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Select Committee
Cystic Fibrosis Trust - written evidence

Written Evidence Mar. 04 2019

Inquiry: Availability of Orkambi on the NHS
Inquiry Status: Closed
Committee: Health and Social Care Committee (Department: Department of Health and Social Care)

Found: more evidence is gathered.[17] This provides a strongly-governed mechanism to pay for promising new drugs

Arms Length Body Publication (Published)
NICE

May. 23 2018

Source Page: Velmanase alfa for treating alpha-mannosidosis
Publication Type: Evaluation consultation: 1
Document: Committee papers (PDF 11.2 MB) (webpage)

Found: Efficacy and safety of enzyme replacement therapy with BMN 110 (elosulfase alfa) for Morquio A syndrome

Arms Length Body Publication (Report)
NHS England

Mar. 07 2018

Source Page: Highly Specialised Services 2017
Document: Highly Specialised Services 2017 (PDF)

Found: canakinumab is highly effective in treating CAPS but it is also one of the world’s most expensive drugs

Arms Length Body Publication (Guidance)
NHS England

Oct. 02 2017

Source Page: Prescribed specialised services manual
Document: Prescribed specialised services manual (PDF)

Found: Specialised Services commissioned drugs Providers are required to regularly review the list of drugs

Arms Length Body Publication (Report)
NHS England

Jul. 21 2016

Source Page: NHS England Annual Report 2015/16
Document: NHS England Annual Report 2015/16 (full document) (PDF)

Found: During 2015/16, we consulted on substantial revisions to the Cancer Drugs Fund (CDF) so that from 2016

Arms Length Body Publication (Published)
NICE

Apr. 18 2016

Source Page: Ataluren for treating Duchenne muscular dystrophy with a nonsense mutation in the dystrophin gene
Publication Type: Expected publication
Document: Committee papers HST3 FED (PDF 4.8 MB) (webpage)

Found: (s) Ataluren (Translarn a) nmDMD Approx. 65 24-26kg: £246 K NICE ID428 Elosulfase (Vimizim ) Morquio

Parliamentary Research
Access to specialist neuromuscular care and treatments - CDP-2015-0130
Dec. 14 2015

Found: be made available subject to a ‚Managed Access Agreement™, such as with Vimizim for the treatment of Morquio

Written Question
Morquio Syndrome: Drugs
Friday 16th October 2015

Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, when he expects NICE to publish its final guidance on the Vimizim treatment.

Answered by George Freeman

The National Institute for Health and Care Excellence currently expects to publish its final guidance on elosulfase alfa (Vimizim) for mucopolysaccharidosis (type IVA) or Morquio Syndrome in December 2015.

Scottish Parliament Debate - Main Chamber
Portfolio Question Time - Wed 23 Sep 2015

Mentions:
1: Fergusson, Alex (None - None) of the Scottish Medicines Consortium following its decision not to reimburse Vimizim for people with Morquio - Speech Link
2: Robison, Shona (SNP - Dundee City East) what was recommended when the SMC adopted its new approach to orphan, ultra-orphan and end-of-life drugs - Speech Link

Written Question
Morquio Syndrome: Drugs
Monday 21st September 2015

Asked by: Greg Mulholland (Liberal Democrat - Leeds North West)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps he is taking to ensure that NHS England funds homecare costs for patients currently in receipt of the Vimizim drug from BioMarin.

Answered by George Freeman

NHS England can confirm that it does and will continue to reimburse costs incurred by National Health Service trusts for providing homecare for patients currently in receipt of Vimizim.

NHS England remains committed to supporting any additional costs associated with the delivery of Vimizim to individuals who are continuing treatment following on from the clinical trial.

This message was communicated in a letter from the Director of Specialised Commissioning, Richard Jeavons, to the Chief Executive of the Society for Mucopolysaccharide Diseases (The MPS Society), Christine Lavery, on 17 August.