This is an update to let you know that the responses are now in to our Freedom of Information request to SHAs (Strategic Health Authorities), asking how their Cancer Drugs Funds have been used to ensure patients can access CML (Chronic Myeloid Leukaemia) treatments.

It is definitely true that CML patients are in a fairly fortunate position, because NICE recently recommended that both imatinib and nilotinib are a clinical- and cost-effective use of NHS resources – meaning we can exercise some choice, alongside our clinicians, about the treatments we are given. However, following NICE’s decision not to recommend dasatinib as a clinically- and cost-effective treatment for the NHS, the Cancer Drugs Fund is the main avenue from which we can access this alternative to imatinib and nilotinib – either when newly diagnosed, or if we need to change our treatment regime. This FoI project is therefore really important because it can help us assess just how much access patients really have to the treatments they need through the Cancer Drugs Fund – especially important for people like me, who depend on dasatinib to lead ordinary and healthy lives.

Regular readers might recall that we submitted these FoIs at the beginning of August, asking each SHA: how many patients have been diagnosed with CML in their local area; how many applications for dasatinib they have received under the CDF since it began in October 2010; and importantly, how many of these have been successful.

Whilst some SHAs were unable to provide us with specific information about application numbers, those that did had a 100% record of approving the requests – this is heartening to hear but there are some issues.

  • No SHA’s were able to provide details of the number of people who have been diagnosed with Chronic Myeloid Leukaemia.
  • 40% of SHA’s have dasatinib on their approved list, 40% do not operate an approved list and 20% do not have dasatinib on their approved list.
  • In the first year of the CDF (1st April 2011- 31st March 2012) 70% of SHAs received requests for dasatinib. Of these SHA’s 57% funded all requests with the remaining 43% unable to give details due to the small number of patients involved and concerns surrounding patient confidentiality. These could have been rejections to applications for funding.
  • In the second year of the full CDF (1st April- present), 80% of SHAs had so far received applications for dasatinib through the Cancer Drugs Fund. Of these SHA’s 50% funded all applications with the remaining 50% again unable to release this information due to concerns surrounding data protection. Again, these could have been rejections to applications for funding.
  • The results displayed a significant variation in the number of applications for dasatinib that SHAs were receiving. Whilst East Midlands SHA received and approved 46 requests in the first year of the CDF and a further 28 approvals since April this year, nearby East of England SHA received no applications.

So, to ensure that the CDF is being used to its greatest potential to support CML patients access the treatments they need, the results suggest that we need to do three things:

1)      Help make patients aware of the Cancer Drugs Fund (what it is, how it operates etc), so that they can ask their clinician whether a request is appropriate;

2)      Ensure that clinicians have enough confidence in this system to make an application for dasatinib where they think this is the appropriate treatment.

3)      Ensure ALL SHAs have dasatinib on their approved list and ensure transparency AND accuracy in the way they report.

The fact is the North East and the South West both stated that dasatinib is NOT on their approved list, even though they can (and have) still approved an application it shouldn’t be left to chance. The variation in the number of applications is also worrying and perhaps down to misreporting more than anything else. We will aim to get to the bottom of this and put pressure on the NE and SW.

Will keep you posted with news and progress.