PARLIAMENTARY WRITTEN QUESTION
Cystic Fibrosis and Sickle Cell Diseases: Health Services (7 March 2022)

To ask the Secretary of State for Health and Social Care, how much public funding has been spent on (a) research, (b) new treatments and (c) clinical care for (i) sickle cell disease and (ii) cystic fibrosis in each of the last five years.

Asked by:
Marsha De Cordova (Labour)

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The following table shows the total award expenditure on NIHR-funded research programmes relating to sickle cell disease and cystic fibrosis in each of the last five years.

Financial year	Sickle cell disease	Cystic fibrosis
2017/18	£150,396	£1,297,912
2018/19	£131,709	£831,339
2019/20	£99,063	£144,976
2020/21	£196,198	£615,475
2021/22	£943,602	£2,440,800

In the last five years the NIHR has also supported the delivery of 54 studies relating to sickle cell disease and 130 studies relating to cystic fibrosis via its Clinical Research Network (CRN). However, information on expenditure for specific CRN-supported studies is not available in the format requested.

There are a range of care and treatments available for sickle cell disease. Information on the total funding of new treatments or clinical care for sickle cell disease in England is not held in the format requested.

The following table shows total expenditure on high-cost drugs, which includes the cost of new treatments, and clinical care for cystic fibrosis.

Year	High-cost drugs £	Clinical care £
2017/18	13,438,326	45,641,077
2018/19	80,524,960	108,454,676
2019/20	116,568,939	123,425,771
2020/21	316,447,363	127,204,405
2021/22 to December 2021	360,783,738	99,406,649

Source: NHS contract monitoring information system – Secondary User Services

Note:

Data collected in 2017/18 may not be comparable to data in other years due to the way in which the information was collected.

In 2020/21, half of patients benefited from home monitoring with £1,165,200 made available to provide remote spirometry. This was to allow clinical teams to monitor and support people with cystic fibrosis who were advised to shield and reduce the need for face-to-face assessments and hospital visits.

Answered by:
Gillian Keegan (Conservative)
28 April 2022