| Heading: |
Batten Disease: Medical Treatments |
| Question ID: |
1760114 |
| UIN: |
HL4569 |
| House: |
Lords |
| Date tabled: |
2025-01-29 |
| Asking Member ID: |
4970 |
| Asking Member display name: |
Lord Weir of Ballyholme
|
| Asking Member handle: |
LordWeirDUP
|
| Asking Member Twitter reference: |
@LordWeirDUP
|
| Member interest: |
false |
| Question text: |
To ask His Majesty's Government whether permanent funding will remain in place for the treatment of infantile and juvenile Batten disease. |
| Is named day: |
false |
| Date of holding answer: |
|
| Date answered: |
2025-02-05 |
| Date answer corrected: |
|
| Is holding answer: |
false |
| Is correcting answer: |
false |
| Answering Member ID: |
347 |
| Answering Member display name: |
Baroness Merron
|
| Answering Member handle: |
|
| Answering Member Twitter reference: |
Baroness Merron
|
| Correcting Member ID: |
|
| Correcting Member display name: |
|
| Correcting Member handle: |
|
| Correcting Member Twitter reference: |
|
| Answer text: |
The National Institute of Health and Care Excellence (NICE) published guidance in 2019 that recommended cerliponase alfa, brand name Brineura, for treating neuronal ceroid lipofuscinosis type 2, within a managed access agreement. This was due to the uncer... |
| Original answer text: |
|
| Comparable answer text: |
|
| Answering body ID: |
17 |
| Answering body name: |
Department of Health and Social Care |
| Tweeted: |
true |