Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what was the cost to the public purse of (a) research, (b) new treatments and (c) clinical care for (i) sickle cell disease and (ii) cystic fibrosis in the 2022-23 financial year.

The Department funds health and care research through the National Institute for Health and Care Research (NIHR). In the 2022/23 financial year, so far, NIHR Programmes have spent nearly £1.7 million on sickle cell disease research and nearly £2.7 million on cystic fibrosis research.

There has also been one specialised clinical trial assured for sickle cell disease since the publication of the Excess Treatment Costs guidance, however, it is not possible to separate costs for patients on the trial from costs relating to standard care treatment.

New innovative treatments, such as Crizanlizumab for sickle cell disease, are subject to National Institute for Health and Care Excellence commercial confidentiality agreements. There have been no new treatments for cystic fibrosis commencing during 2022/23.

Regarding treatment costs, there is a range of care and treatments available for sickle cell disease, which is not split by diagnosis, and therefore cannot be separately identified. The following table shows total expenditure on drugs and clinical care for cystic fibrosis.

Source: NHS Contract monitoring information