Some haemophiliac patients did not find out whether they were HIV positive until more than two years after receiving infected transfusions, an inquiry has heard.
The Infected Blood Inquiry was told two patients who were informed they may have been infected did not request tests to find out, while others were “adamant” they did not want to know.
Giving evidence to the UK-wide inquiry remotely on Thursday, Professor Christopher Ludlam, consultant haematologist and reference centre director at the Royal Infirmary of Edinburgh from 1980 to 2011, said he knew of 16 positive cases in October 1984.
The inquiry has been told 23 haemophiliac patients in total, two of them children, became infected with HIV after treatment at the Edinburgh Centre in 1984.
Prof Ludlam said he thinks one of the 23 patients was treated elsewhere.
Patients were invited to a group meeting in December that year when they were told about the situation and were offered tests to find out whether they had antibodies to HTLV-III, the previous name for HIV.
Jenni Richards QC asked Prof Ludlam: “There were two patients who after two years still didn’t know their results because they had not responded to any invitation to proactively contact the centre and a very small number of patients declined to know the result?”
He replied that was correct and said the two people who had not asked for their results found out at the end of January 1986, or very early in January 1987.
Asked when others may have found out, he said: “I cannot remember when they eventually heard.”
He said one patient who did not want to know their test results did not attend the December meeting, and Prof Ludlam made a point of contacting him.
The professor told the inquiry: “It was of particular concern to me because I saw that there was a possibility that other people could be at risk and I would have felt more comfortable if he had known.
“I suspect he must have thought he might be.”
Thousands of patients across the UK were infected with HIV and hepatitis C through contaminated blood products in the 1970s and 1980s.
About 2,400 people died in what has been labelled the worst treatment disaster in the history of the NHS.
Profe Ludlam was also asked about the situation when he was considering the safety of Scottish blood products in the early 80s, and what consideration he gave to the intravenous drug problem in the area where he was practicing.
He said: “I don’t think that factored very highly. It certainly was not known that there there was HIV in the Edinburgh drug users, that didn’t become known till I think quite late in 1985 and was a bit of a shock.”
Prof Ludlam was asked about minutes from meetings in the early 1980s of the reference centre directors, a group of physicians which considered topics for improving haemophilia care in the UK.
Two HIV+ patients diagnosed in Nov 1984 were not told their results until more than 2 years later. Prof Ludlam said they had not come forward for the results and he had eventually contacted them. Another patient "positively declined" to know the result. #InfectedBloodInquiry
— The Haemophilia Society Public Inquiry Team (@HaemoSocUK_PI) December 3, 2020
The inquiry heard that according to minutes from the Haemophilia Centre Directors AGM on October 17 1983, one of the reference centre directors – Professor Bloom – said he felt there was no need for patients to stop using commercial concentrates because there was no proof they were the cause of Aids.
Prof Ludlam said: “There was good circumstantial evidence but I suppose it’s true to say there was no proof.”
Ms Richards said a ban on imported concentrates was not in the reference centre directors’ gift, but they “failed to address at all in this two-and-a-half-year period, as far as we can see from the minutes, any question of giving the provision of advice or warnings about risks of treatment to patients”.
She asked whether this was good enough.
Prof Ludlam said there was a “reasonable view” that the majority patients were aware of any risks following articles in the press and information from the Haemophilia Society.
The inquiry before chairman Sir Brian Langstaff continues on Friday.