In what is believed to be the first case of its kind, the boy is taking action against Bury and Rochdale Health Authority after it decided that he would no longer be treated with a purer, artificial form of the clotting agent Factor VIII, but a cheaper version which carries a higher risk of viral infection.
Doctors are largely unanimous in their view that recombinant Factor VIII, is preferable to plasma-derived Factor VIII, which is made from treated human blood, for all haemophiliacs but especially for children.
Rebecca Fitzpatrick, the boy's solicitor, said the health authority's decision was "irrational, unfair and perhaps illegal". He had been treated with recombinant since October but he and other children were informed in January that they would now be treated with plasma-derived Factor VIII.
Ms Fitzpatrick said the family were applying for leave to seek a judicial review with a hearing next week. Meanwhile, they hope for an intermediate injunction which will force the health authority to continue to provide the treatment.
"They are not giving him the best treatment available. It is a blanket- policy decision covering potentially hundreds of people and they have not considered individual cases," she said.
Plasma-derived Factor VIII fell under the spotlight in the Eighties, when 1,200 haemophiliacs were infected with HIV from contaminated Factor VIII. About 3,000 haemophiliacs have been infected with Hepatitis C to date. Screening has since been tightened but two viruses, Hepatitis A and parvo-virus, are resistant to all sterilisation techniques, and there is also the danger by viruses yet to be identified.
The UK's use of recombinant is 4-10 per cent of all Factor VIII given, compared with 50 per cent in Germany. But it costs half as much again as the plasma-derived product, and if a health authority refuses to pay, a doctor has little choice but to prescribe the less safe product.
Tony Wilson, chief executive of the Haemophilia Society said yesterday: "[We believe] that recombinant Factor VIII should be available for the treatment of children with Haemophilia A and [we] deplore the fact that parents should be forced to take legal action to try to obtain treatment for their children.
"The Society believes that the current situation, with children in some parts of the country being able to receive recombinant Factor VIII and others not, is grossly inequitable ... "
But Kevin Snee, director of public health for the authority, said the main benefit of transferring patients to recombinant Factor VIII "revolves around the removal of a hypothetical risk" and would cost an additional pounds 200,000 a year in Bury and Rochdale. As the current financial situation stands, Dr Snee said the money could be better spent on other treatments of greater benefit.
"Current blood products are safe and therefore recombinant factor VIII is difficult to justify when compared to other health service priorities," he said. "However, as the situation becomes clearer with regard to the uncertainties over antibody production with recombinant factor VIII our position will be reviewed."Reuse content