Concern over patients with rare disease

The Civitas think tank said a little-noticed recent decision by the Government to reject advice on the commissioning of a new drug indicated health service rationing was moving on to new ground.

A report by former Department of Health adviser Tony Hockley found ministers had gone against the recommendation of the Advisory Group for National Specialised Services that Soliris should be made available on the NHS for the treatment of atypical haemolytic uraemic syndrome (aHUS), a condition fewer than 20 patients a year are diagnosed as having.

“Ministers should give an honest explanation of their interpretation of ‘affordability’ and their views on the apparent trade-off between life-saving treatments for the few and routine NHS services for the many, and explain the alternatives available to those affected by these decisions,” he said.