Haemophilia: the ongoing scandal

ONCE upon a time, one of the treatments for haemophilia, a hereditary condition where the blood fails to clot, was snake venom. Perhaps unsurprisingly it wasn't terribly effective - and neither was frozen plasma nor the other treatments used before the 1970s.

However, in the 1970s a new treatment was introduced - concentrated factor products, which contained the clotting agent haemophiliacs lack.

A breakthrough, you would think, for people with a condition which can cause spontaneous bleedings into muscles and joints as well as externally.

Sadly, that medical dream has turned into a nightmare for the many haemophiliacs who have been left infected with hepatitis C, as the condition became known in 1989, due to transfusions of clotting agents during the 1970s and 1980s.

Contaminated blood products led to the infection of about 4800 haemophiliacs in Britain with hepatitis C and 1200 with HIV (of whom just 300 are still alive). But what is more than sad, what is an outright scandal, is that in 2006 we are still trying to find out answers to why this happened - and what officials knew about it.

Today, World Haemophilia Day, the Scottish Parliament's health committee will decide whether to hold an independent public inquiry into this issue - an inquiry we have been pressing for for many years.

We know that blood was being donated by high-risk groups such as prisoners during the 1970s and 1980s - which appears to coincide with the period that people developed hepatitis C. Only transfusions after 1991 are deemed to be safe - England introduced heat treatment which killed hepatitis C in 1985, but that was not brought in in Scotland until the end of 1987. Even then, products taken from before this were not withdrawn.

Evidence has been emerging over the last few years that the infections were not an inevitable tragedy due to a lack of medical knowledge.

Papers released under the Freedom of Information Act show doctors were aware people with haemophilia had developed hepatitis in the 1970s and were testing patients for the condition without their consent. Even Andy Kerr, the Health Minister, admitted in January that doctors knew about the hepatitis issue in 1975. But it would be 15 years before patients were told they had hepatitis C. Why was that? We've never had a clear answer.

Documents also show that at the time, concern was dismissed on the basis that people with haemophilia were unlikely to live beyond middle age!

But this issue is not in the past. It can take between ten and 20 years for people to begin to suffer the effects of hepatitis - so those who received an infected blood transfusion as late as 1991 may not yet realise they are infected. In the meantime, they may have infected their partners or even passed it on to their children.

Recent government documents acknowledge that there may be in excess of 3000 people who received blood transfusions up until 1991, who may have been infected with hepatitis C but because they have never had any need for a blood test are absolutely oblivious of this fact. No attempt has been made to trace these people.

If a surgeon was found to have HIV or hepatitis C or there was an error with smear tests, the hospital trust in question would be expected to try to trace the patients. If a commercial company finds a fault with a product they are expected to recall that item, paying for advertising in order to alert the public. So why is the Government not attempting to trace these people?

Since 1999 we've been fighting for a public inquiry in Scotland. Back then around 80 MSPs from all parties backed a motion for an independent public inquiry into why people with haemophilia were infected with hepatitis C as the result of blood products. Sadly, the motion was defeated by Labour and Lib Dem MSPs.

Since then we've met MSPs from all parties, given evidence to the health committee and met with all three Scottish health ministers. We've seen an "expert group" set up by the Scottish Executive in 2002. Its recommendations, reported in 2003, were payments of 50,000 - considerably less than the average 300,000 payment made in Ireland - to people who had developed chronic hepatitis C from blood products or transfusions, plus a fast-track legal route for additional payments for those who developed cirrhosis or cancer. The health minister decided to reject these recommendations.

And all the time, as we delve deeper, more questions are thrown up.

Why were the minutes of the then-health minister David Owen's 1975 meeting with officials about improving blood screening destroyed by officials, given that ministerial papers should be held for 30 years? Why were documents on the blood transfusion service "accidentally" destroyed at the end of 2005?

Why has the Executive not released all the papers relating to this issue under the Freedom of Information Act?

Why was it made so difficult for patients to access their medical records? Why, in some instances, when they obtained their records - from different hospitals - did they find the same period of their treatment history was missing?

It sounds like a wild conspiracy theory to imagine central government is involved in some sort of cover-up - but frankly, unless we get clear answers from an independent public inquiry, it's becoming harder for us to believe anything else.

Philip Dolan is chairman of the Scottish Haemophilia Forum