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1001918

registered interest
date	05/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether officials in his Department have had discussions with the Scottish Government on the (a) Patient and Clinician Engagement system, (b) its effect on approval rates for new rare disease medicines in Scotland and (c) potential lessons from that system for NHS England.
tabling member constituency	Bury North
tabling member printed	James Frith
uin	188233
answer	answer is ministerial correction date of answer 14/11/2018 answer text <p>Officials have had no such discussions. Health is a devolved matter and the availability of medicines for the treatment of rare diseases in Scotland is an issue for the Scottish Government.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 14/11/2018 11:21:33 answering member 4067 label Biography information for Steve Brine
tabling member	4637 label Biography information for James Frith

1001919

registered interest
date	05/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, with reference to paragraph 4.12 the UK Rare Diseases Strategy, what assessment his Department has made of whether the National Institute for Health and Care Excellence’s Single Technology Appraisal Programme meets the ambition of suitability for assessing rare disease treatments.
tabling member constituency	Bury North
tabling member printed	James Frith
uin	188234
answer	answer is ministerial correction date of answer 12/11/2018 answer text <p>Where a company is willing to set a fair price for a drug, the National Institute for Health and Care Excellence (NICE) technology appraisal process has been proven to be suitable for the assessment of drugs for rare diseases. NICE has been able to recommend a number of drugs for patients with rare diseases through its technology appraisal programme; recent examples include dinutuximab beta for neuroblastoma and daratumumab for relapsed and refractory multiple myeloma.</p><p> </p><p>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 (2013-2020). The Government is committed to implementing the Strategy’s commitments and has, in January 2018, published Implementation Plans setting out its actions for England.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 12/11/2018 17:23:30 answering member 4067 label Biography information for Steve Brine
tabling member	4637 label Biography information for James Frith

993832

registered interest
date	23/10/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	2
legislature	25277 pref label House of Lords
question text	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.
tabling member printed	Viscount Waverley
uin	HL10965
answer	answer is ministerial correction date of answer 06/11/2018 answer text <p>With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published <em>The UK Strategy for Rare Diseases</em> 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 <em>The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England</em> and NHS England’s <em>Implementation Plan for the UK Strategy for Rare Diseases</em> are attached.</p><p>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.</p><p>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.</p> answering member printed Lord O'Shaughnessy attachment 1 file name UK_Strategy_for_Rare_Diseases.pdf title The UK Strategy for Rare Diseases 2 file name UK_strategy_for_rare_diseases_-_implementation_plan_for_England.pdf title UK Strategy for Rare Diseases Implementation Plan 3 file name NHSE implementation-plan-uk-strategy-for-rare-diseases.pdf title NHS England Rare Diseases Implementation Plan grouped question UIN HL10966 HL10967 HL10968 question first answered 06/11/2018 13:06:10 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	1744 label Biography information for Viscount Waverley

993833

registered interest
date	23/10/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	2
legislature	25277 pref label House of Lords
question text	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.
tabling member printed	Viscount Waverley
uin	HL10966
answer	answer is ministerial correction date of answer 06/11/2018 answer text <p>With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published <em>The UK Strategy for Rare Diseases</em> 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 <em>The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England</em> and NHS England’s <em>Implementation Plan for the UK Strategy for Rare Diseases</em> are attached.</p><p>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.</p><p>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.</p> answering member printed Lord O'Shaughnessy attachment 1 file name UK_Strategy_for_Rare_Diseases.pdf title The UK Strategy for Rare Diseases 2 file name UK_strategy_for_rare_diseases_-_implementation_plan_for_England.pdf title UK Strategy for Rare Diseases Implementation Plan 3 file name NHSE implementation-plan-uk-strategy-for-rare-diseases.pdf title NHS England Rare Diseases Implementation Plan grouped question UIN HL10965 HL10967 HL10968 question first answered 06/11/2018 13:06:10 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	1744 label Biography information for Viscount Waverley

993834

registered interest
date	23/10/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	2
legislature	25277 pref label House of Lords
question text	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.
tabling member printed	Viscount Waverley
uin	HL10967
answer	answer is ministerial correction date of answer 06/11/2018 answer text <p>With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published <em>The UK Strategy for Rare Diseases</em> 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 <em>The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England</em> and NHS England’s <em>Implementation Plan for the UK Strategy for Rare Diseases</em> are attached.</p><p>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.</p><p>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.</p> answering member printed Lord O'Shaughnessy attachment 1 file name UK_Strategy_for_Rare_Diseases.pdf title The UK Strategy for Rare Diseases 2 file name UK_strategy_for_rare_diseases_-_implementation_plan_for_England.pdf title UK Strategy for Rare Diseases Implementation Plan 3 file name NHSE implementation-plan-uk-strategy-for-rare-diseases.pdf title NHS England Rare Diseases Implementation Plan grouped question UIN HL10965 HL10966 HL10968 question first answered 06/11/2018 13:06:10 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	1744 label Biography information for Viscount Waverley

993835

registered interest
date	23/10/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	2
legislature	25277 pref label House of Lords
question text	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.
tabling member printed	Viscount Waverley
uin	HL10968
answer	answer is ministerial correction date of answer 06/11/2018 answer text <p>With the aim of improving the lives of all those affected by a rare disease, the United Kingdom Government published <em>The UK Strategy for Rare Diseases</em> 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 <em>The UK Strategy for Rare Diseases: Rare Diseases implementation plan for England</em> and NHS England’s <em>Implementation Plan for the UK Strategy for Rare Diseases</em> are attached.</p><p>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.</p><p>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.</p> answering member printed Lord O'Shaughnessy attachment 1 file name UK_Strategy_for_Rare_Diseases.pdf title The UK Strategy for Rare Diseases 2 file name UK_strategy_for_rare_diseases_-_implementation_plan_for_England.pdf title UK Strategy for Rare Diseases Implementation Plan 3 file name NHSE implementation-plan-uk-strategy-for-rare-diseases.pdf title NHS England Rare Diseases Implementation Plan grouped question UIN HL10965 HL10966 HL10967 question first answered 06/11/2018 13:06:10 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	1744 label Biography information for Viscount Waverley

972523

registered interest
date	12/09/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether his Department has plans to review NICE’s criteria for reviewing new medicines so that it ensures appropriate access to treatments by people with rare diseases.
tabling member constituency	Bury South
tabling member printed	Mr Ivan Lewis
uin	173984
answer	answer is ministerial correction date of answer 10/10/2018 answer text <p>The Department has no plans to review the National Institute for Health and Care Excellence’s (NICE) criteria for assessing medicines. NICE is an independent body and is responsible for the methods and processes it uses in the development of its guidance. NICE’s methods and processes for the assessment of drugs have been carefully developed over time through extensive engagement with stakeholders and are internationally respected. NICE continues to keep its procedures under periodic review to ensure that they remain fit for purpose.</p><p> </p><p>All topics, including drugs for rare diseases, are considered through a rigorous topic selection process before formal referral to NICE to ensure that NICE guidance is appropriate and will add value. NICE assesses most significant new drugs through its technology appraisal programme and has been able to recommend a number of drugs licenced for the treatment of rare diseases for routine use on the National Health Service.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 10/10/2018 12:42:22 answering member 4067 label Biography information for Steve Brine
tabling member	441 label Biography information for Mr Ivan Lewis

964513

registered interest
date	03/09/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the sustainability of the NICE process for rare disease medicines that do not meet the Highly Specialised Technology criteria.
tabling member constituency	Alyn and Deeside
tabling member printed	Mark Tami
uin	169119
answer	answer is ministerial correction date of answer 11/09/2018 answer text <p>The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based guidance for the National Health Service on whether drugs and other treatments represent an effective use of NHS resources.</p><p>NICE’s methods and processes for the assessment of drugs have been carefully developed over time and are internationally respected. NICE continues to keep its procedures under periodic review to ensure that they remain fit for purpose.</p><p>All topics, including drugs for rare diseases, are considered through a rigorous topic selection process before formal referral to NICE to ensure that NICE guidance is appropriate and will add value. NICE assesses most significant new drugs through its technology appraisal programme and has been able to recommend a number of drugs licenced for the treatment of rare diseases for routine use on the NHS.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 11/09/2018 14:31:54 answering member 4067 label Biography information for Steve Brine
tabling member	1383 label Biography information for Mark Tami

964514

registered interest
date	03/09/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps the Government has taken to enable access agreements for rare disease medicines that do not meet the Highly Specialised Technology criteria.
tabling member constituency	Alyn and Deeside
tabling member printed	Mark Tami
uin	169120
answer	answer is ministerial correction date of answer 11/09/2018 answer text <p>Drug companies have been able to propose patient access schemes, and more recently other commercial arrangements, for products undergoing the National Institute for Health and Care Excellence (NICE) appraisal for a number of years. Such arrangements have enabled NICE to recommend many products for use on the National Health Service that it may not otherwise have been able to recommend.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 11/09/2018 14:27:21 answering member 4067 label Biography information for Steve Brine
tabling member	1383 label Biography information for Mark Tami

931178

registered interest
date	25/06/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Rare Diseases: Drugs
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 31 May 2018 to Question 146854 on Rare Diseases: Drugs, whether NHS England can be mandated by NICE to enter discussions with manufacturers on managed access agreements as part of an evaluation of highly specialised technology; and what criteria are used by NICE to decide when to initiate discussions between NHS England and manufacturers on managed access arrangements as part of an evaluation of a highly specialised technology.
tabling member constituency	Strangford
tabling member printed	Jim Shannon
uin	157166
answer	answer is ministerial correction date of answer 03/07/2018 answer text <p>The National Institute for Health and Care Excellence (NICE) has no powers to require NHS England to enter discussions with manufacturers, and there are no specific criteria used to decide when to initiate discussions with a manufacturer.</p><p> </p><p>However, a managed access arrangement will be considered a potential option when the highly specialised technology evaluation committee considers that such an arrangement would have the potential to resolve the uncertainties and manage the risk for a particular topic. For example, when evidence collection could resolve a clinical uncertainty or when clear starting and stopping criteria would manage financial or economic risks.</p><p> </p><p>In circumstances where a managed access agreement is a potential option, NICE will ask NHS England, companies and other stakeholders to enter into discussions on managed access agreements.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 03/07/2018 15:16:03 answering member 4067 label Biography information for Steve Brine
tabling member	4131 label Biography information for Jim Shannon