Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what guidance is provided by NHS Trusts about making the drug Spinraza available through the NHS to patients with spinal muscular atrophy (SMA).
Answered by Lord O'Shaughnessy
The National Institute for Health and Care Excellence (NICE) is currently developing technology appraisal guidance for the National Health Service on the use of nusinersen (Spinraza) for the treatment of spinal muscular atrophy (SMA).
NHS England has published an Interim Policy Statement Urgent Clinical Commissioning Policy Statement: Nusinersen for genetically confirmed Spinal Muscular Atrophy (SMA) type 1 for eligible patients under the Expanded Access Programme (EAP) determining the circumstances in which patients will be supported to access nusinersen through the EAP scheme sponsored by Biogen, the manufacturer of nusinersen. A copy is attached. The policy statement enables patients with type 1 SMA to access nusinersen in advance of NICE’s guidance.
In the absence of final guidance from NICE, clinicians can apply to NHS England for funding in exceptional cases through the individual funding request process.
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 making financial resources available to patients with spinal muscular atrophy (SMA) to obtain medication not approved by NICE.
Answered by Lord O'Shaughnessy
The National Institute for Health and Care Excellence (NICE) is currently developing technology appraisal guidance for the National Health Service on the use of nusinersen (Spinraza) for the treatment of spinal muscular atrophy (SMA).
NHS England has published an Interim Policy Statement Urgent Clinical Commissioning Policy Statement: Nusinersen for genetically confirmed Spinal Muscular Atrophy (SMA) type 1 for eligible patients under the Expanded Access Programme (EAP) determining the circumstances in which patients will be supported to access nusinersen through the EAP scheme sponsored by Biogen, the manufacturer of nusinersen. A copy is attached. The policy statement enables patients with type 1 SMA to access nusinersen in advance of NICE’s guidance.
In the absence of final guidance from NICE, clinicians can apply to NHS England for funding in exceptional cases through the individual funding request process.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what guidance is provided to NHS Trusts about the use of medication not approved by NICE to treat spinal muscular atrophy (SMA).
Answered by Lord O'Shaughnessy
The National Institute for Health and Care Excellence (NICE) is currently developing technology appraisal guidance for the National Health Service on the use of nusinersen (Spinraza) for the treatment of spinal muscular atrophy (SMA).
NHS England has published an Interim Policy Statement Urgent Clinical Commissioning Policy Statement: Nusinersen for genetically confirmed Spinal Muscular Atrophy (SMA) type 1 for eligible patients under the Expanded Access Programme (EAP) determining the circumstances in which patients will be supported to access nusinersen through the EAP scheme sponsored by Biogen, the manufacturer of nusinersen. A copy is attached. The policy statement enables patients with type 1 SMA to access nusinersen in advance of NICE’s guidance.
In the absence of final guidance from NICE, clinicians can apply to NHS England for funding in exceptional cases through the individual funding request process.
Asked by: Viscount Waverley (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty’s Government whether, in the event of the UK leaving the EU, UK citizens living in EU member states will retain all of their rights to medical treatment in the EU under the existing terms and conditions based on their contributions to the UK NHS social security system.
Answered by Lord Prior of Brampton
As set out in the Government’s White Paper: ‘The process for withdrawing from the European Union’, published on 29 February and attached, the withdrawal process is unprecedented. No country has ever used Article 50 – it is untested. There is a great deal of uncertainty about how it would work. United Kingdom citizens currently enjoy a range of specific rights to live, to work and access to pensions, health care and public services that are only guaranteed because of European Union law. If the UK voted to leave the EU, the Government would do all it could to secure a positive outcome for the country, but there would be no requirement under EU law for these rights to be maintained. Should an agreement be reached to maintain these rights, the expectation must be that this would have to be reciprocated for EU citizens in the UK.