Mar. 19 2024
Source Page: FOI responses published by MOD: week commencing 18 March 2024Found: cell disease, hereditary spherocytosis, homozygous α or β thalassaemia, haemoglobinopathy, or any haemorrhagic
Mar. 14 2024
Source Page: Q2 (1 July to 30 September 2023) ANNB and YPA screening KPI dataFound: Q2 (1 July to 30 September 2023) ANNB and YPA screening KPI data
Mar. 14 2024
Source Page: Q1 (1 April to 30 June 2023) ANNB and YPA screening KPI dataFound: Q1 (1 April to 30 June 2023) ANNB and YPA screening KPI data
Mentions:
1: Bell Ribeiro-Addy (Lab - Streatham) Adjuah had sickle cell anaemia, the UK’s fastest growing genetic condition, but her untimely death was - Speech Link
2: Penny Mordaunt (Con - Portsmouth North) I will facilitate and help him to secure debates and raise questions, and to do anything else he wants - Speech Link
Asked by: George Howarth (Labour - Knowsley)
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 (a) NICE and (b) NHS England on encouraging the adoption of new treatments for (i) sickle cell disease and (ii) 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 new treatments.
The NICE appraises all new licensed medicines, and its recommendations are developed independently in line with its established methods and processes, on the basis of an assessment of the available evidence, and through extensive engagement with stakeholders. NHS England is legally required to fund treatments recommended in NICE technology appraisal guidance.
Feb. 06 2024
Source Page: Public Health Outcomes Framework: February 2024 data updateFound: England Region County and Unitary Authority No additional breakdown 16 years and over Yes OHID
Mentions:
1: Janet Daby (Lab - Lewisham East) What steps she is taking to improve healthcare outcomes for patients with sickle cell disease. - Speech Link
2: Andrew Stephenson (Con - Pendle) Lady in her role as chair of the sickle cell and thalassaemia all-party parliamentary group. - Speech Link
3: Janet Daby (Lab - Lewisham East) Why is that still not happening for sickle cell patients, and would the Minister like to meet me and - Speech Link
4: Andrew Stephenson (Con - Pendle) Lady and the Sickle Cell Society to look at how we can improve patient experiences and ensure that all - Speech Link
Dec. 14 2023
Source Page: Q1 (1 April to 30 June 2023) ANNB and YPA screening KPI dataFound: Q1 (1 April to 30 June 2023) ANNB and YPA screening KPI data
Dec. 06 2023
Source Page: FOI responses published by MOD: week commencing 4 December 2023Found: cell disease, hereditary spherocytosis, homozygous α or β thalassaemia, haem oglobinopathy, or any
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.