Found: by rare, genetic and undiagnosed conditions
Found: CPG on Rare Genetic Undiagnosed Conditions AGM 8 September 2022 Minutes
Found: The Cross Party Group on Rare, Genetic and Undiagnosed Conditions has continued to play a vital role
Mentions:
1: Peter Dowd (Lab - Bootle) genetic condition.”Its solution is:“It is necessary to urgently improve awareness of rare conditions - Speech Link
2: Liz Twist (Lab - Blaydon) , genetic and undiagnosed conditions.According to the Royal College of Psychiatrists, people with physical - Speech Link
3: Abena Oppong-Asare (Lab - Erith and Thamesmead) Friend the Member for Blaydon, who chairs the all-party parliamentary group on rare, genetic and undiagnosed - Speech Link
Mentions:
1: None conditions, is something that added mobility can certainly help with. - Speech Link
2: Doris, Bob (SNP - Glasgow Maryhill and Springburn) I am the convener of the cross-party group on rare, genetic and undiagnosed conditions and the CPG on - Speech Link
3: None chest disease, which are all long-term conditions, and we know that roughly 40 per cent of those on - Speech Link
4: None The likelihood that someone will recover from some of the conditions that might make them eligible for - Speech Link
5: Doris, Bob (SNP - Glasgow Maryhill and Springburn) I do not want to put words into your mouth, Mr Stachura, but would it be self-evident that some conditions - Speech Link
Asked by: Feryal Clark (Labour - Enfield North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent steps his Department has taken to reduce health inequalities for people with (a) rare, (b) genetic and (c) undiagnosed conditions in Enfield North constituency.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
It is the responsibility of integrated care systems to make available appropriate provision to meet the health and care needs of their local population. England’s 2023 Rare Diseases Action Plan, that aims to improve the lives of those living with rare, genetic and undiagnosed conditions, includes a specific action to address health inequalities. This action is to gather the evidence needed to include rare diseases in NHS England’s Core20PLUS5 Framework. This will enable integrated care systems, including the North Central London integrated care board, to develop targeted actions to reduce these inequalities in their local populations. Additionally, the UK Rare Diseases Framework commits the four nations to ensure any impacts on health inequalities are considered when developing action plans for rare conditions.
Genomics England will lead a programme to carry out tailored genomic sequencing of 15,000 to 25,000 research participants from diverse ancestry groups that are currently under-represented in genomic research. This will increase our understanding of genomic diversity and its impact on scientific, clinical and health system outcomes, aiming to reduce health inequalities, and improve patient outcomes across all communities.
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent steps he has taken to ensure people from low-income backgrounds have access to advanced therapies for (a) rare, (b) genetic and (c) undiagnosed conditions.
Answered by Will Quince
The Government is committed to supporting access to clinically and cost effective new treatments for National Health Service patients, including for rare, genetic and undiagnosed conditions. The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the NHS on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund treatments recommended by NICE, usually within three months of final guidance. This means that any treatment positively appraised by NICE should be available for clinicians to offer to all their eligible patients.
NHS England has struck commercial agreements with the manufacturers of several cell and gene therapies that have enabled NICE to recommend them for routine NHS use or through the Cancer Drugs Fund. These treatments are now available for the treatment of all NHS patients.
The Innovative Medicines Fund was launched in June 2022 and will allow patients to benefit from early access to the most promising medicines where there is too much uncertainty for NICE to be able to recommend routine funding. This will further support the rapid introduction of effective new medicines for the benefit of NHS patients.
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent steps his Department is taking to increase accessibility for cell and gene therapies.
Answered by Will Quince
The Government is committed to supporting access to clinically and cost effective new treatments for National Health Service patients, including for rare, genetic and undiagnosed conditions. The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the NHS on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund treatments recommended by NICE, usually within three months of final guidance. This means that any treatment positively appraised by NICE should be available for clinicians to offer to all their eligible patients.
NHS England has struck commercial agreements with the manufacturers of several cell and gene therapies that have enabled NICE to recommend them for routine NHS use or through the Cancer Drugs Fund. These treatments are now available for the treatment of all NHS patients.
The Innovative Medicines Fund was launched in June 2022 and will allow patients to benefit from early access to the most promising medicines where there is too much uncertainty for NICE to be able to recommend routine funding. This will further support the rapid introduction of effective new medicines for the benefit of NHS patients.
Mentions:
1: Liz Twist (LAB - Blaydon) As chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad - Speech Link
2: Liz Twist (LAB - Blaydon) rare and inherited conditions. - Speech Link
3: Will Quince (CON - Colchester) that the Government are taking to tackle rare diseases and conditions more broadly. - Speech Link