Edward Tuddenham is one of the few hemophilia specialists who still treated patients at the start of the infected blood scandal in the early 1970s.
Having patients infected with HIV and hepatitis C during treatment “is the worst thing you can imagine,” he said.
Professor Tuddenham went on to be one of the UK’s leading haematologists, isolating the gene that causes the key “factor 8” protein to be missing in many people suffering from bleeding disorders.
Their discovery has led to safe treatments for hemophilia that do not require the use of potentially contaminated donated human blood – the ultimate cause of the disease. infected blood scandal.
But he has been tainted by his role in that scandal for almost his entire career.
At first he treated patients with hemophilia at the Royal Free Hospital in London.
The new treatment at the time was called factor concentrate, made with the main clotting factors absent in the blood of hemophiliacs. It was revolutionary.
More about infected blood investigation
“It was a huge step forward. And convenience, predictability, the ability to offer patients a product that they could take with them and treat themselves with,” Professor Tuddenham said.
Before concentrates became available, severe hemophiliacs would often have to stay in the hospital weekly to receive transfusions of blood plasma from a donor patient to control bleeding that could otherwise be fatal.
Infected blood survivor speaks out
But even in the 1970s, there were concerns about the safety of new drugs.
Made by concentrating the main clotting factors 8 and 9 from the blood of thousands of donors, any contamination in one of them would contaminate an entire batch.
The fact that the gravity of this risk was not appreciated at the time haunts his memory.
“The amount of effort that should have been put into inactivating the viruses, and that had already started in the late 1970s and started to be effective, was simply not invested,” he said.
If this had been done, thousands of hemophiliacs would not have become infected with hepatitis C, which, we now know, many of them were during the 1970s and 1980s.
See more information:
The boys secretly experimented at school
Blood service collected donations in prisons despite warnings – inquiry
It would also have saved hemophiliacs from a new virus that doctors like Prof. Tudenham unwittingly injected HIV into his veins.
The virus transformed into factor concentrates from US blood donors at the very beginning of the HIV epidemic in the United States in the early 1980s.
New, safer treatments arrived around 1986, but by then “it was too late”, said Professor Tuddenham.
‘I went to funerals all the time’
By this time, Professor Tuddenham had left the clinic to work full-time on the genetics of factor 8, work that would lead to much safer synthetic treatments.
But he kept in touch with former patients.
“I attended funerals regularly,” he said.
Use the Chrome browser for a more accessible video player
6:20
Blood scandal ‘the worst thing’
Prof Tuddenham is not a popular figure among survivors of the infected blood scandal.
He defended some of his actions at the time, and those of his colleagues, including the decision to carry out trials on children to investigate the effectiveness of new treatments that doctors knew could be contaminated with deadly viruses.
“Of course you couldn’t justify it now. But could you justify it then?” he asked.
“A trial on a human being was, at the time, the way to distinguish effectiveness. But yes, it is experimental medicine.
“Hindsight, of course, tells us that this led to many people becoming infected and, as a result, many people dying. At the time, our risk-benefit balance was seriously misinformed,” said Professor Tuddenham.
“Having caused this in the treatment process is the worst thing you can imagine.”
It is the job of the infected blood inquiry to decide what might have been acceptable, or even inevitable at the time, from what was wrong – even by the standards of the time.
The inquiry is expected to publish its final report on May 20.
This story originally appeared on News.sky.com read the full story