Table 1 Overall 2004 cost to the NHS of care for those with cystic fibrosis (CF)
% of patientsHospital costsDrug costs*Total cost
TotalVariableFixedTotalCentreGP
Diagnostic year38103371543882000200010 103
Band 1 mild3718507241126200020003850
Band 2 moderate1712 3888000438823 500800015 50035 888
Band 3 severe2424 87711 39813 47936 90012 00024 90061 777
Band 4 extra severe1653 03522 73030 30541 90016 00025 90094 935
Band 5 awaiting transplant3Average 83 54834 98248 56648 000–100 000†48 000–100 000
  • Reproduced with permission from the UK CF Trust. Most children will be in the lower bands. The cost of drugs is normally cumulative, although in some cases substitutions may occur. As patients move up the banding system, more drugs will be necessary. Expensive drugs such as DNase and TOBI will normally be given on a shared basis, with the CF specialist hospital centre bearing the cost of the trial period, after which the GP will be asked to prescribe the drug if it is recommended to be continued.

  • *Not all patients will need all of these drugs.

  • †At this stage, patients spend most of their time in hospital, with spells of being cared for intensively by the CF team at home, so their drug costs will be borne by the hospital.

  • GP, general practitioner.