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CML on BBC Radio 4 'File on 4 '

Here is a link to last night's File on 4 programme http://www.bbc.co.uk/programmes/b07dlxxt which featured Russell Cooper who was what NICE call a 'patient expert' at the recent NICE committee meeting for bosutinib which I posted about a few days ago.

Hammersmith Hospital's Professor Jane Apperley was also interviewed. She gave a very elegant and concise description of the problems confronting clinicians in prescribing TKIs for CML patients in England.

The programme also included a re-enactment of a conversation the reporter had with a clinician who wanted to remain anonymous which described both the perversity and waste of resource built into a system where, in order to obtain access to a CML TKI most appropriate for a patient, another CML TKI known to be extremely inappropriate for this particular patient had to be be used with disastrous results. The programme is worth listening to just for this section.

Something that was also touched on more generally was the question of affordability which of course highlights another feature much more particular to TKIs for CML than it does for most other drugs in the Cancer Drugs Fund

This is something I'll post something on over the next few days. In the meantime I recommend you listen to the programme. 

 

    

 

 

 

I've listened to the programme again over the weekend and had more time to reflect on some of the content.

Something that stunned me on a second listening was the claim made by NHS England in their correspondence with the programme's reporter, Phil Kemp, that the Cancer Drugs Fund (CDF) had not received an application based on resistance to either of the two drugs (imatinib and nilotinib) recommended by NICE for the treatment of CML.

Added to that was the assertion made by Jonathan Fielden, the NHS England Director of Specialised Commissioning (the CDF falls within Specialised Commissioning), that the processing work that needs to be carried out for a drug to be admitted into the list of drugs that are in the CDF must only focus on areas that NICE has not covered. He also said the various parties including clinicians involved in establishing the eligibility criteria that any application to the Fund must meet, focused on making these criteria as precise as possible including ensuring they did not overlap with similar defining activity covered by the NICE process.

The reason I was so surprised by the claim that no applications had been received is that it is not correct. There were four CML related applications made simultaneously to the CDF in 2014, three of which were explicitly resistance related with two of these specifically referring to resistance to nilotinib, a NICE recommended drug. The applications were precise in their wording and clearly, with one exception not amongst the three I've referred to, avoided any overlap with the NICE recommendation process. 

The applications were considered by the panel that, amongst other activity, processes applications made to be included on the list of drugs (and the conditions they are being used to treat) that form what is called The National CDF List. The panel decided that they wanted four issues they considered pertinent to the applications to be investigated by the relevant NHS England advisory body whose designated concern is chemotherapy (TKIs are technically chemotherapy agents although their use and activity is very different from traditional chemotherapy). The decision to initiate this action plan, as the panel described it, resulted in the panel also deciding that they would not undertake the established assessment procedure that would produce the score total that would result in inclusion on (or exclusion from) the National List.

Once the panel received the results of the investigation of the four issues they stated they would review the four applications again presumably because they would have all the evidence that would would allow them to make a better quality decision. All this was published as what's called a CDF Decision Summary in July 2014.

In September last year we asked for an update on progress made in investigating the four issues and we were assured it would be taken up. Nearly six months later, in February this year, we made the same request and in response were informed by the person we initially contacted that we should re-direct our query to two CDF panel members. We immediately emailed them and to date have received no reply.

The File on 4 programme referred at some point to the frustration felt by the specialist clinicians having to treat the patients they care for when operating in an environment where the rules governing what TKIs they can and cannot use produce perverse decision making that can result in individual patients becoming more difficult to treat than is necessary. We share that frustration, the endless delay in the investigations concluding and the mind boggling illogicality of the situation.

We remain hopeful that the Rapid Reconsideration of dasatinib, bosutinib and ponatinib will result, over the next year to eighteen months, in a transformed environment where the clinicians can fully exercise their expertise and patients access the treatment most appropriate for their profile.