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Rare Diseases: Drugs

Question for Department of Health and Social Care

UIN 202779, tabled on 16 October 2023

To ask the Secretary of State for Health and Social Care, how many single technology appraisals for medicines for rare diseases conducted by the National Institute for Health and Care Excellence resulted in (a) a positive recommendation, (b) an optimised recommendation, (c) a recommendation for managed access, (d) a negative recommendation and (e) termination in each financial year since 2018-19.

Answered on

20 October 2023

The following table shows a breakdown of technologies with designated orphan status appraised through the National Institute for Health and Care Excellence resulted single technology appraisal process by financial year from 2018/19:

Financial Year

2018/19

2019/20

2020/21

2021/22

2022/23

Total

Recommended

2

1

6

11

5

25

Recommended (Cancer Drugs Fund)

2

2

4

0

0

8

Optimised

3

9

3

3

8

26

Optimised (Cancer Drugs Fund)

1

1

0

1

0

3

Research Only

0

0

0

0

0

0

Not Recommended

2

0

0

1

2

5

Total

10

13

13

16

15

67

Terminated

1

5

5

10

2

23

Medicines with an orphan designation are for the diagnosis, prevention or treatment of a life-threatening or chronically debilitating condition that is rare, namely affecting not more than five in 10,000 people in Great Britain, or where the medicine is unlikely to generate sufficient profit to justify research and development costs.