All 12 men died last year. At least 2,000 more people are infected, and four have had liver transplants as a result.
Another 3,000 adults and children, who are not haemophiliacs but did receive fresh blood transfusions before 1991, may also have been infected, according to the Blood Transfusion Service, but are unaware of their condition.
The emergence of these previously unreported deaths echoes the case of hundreds of haemophiliacs who caught the Aids virus from contaminated blood. Haemophilia is an inherited disease whose major symptom is the failure of the blood-clotting mechanism. Haemophiliacs, who are always male, often have to be given blood-clotting agents - called ``factors'' - which are produced from donated blood.
Doctors say 90 to 95 per cent of haemophiliacs who used factors regularly before May 1985 have contracted hepatitis C.
Now the Haemophilia Society is considering seeking redress from the Department of Health. The society is organising meetings to inform haemophiliacs and is in contact with the department.
The National Blood Authority is also considering what action to take. Dr Fereydoun Ala, chairman of the Standing Advisory Committee on Transfusion Transmitted Infections, said: ``Those working in the field believe we have a duty of care of patients and that we should be open about this. We are deciding how we can best proceed.'' At the same time, the consultants who head the regional haemophilia centres around the country have their own working party on haemophilia and hepatitis.
The hepatitis C virus (HCV) was only identified in 1989. Before that, it was recognised as non-A, non-B hepatitis. It is a slow, chronic condition leading to cirrhosis of the liver in 20 per cent of cases. Ten per cent of these go on to liver failure in five years. Symptoms of liver disease can take 10 to 30 years to develop. Doctors admit they still do not know enough about the progress of the disease.
Hepatitis C is transmitted by blood-to-blood contact, mostly via transfusions and injections. In 1985, blood products, including the clotting agent Factor VIII, were subjected to anti-viral heat treatment designed to eradicate HIV. Haemophilic boys up to the age of 10 who use factors are not, therefore, at risk. No cases of hepatitis C in this group have come to light for the past nine years.
However, fresh whole blood or fresh parts of blood cannot be treated in the same way.
In June 1991, the Department of Health paid out a total of pounds 42m to 1,200 haemophiliacs who caught HIV from factors made from infected blood.
In September 1991, on advice from the Department of Health, the Blood Transfusion Service began to screen donors for hepatitis C to protect the blood supply.
Simon Taylor, vice-chairman of the Haemophilia Society, said: ``At this stage, because the information about hepatitis C is so slight we are not sure which way we should proceed. The difficulty is the vast majority of haemophiliacs have no hepatitis symptoms because the disease could take 30 years to show itself. There is no medical consensus on diagnosis, treatment or prognosis. One thing we are considering is seeking compensation when people become ill.''
Haemophilia experts say the true number of patients infected with hepatitis C is not known but 2,000 is a reasonable estimate.
There are 10,000 men and boys with haemophilia in the UK. Of these, 2,500 - including 500 boys aged under 10 - need factors regularly, the rest intermittently. Mr Taylor said most of the 2,000 adults had contracted hepatitis C.
The infection rate is very high because between 20,000 and 30,000 donations are pooled to produce the factors.
Dr Ala, who is also director of the West Midlands Blood Transfusion Centre, said they were able to arrive at the estimate of the 3,000 transfusion patients with hepatitis C by checking the records of blood donors who were subsequently found to have hepatitis C.
``What we now have to consider is whether we identify the recipients and contact them. These people may have no symptoms at all. These are very difficult issues,'' said Dr Ala.
A spokesman for the Department of Health said: ``We have the greatest sympathy for these people.
``There are no plans to extend the settlement scheme for haemophilia patients who are HIV-positive to patients who have been infected with hepatitis C. The Government does not have a policy of no-fault compensation. Patients received the best available treatment in the light of medical knowledge at the time.''
Background, page 3
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