using haemophiliacs for testing new blood products.
Successive UK governments have refused to conduct a public inquiry in to the events.
The privately funded inquiry is being chaired by Lord Archer of Sandwell, a former solicitor-general, and has heavyweight backing.
The Haemophilia Society is now calling for the government to make available to the inquiry documents that cover HIV infection since 1985.
Haemophilia is a disorder, usually inherited, in which the blood does not clot properly due to low levels of clotting factors. People with the condition bruise easily and can have spontaneous internal bleeding.
In the 1970s, a new method of producing clotting factors was discovered, for which plasma donations from thousands of donors were pulled together. If any of the sources had a blood-borne virus, the whole batch would be contaminated.
Some blood products during this time came from American suppliers who paid what were revealed as prisoners or “skid row” donors for their blood – people more likely to be infected with HIV and hepatitis C, according to the Haemophilia Society.