Asked by: Ivan Lewis (Independent - Bury South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what estimate his Department has made of the cost to the public purse of treating people with cystic fibrosis in each of the last five years.
Answered by Steve Brine
No specific estimate has been made, though some data are collected through the NHS Reference Costs data collection, which provides the average unit cost to the NHS of providing defined services to National Health Service patients in England in a given financial year. The following table shows the estimated total cost of treating cystic fibrosis within secondary care in each of the last five years.
Year | Estimated total cost in secondary care (£ million) |
2012-13 | £84.8 |
2013-14 | £102.0 |
2014-15 | £105.6 |
2015-16 | £107.8 |
2016-17 | £105.7 |
Source: NHS Improvement Reference Costs
Note:
For children with cystic fibrosis there are two models for the delivery of care:
- Full care delivered entirely by a specialist cystic fibrosis centre; and
- Shared care delivered by a network cystic fibrosis clinic, which is part of an agreed designated network with a specialist cystic fibrosis centre. The network cystic fibrosis clinic is linked to and led by a specialist cystic fibrosis centre. Named providers for network clinics were collected for the first time in 2012-13.
Asked by: Ivan Lewis (Independent - Bury South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent discussions his Department has had with representatives of cystic fibrosis charities on the availability of Orkambi on the NHS for people with cystic fibrosis.
Answered by Steve Brine
The Parliamentary Under Secretary of State for Health (Lord O’Shaughnessy) met with the Cystic Fibrosis Trust (CFT) on 7 March 2017 following an adjournment debate in December 2016 on “Implications of the Accelerated Access Review (AAR) for Cystic Fibrosis and other Conditions” to discuss Orkambi. A meeting has also been scheduled between the Prime Minister and the Chief Executive of the CFT, David Ramsden, and the hon. Members for Dudley North (Ian Austin) and Hemel Hempstead (Sir Mike Penning), to discuss the availability of Orkambi.
Lord O’Shaughnessy and I wrote to Vertex in April following a Westminster Hall debate, to encourage the company to work with NHS England on a proposal that represents value to the National Health Service and the taxpayer.
Asked by: Ivan Lewis (Independent - Bury South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of NHS England taking a portfolio approach to its evaluation of the cost-effectiveness of cystic fibrosis medicines.
Answered by Steve Brine
The Department has made no assessment. Negotiations between NHS England and Vertex on Orkambi continue, and the final decision on any arrangement lies with NHS England, and not the Government. The Parliamentary Under Secretary of State for Health (Lord O’Shaughnessy) and I wrote to Vertex in April following a Westminster Hall debate to encourage the company to work with NHS England on a proposal that represents value to the National Health Service and the taxpayer.
Asked by: Ivan Lewis (Independent - Bury South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 29 March 2018 to Question 134204, what the timetable is for Public Health England’s Operational Delivery Network Hepatitis C profile tool to be completed; and whether that tool will be made publicly available.
Answered by Steve Brine
All national level surveillance data, including estimates of numbers of people tested, diagnosed and treated, and the burden of advanced liver disease related to hepatitis C are available in the Public Health England (PHE) annual reports: Hepatitis C in England report and Shooting Up: infections among people who inject drugs in the United Kingdom, available at the following link:
PHE is currently finalising a tool which has Operational Delivery Network level estimates of hepatitis C prevalence, diagnoses, treatment and severe hepatitis C virus (HCV)-related liver disease in people who inject drugs. This tool is expected to be published on gov.uk in the coming weeks.
The new tool will replace data the HCV commissioning template which contains data at Drug Action Team level:
Asked by: Ivan Lewis (Independent - Bury South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 29 March 2018 to Question 134204, if he will place copies of the most recent surveillance data on (a) Hepatitis C prevalence in people who inject drugs, (b) the size of that at-risk population, (c) treatment and diagnoses and (d) severe HCV-related liver disease by Operational Delivery Network in the Library.
Answered by Steve Brine
All national level surveillance data, including estimates of numbers of people tested, diagnosed and treated, and the burden of advanced liver disease related to hepatitis C are available in the Public Health England (PHE) annual reports: Hepatitis C in England report and Shooting Up: infections among people who inject drugs in the United Kingdom, available at the following link:
PHE is currently finalising a tool which has Operational Delivery Network level estimates of hepatitis C prevalence, diagnoses, treatment and severe hepatitis C virus (HCV)-related liver disease in people who inject drugs. This tool is expected to be published on gov.uk in the coming weeks.
The new tool will replace data the HCV commissioning template which contains data at Drug Action Team level: