Cystic Fibrosis and Sickle Cell Diseases: Health Services
(asked on 7th March 2022) - View Source
Question to the Department of Health and Social Care:
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.
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.