Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what assessment they have made of the sustainability of the NICE appraisal process for rare disease medicines that do not meet the highly specialised technology criteria.
Answered by Lord O'Shaughnessy
With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published The UK Strategy for Rare Diseases in 2013, a high-level framework containing 51 commitments which sets out a seven-year strategic vision from 2013-2020. A copy of the Strategy is attached. The Government is committed to implementing the Strategy’s commitments and has, in January 2018, published two implementation plans setting out its actions for England. Copies of the Department’s The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England and NHS England’s Implementation Plan for the UK Strategy for Rare Diseases are attached.
The Government has not made any assessment of differences in access to medicines for the treatment of rare diseases or on the available number of treatments between England, the devolved administrations and economically similar countries in Europe.
With regard to the Government’s assessment of the sustainability of the National Institute for Health and Care Excellence’s (NICE) appraisal process for rare disease medicines that do not meet the highly specialised technology criteria, patients with rare diseases in England benefit from the same NHS Constitution right to clinically and cost-effective medicines as patients with more common conditions. NICE has recommended a number of medicines for the treatment of rare diseases through its technology appraisal and highly specialised technology evaluation programmes which are now routinely available to National Health Service patients in line with NICE’s recommendations.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what assessment they have made of how many treatments for rare diseases are available in Scotland that are unavailable in England.
Answered by Lord O'Shaughnessy
With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published The UK Strategy for Rare Diseases in 2013, a high-level framework containing 51 commitments which sets out a seven-year strategic vision from 2013-2020. A copy of the Strategy is attached. The Government is committed to implementing the Strategy’s commitments and has, in January 2018, published two implementation plans setting out its actions for England. Copies of the Department’s The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England and NHS England’s Implementation Plan for the UK Strategy for Rare Diseases are attached.
The Government has not made any assessment of differences in access to medicines for the treatment of rare diseases or on the available number of treatments between England, the devolved administrations and economically similar countries in Europe.
With regard to the Government’s assessment of the sustainability of the National Institute for Health and Care Excellence’s (NICE) appraisal process for rare disease medicines that do not meet the highly specialised technology criteria, patients with rare diseases in England benefit from the same NHS Constitution right to clinically and cost-effective medicines as patients with more common conditions. NICE has recommended a number of medicines for the treatment of rare diseases through its technology appraisal and highly specialised technology evaluation programmes which are now routinely available to National Health Service patients in line with NICE’s recommendations.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what steps they are taking to reduce any disparity in access to rare disease medicines in England compared with economically similar countries in Europe.
Answered by Lord O'Shaughnessy
With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published The UK Strategy for Rare Diseases in 2013, a high-level framework containing 51 commitments which sets out a seven-year strategic vision from 2013-2020. A copy of the Strategy is attached. The Government is committed to implementing the Strategy’s commitments and has, in January 2018, published two implementation plans setting out its actions for England. Copies of the Department’s The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England and NHS England’s Implementation Plan for the UK Strategy for Rare Diseases are attached.
The Government has not made any assessment of differences in access to medicines for the treatment of rare diseases or on the available number of treatments between England, the devolved administrations and economically similar countries in Europe.
With regard to the Government’s assessment of the sustainability of the National Institute for Health and Care Excellence’s (NICE) appraisal process for rare disease medicines that do not meet the highly specialised technology criteria, patients with rare diseases in England benefit from the same NHS Constitution right to clinically and cost-effective medicines as patients with more common conditions. NICE has recommended a number of medicines for the treatment of rare diseases through its technology appraisal and highly specialised technology evaluation programmes which are now routinely available to National Health Service patients in line with NICE’s recommendations.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what steps they are taking to reduce any disparity in access to rare disease medicines between England, Wales, Scotland and Northern Ireland.
Answered by Lord O'Shaughnessy
With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published The UK Strategy for Rare Diseases in 2013, a high-level framework containing 51 commitments which sets out a seven-year strategic vision from 2013-2020. A copy of the Strategy is attached. The Government is committed to implementing the Strategy’s commitments and has, in January 2018, published two implementation plans setting out its actions for England. Copies of the Department’s The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England and NHS England’s Implementation Plan for the UK Strategy for Rare Diseases are attached.
The Government has not made any assessment of differences in access to medicines for the treatment of rare diseases or on the available number of treatments between England, the devolved administrations and economically similar countries in Europe.
With regard to the Government’s assessment of the sustainability of the National Institute for Health and Care Excellence’s (NICE) appraisal process for rare disease medicines that do not meet the highly specialised technology criteria, patients with rare diseases in England benefit from the same NHS Constitution right to clinically and cost-effective medicines as patients with more common conditions. NICE has recommended a number of medicines for the treatment of rare diseases through its technology appraisal and highly specialised technology evaluation programmes which are now routinely available to National Health Service patients in line with NICE’s recommendations.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what steps they are taking to ensure access to rare disease medicines is not delayed after Brexit.
Answered by Lord O'Shaughnessy
The Government is committed to the safe and effective regulation of medicines in the United Kingdom; ensuring patients and the public have fast access to new, innovative medicines, including medicines for rare diseases.
The future regulatory system for medicines is subject to negotiation. The White Paper proposal sets out a proposed UK-European Union free trade area for goods, to ensure continued frictionless access at the border to each other’s markets, underpinned by an upfront commitment to a common rulebook on goods and a Facilitated Customs Arrangement to avoid customs checks and controls at our borders. A copy of the White Paper The Future Relationship Between the United Kingdom and the European Union is attached.
Furthermore, UK and EU negotiating teams have already agreed a time-limited implementation period, that will maintain access to each other’s markets on current terms - providing certainty for businesses across the EU and UK and time to prepare for the future.
On 22 August the Government also set out its plans for medicines regulation in the unlikely event of no deal, through a technical notice. In the unlikely event of a no-deal scenario, the Medicines and Healthcare products and Regulatory Agency would be a stand-alone medicines regulator, taking any decisions and carrying out any functions which are currently taken or carried out at EU-level.
The Government also launched a consultation on medicines regulation for the event of no deal; this closes on 1 November 2018.
Whatever the exit scenario, we will continue to ensure that UK patients are able to access the best and most innovative medicines and medical devices and that their safety is protected.