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Written Question
Blood Diseases: Medical Treatments
Monday 27th November 2023

Asked by: Janet Daby (Labour - Lewisham East)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions she has had with NHS England and the National Institute for Health and Care Excellence on access to new treatments for sickle cell disease and beta thalassaemia.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The Department regularly discusses a range of issues with colleagues in NHS England and the National Institute for Health and Care Excellence (NICE) related to patient access to effective new treatments. NICE appraises all newly licensed medicines and aims to publish draft guidance around the time of licensing wherever possible. NICE works closely with the Medicines and Healthcare products Regulatory Agency and NHS England to ensure that there is a joined-up, timely approach to supporting access to new treatments for National Health Service patients.

NICE is currently appraising exagamglogene autotemcel for treating transfusion-dependent beta-thalassaemia and sickle cell disease, and expects to publish final guidance in March and April 2024 respectively.


Non-Departmental Publication (News and Communications)
Medicines and Healthcare products Regulatory Agency

Nov. 16 2023

Source Page: MHRA authorises world-first gene therapy that aims to cure sickle-cell disease and transfusion-dependent β-thalassemia
Document: MHRA authorises world-first gene therapy that aims to cure sickle-cell disease and transfusion-dependent β-thalassemia (webpage)

Found: MHRA authorises world-first gene therapy that aims to cure sickle-cell disease and transfusion-dependent


Westminster Hall
Future of the NHS - Tue 24 Oct 2023
Department of Health and Social Care

Mentions:
1: Janet Daby (Lab - Lewisham East) questions on the future of the NHS for sickle cell patients. - Speech Link
2: Preet Kaur Gill (LAB - Birmingham, Edgbaston) about sickle cell disease and equality in the NHS, and the hon. - Speech Link


Non-Departmental Publication (Statistics)
NHS England

Sep. 21 2023

Source Page: Q4 KPI Screening Data (1 January to 31 March)
Document: (Excel)

Found: cell and thalassaemia (SCT) screening for whom a screening result is available at the day of reportST2


Non-Departmental Publication (Statistics)
NHS England

Sep. 21 2023

Source Page: Q4 KPI Screening Data (1 January to 31 March)
Document: (ODS)

Found: infant physical examination (screening programme) SCT Sickle cell and thalassaemia (screening programme


Non-Departmental Publication (Guidance and Regulation)
Public Health England (PHE)

Aug. 17 2023

Source Page: Sickle cell and thalassaemia (SCT) screening: programme overview
Document: Sickle cell and thalassaemia (SCT) screening: programme overview (webpage)

Found: Sickle cell and thalassaemia (SCT) screening: programme overview


Non-Departmental Publication (Statistics)
NHS England

Aug. 17 2023

Source Page: 2021/22 Sickle cell and thalassaemia screening (SCT) screening report
Document: 2021/22 Sickle cell and thalassaemia screening (SCT) screening report (webpage)

Found: 2021/22 Sickle cell and thalassaemia screening (SCT) screening report


Non-Departmental Publication (Statistics)
NHS England

Aug. 17 2023

Source Page: 2021/22 Sickle cell and thalassaemia screening (SCT) screening report
Document: (ODS)

Found: 2021/22 Sickle cell and thalassaemia screening (SCT) screening report


Non-Departmental Publication (Guidance and Regulation)
NHS England

Jul. 24 2023

Source Page: Sickle cell and thalassaemia screening programme: standards
Document: Sickle cell and thalassaemia screening programme: standards (webpage)

Found: Sickle cell and thalassaemia screening programme: standards


Non-Departmental Publication (Guidance and Regulation)
NHS England

Jul. 14 2023

Source Page: Managing safety incidents in NHS screening programmes
Document: (webpage)

Found: within three working days to SQAS and SIT.