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<p>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.</p><p>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.</p><p>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.</p><p>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.</p><table><tbody><tr><td><p>Year</p></td><td><p>High-cost
drugs</p></td><td><p>Clinical care</p></td></tr><tr><td><p>2021/22 (full year)</p></td><td><p>£438,042.681</p></td><td><p>£127,585,986</p></td></tr><tr><td><p>2022/23
to M11 (Feb 23)</p></td><td><p>£470,103,672</p></td><td><p>£120,136,690</p></td></tr></tbody></table><p>Source:
NHS Contract monitoring information</p>
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