National service established to treat aHUS
27 May 2016
Under the plans, Newcastle Upon Tyne Hospitals NHS Foundation Trust and Newcastle University will oversee the treatment of NHS patients with aHUS
National Audit Office publishes report on specialised services
20 May 2016
A report by the organisation claims a number of factors are responsible for the increasing cost of specialised services, including effective but expensive new drugs.
NHS England consults on aHUS services
23 Mar 2016
As part of the service, NHS England have said they will create a register of all people with aHUS in England and develop criteria to inform when patients should start or stop using eculizumab for clinical reasons.
Eculizumab not recommended for routine use in Scotland
18 Feb 2016
The SMC, which advises the NHS in Scotland on which medicines should be routinely used, acknowledged the beneficial effects of eculizumab but concluded that it did not offer value for money due to the medicine’s high cost.
Rare diseases discussed in Parliament
15 Jan 2016
In Parliament last week David Hanson, a Labour MP, said there needed to be more support for patients when they are diagnosed with a rare disease, and for parents when their child receives a diagnosis.
NHS England announces budget increase for specialised services
21 Dec 2015
The specialised services budget will grow from £14.6bn in 2015/16 to £15.7bn in 2016/17, reaching £18.8bn by 2020/21.
NHS England & NICE publish proposals for new Cancer Drugs Fund
7 Dec 2015
The CDF has been subject to widespread criticism after it funds medicines that were previously not recommend by NICE.
NHS England to establish national service for aHUS
5 Nov 2015
The primary aim of the service will be to ensure that patients receive a confirmed diagnosis as quickly as possible so that they can commence treatment with Eculizumab.
Accelerated Access Review initial report published
1 Nov 2015
The Accelerated Access Review (AAR) has published its initial report into policy mechanisms by which access to innovative medicines can made available more quickly to […]