Catherine and I arrived nice and early for the meeting today - despite getting lost and ending up in Newcastle ('under Lyme' fortunately and not 'on Tyne') We met up with Kay, her son, daughter-in-law and husband and another kidney cancer patient, Julie, who had come to offer her support. A reporter and photographer from The Sentinel, a local Stoke newspaper, was there too.
The meeting kicked off with an introduction on how the drugs appraisal process works - from the first evidence based decisions to the consultation process. As we all know in the past this entire process has left a lot to be desired, with some drugs waiting for over a year to be appraised and approved - or not. This is how the 'post code lottery' occurs. Without published guidance from NICE it is up to each individual PCT whether they fund these drugs or not. This should all change now however. From now on the appraisal of drugs will start before a licence has been approved so the appalling situation of the post code lottery should never happen again. This doesnt ofcourse help patients like Kay who are left waiting until January because of the callous decision of their PCT.
The question and answer session was fairly lively with quite a few topics being covered but I managed to get my question in which was in reference to the news today about the governments deal with the pharmaceutical companies and the supplementary advice NICE are proposing for end of life drugs. It was a bit early to expect any considered reaction to todays news, after all it had only been released at 9.30am, and as far as end of life drugs are concerned there has to be a period of public consultation and 5 weeks is the bare minimum. The end of life medicines appraisal was covered comprehensively in the board meeting.
Kay made a very moving speech questioning why other patients were taking Sutent and yet she wasnt allowed the chance. There was much sympathy from the board for her but they reiterated that it was a PCT decision at the moment so really our anger should be directed at North Staffs PCT. As far as Sutent is concerned new evidence has been submitted by the pharmaceutical company so this, along with other evidence that has been submitted by both oncologists and patients, gives us good grounds to be hopeful I feel.
Kay and her family left at the end of this session - no nearer to getting the Sutent she so desperately needs.
I stayed on for the board meeting as I really wanted to hear all about the appraisal of the end of life medicines. NICE intend to issue supplementary advice on these drugs which are used in cases of 'rarer cancers' - which must fit the following criteria......
Used for less than 7000 patients per year.
Used for a terminal illness where the life expectancy is, on average, less than 24 months.
Evidence this medicine offers a substantial extension to life compared to current NHS treatment.
The cost of this medicine exceeds the upper range normally considered - £30,000 per year.
Now to me the above describes Sutent perfectly - and most probably the other kidney cancer drugs under review at the moment. This is where I think our best hope lies. NICE are keen to implement this advice - they have only asked for a very short consultation period, ending in January too.
Ofcourse this advice will apply to other cancer drugs too, not just kidney cancer, so it is probably the most important appraisal on the table right now.
I have to admit I left with a grudging respect for NICE - in fact I thanked the chairman personally for his work on the end of life medicines. They are, at last, trying to do the right thing and no longer seem obsessed with the cost of everything. Its a shame it has taken this long. Lives have been lost, literally, waiting for this mess to be sorted out.