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Hemophiliacs' Fear Of CJD In
Blood Sparks Therapy Boycott
By James Meikle - Health Correspondent
http://www.guardianunlimited.co.uk/bse
1-31-01


The government was last night facing the embarrassing prospect of a "treatment strike" by growing numbers of haemophiliacs seeking to shame ministers into paying for safer blood clotting agents.
 
As the government sought to calm protests over the way haemophiliacs, as late as 1997, had been exposed to potential infection from the human form of BSE, the Department of Health said patients should first consult their GPs.
 
People with haemophilia are furious that for the third time in just over three years patients are being told that they have used products that have been found to include material from a variant CJD victim.
 
The news, first reported in the Guardian this month, has forced ministers to consider whether to give adult haemophiliacs in England access to laboratory-made alternatives, as happened for children in Britain, and for adults in both Scotland and Wales.
 
The Haemophilia Society said it had heard more patients were refusing treatment with clotting factor from human sources and joining networks that allow patients who do get the synthetic type, called recombinant, to send part of their dose to others without it.
 
This is almost certainly illegal. But one patient who did this in the autumn forced his local health authority to pay for the more expensive recombinant factor.
 
Karin Pappenheim, director of the Haemophilia Society, said it was not clear how many people might be affected by the postcode lottery over access to clotting treatment, but it could be as high as 2000.
 
The government ordered the import of most blood plasma products two years ago because of the theoretical risk of infection by donors who had vCJD. Thirteen of the 88 known vCJD victims had been blood donors. A spokeswoman for the Department of Health said that the risk of vCJD from existing clotting factors was "unsubstantiated".

 
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