Batten Disease: Access to Drugs

Commons Chamber
Batten Disease - Mon 22 Jul 2019
Department of Health and Social Care

Mentions:
1: Seema Kennedy (CON - South Ribble) In 2013, NICE introduced its highly specialised technologies programme, which supports access to drugs - Speech Link
2: Seema Kennedy (CON - South Ribble) access to Brineura, I pay tribute to my hon. - Speech Link
3: Andrew Griffiths (CON - Burton) access to drugs in different countries, but this drug is available in 20 countries, including Wales. - Speech Link
4: Marie Rimmer (LAB - St Helens South and Whiston) secure the funding of the drug Brineura to help sufferers of Batten disease such as my young constituent - Speech Link

Westminster Hall
NHS and Future Trade Deals - Mon 22 Jul 2019
Department for International Trade

Mentions:
1: Liz Twist (LAB - Blaydon) I have just come from the main Chamber, where we were talking about access to medicine and treatments - Speech Link
2: Stewart Hosie (SNP - Dundee East) Not only would we potentially lose access to those markets, but we do not have the means to replicate - Speech Link
3: Judith Cummins (LAB - Bradford South) drugs in significant volumes and therefore uses its bargaining power to set the price at the lowest - Speech Link

Commons Chamber
Oral Answers to Questions - Tue 18 Jun 2019
Department of Health and Social Care

Mentions:
1: Caroline Dinenage (CON - Gosport) training through Skills for Care and given councils access to a lot more funding to help support them - Speech Link
2: James Cartlidge (CON - South Suffolk) What steps he is taking to increase NHS access to new technology. - Speech Link
3: Matt Hancock (IND - West Suffolk) To increase the access to new technology across the NHS, we have expanded the accelerated access collaborative - Speech Link
4: Matt Hancock (IND - West Suffolk) Gentleman is right that we need to ensure that access to mental health services improves. - Speech Link
5: Caroline Dinenage (CON - Gosport) We are committed to ensuring that everyone has access to the care and support we need. - Speech Link

Westminster Hall
Cystic Fibrosis Drugs: Orkambi - Mon 10 Jun 2019
Department of Health and Social Care

Mentions:
1: Paul Scully (CON - Sutton and Cheam) I beg to move,That this House has considered e-petition 231602 relating to access to Orkambi and other - Speech Link
2: Jeff Smith (LAB - Manchester, Withington) overturn the monopoly and access to drugs through clinical trials. - Speech Link
3: Marion Fellows (SNP - Motherwell and Wishaw) believes that the UK Government need to do more to facilitate interim access to Orkambi and other drugs - Speech Link
4: Sharon Hodgson (LAB - Washington and Sunderland West) I hoped, as others did, that by now cystic fibrosis patients would have access to the drugs that they - Speech Link
5: Sharon Hodgson (LAB - Washington and Sunderland West) , and ensures that they have access to the life-saving drugs they need and deserve. - Speech Link

Arms Length Body Publication (Published)
NICE

Apr. 30 2019

Found: Their bravery has had a huge contribution to the global battle against Batten disease.

Arms Length Body Publication (Published)
NICE

Apr. 30 2019

Found: It disadvantages rare disease patients and their access to orphan drugs because, by defi nition, the

Commons Chamber
Oral Answers to Questions - Tue 26 Mar 2019
Department of Health and Social Care

Mentions:
1: Matt Hancock (IND - West Suffolk) We have made a significant offer to the pharmaceutical company, Vertex, to allow these drugs to be provided - Speech Link
2: Helen Whately (CON - Faversham and Mid Kent) What steps he is taking to improve access to GPs. - Speech Link
3: Matt Hancock (IND - West Suffolk) part of the NHS long-term plan, to ensure that we can get the best possible access to GPs. - Speech Link
4: Gavin Newlands (SNP - Paisley and Renfrewshire North) What work is the Department planning to undertake to maintain patient access to this highly effective - Speech Link
5: Lloyd Russell-Moyle (LAB - Brighton, Kemptown) From April onwards, disabled people will have to go to their GP to access these services, which will - Speech Link

Commons Chamber
NICE Appraisals: Rare Diseases Treatments - Thu 21 Mar 2019
Department of Health and Social Care

Mentions:
1: Stephen Twigg (LAB - Liverpool, West Derby) increase capacity and resources to offer access to clinical trials of new disease-modifying agents. - Speech Link
2: Sharon Hodgson (LAB - Washington and Sunderland West) We have heard of their determination to continue fighting to access those drugs, whether by writing to - Speech Link

Arms Length Body Publication (Published)
NICE

Feb. 22 2019

Source Page: Cerliponase alfa for treating neuronal ceroid lipofuscinosis type 2
Publication Type: Final evaluation determination
Document: Committee papers (PDF 7.16 MB) (webpage)

Found: For this to happen health professionals need to be educated on the signs and symptoms of Batten disease

Arms Length Body Publication (Regulatory)
NHS England

Apr. 01 2019

Found: We discove r We believe it is our duty to find and develop new treatments for heart and lung disease