James Meikle on haemophiliacs and infected blood

The NHS has accidentally infected 4,800 British haemophiliacs with the hepatitis C virus. Of these, 1,200 have also been infected with HIV; a third of them remain alive. Now there is a theoretical risk that the NHS has infected some of these people with the human form of BSE, the fatal variant CJD.

No wonder many haemophiliacs are angry. As many as 5,000 people in Britain need a "clotting factor" (made from blood plasma) to treat the painful, excessive bleeding that swells their muscles as a result of haemophilia. Imagine finding out that these products were made from contaminated blood.

And it is no wonder adult haemophiliacs in England are demanding the same "safer" synthetic alternative (known as recombinant) that is on offer to child sufferers throughout Britain, and to older patients in Scotland, Wales and Northern Ireland. You might think any government, having seen the effects of two previous mistakes involving tainted blood supplies, would be keen to cough up the extra cash for such treatment.

But not a bit of it. Ministers, under pressure from the Haemophilia Society's campaign for recombinant and a public inquiry into the overall safety of blood products, appear more worried about the effect "sensationalist" press coverage would have in further distressing patients.

Decisions on providing recombinant should be made on clinical grounds, not on whether a fuss is made. Haemophilia doctors say recombinant should be on offer, although British-sourced products, which might carry vCJD infection from donors, were replaced by US plasma in 1998. Paul Giangrande, at the Churchill centre in Oxford, says this could cost an extra £23m a year.

He, like many other centre directors, is ignoring general NHS guidance not to tell patients they have been treated with products that included material donated by someone who went on to develop vCJD. The third warning of this type, relating to treatments given before the switch to US human product, was sent out by the blood service before Christmas. Dr Giangrande has informed 85 of his patients.

Three years ago, batches involving other vCJD patients had to be recalled. Then, some directors, including Dr Giangrande, told; some did not. Now the NHS is reviewing that don't-tell policy, implemented because vCJD cannot be detected before symptoms are evident. It is also untreatable and incurable. Some haemophiliacs are convinced they have been infected again, and some of the most militant sufferers believe they are acting the canaries in the coal mine in an experiment to see if vCJD can be transmitted through blood.

Reassurances from officials may have little impact. Sufferers know that the NHS, worried enough to have changed the source of most plasma and to have introduced other blood controls at a combined cost of £83m a year in England and North Wales, has been further alarmed by evidence from an experiment with sheep that showed BSE can be transmitted by transfusion. Now officials are considering whether anyone who has received a blood transfusion should be allowed to donate blood themselves.

It could be years before we know if there has been human transmission. The incubation period of vCJD is unknown, and the disease has been identified for less than five years. If most of the current 94 victims were infected by cheap meat products in the mid-80s, how much longer before we know the condition's eventual scale?

Thirteen victims so far have been blood donors, their donations transfused into 23 people, as well as going into blood products used by thousands at home and abroad. The government should be desperately seeking to shore up confidence in blood transfusion, but when it is gearing up to spend £200m on new hospital sterilisation measures, £30m on disposable instruments for tonsillectomies and, if necessary, a great deal more on changing other surgical procedures, can they blame haemophiliacs for thinking another £23m is small change?

• James Meikle is the Guardian's health correspondent. Sarah Boseley is away.

Thanks to guardian.co.uk who have provided this article. View the original here.