Legal challenge to rationing of haemophilia treatment is lostBMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7082.695 (Published 08 March 1997) Cite this as: BMJ 1997;314:695
A High Court judge in London last week refused to give the families of four boys with haemophilia the go ahead to challenge a decision by their local health authorities to withdraw treatment with the genetically engineered blood clotting agent recombinant factor VIII.
Duncan Ouseley, QC for the boys, aged between 5 years and 9 years, told Mr Justice Jowitt that South Lancashire, East Lancashire, and Bury and Rochdale Health Authorities had all made “flawed” decisions and failed to consider each individual case on its merits. But the judge said that health authorities had the right to adopt certain policies, and the parents would have an arguable case only if they could establish that their children had special needs that the authority had failed to consider. The application was “premature” because they had not yet applied for their children to be considered as exceptional.
Mr Ouseley told the judge that the children had been treated with factor VIII derived from human blood until October 1996, when they were switched to the newer recombinant factor VIII, prescribed by their doctors. But the three health authorities had decided that the human blood-derived product was quite safe and the advantages of the newer treatment did not justify the extra cost. The court heard that the genetically engineered product cost each authority an extra £200000 ($320000).
Thousands of patients with haemophilia were infected with hepatitis C and HIV from human blood-derived factor VIII. This is now heat treated to destroy all viruses, but the parents fear that it could be contaminated by unknown viruses. After the judgment, Ann Alexander, solicitor for one of the families, said: “The judge refused us leave to proceed to judicial review but made it quite clear that he accepts that families can go along to the health authorities and express individual grounds which would justify having this treatment.” But the judge warned that it was wrong for parents to think they could “rush off and be treated to their satisfaction as special cases.” They should not build up false expectations because it could be difficult to show that their child was a special case.
Recent guidelines from the UK Haemophilia Centre Directors Organisation favour recombinant factor VIII over the human blood-derived clotting factor (p 749). They state that new patients and those not infected with viruses should be regarded as priority groups for receiving recombinant factor VIII if it has to be phased in on grounds of cost. In Scotland special funds have been set aside for the treatment, but in England and Wales its use is patchy.
Philip Hunt, director of the National Association of Health Authorities and Trusts, said: “This clearly shows the enormous pressures the NHS is under to make decisions about priorities.”