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Availability of new drugs, before NICE approval

I'm currently on 600mg of Glivec daily and have been for the last couple of years, having become resisitant to Interferon and then 400mg of Glivec, following diagnosis in 2001.

Recently, I have moved house and GP and I am concerened that if I become resistant again and need to access one of the new drugs, I may be refused access before they are NICE approved.

Does anyone have any experience as to whether, where you live, where your GP is or which hospital you are treated at, has the greatest bearing on your access to these drugs, pre NICE approval?

Does anyone have any specific knowledge on which of the PCTs in Nottinghamshire(City,Bassetlaw or County) or Lincolnshire, will fund Nilotinib or Dasatinib?

Many thanks
Chris

I have an appointment with my consultant tomorrow. I have reacted to Glivec so have to change to Dasatanib. My consultant had to do a full business case to the local PCT (East Kent) to see if I could get the drugs - this was about 5 weeks ago and I am hoping that I will get the drugs tomorrow - will let you know!
Karen

Hi Karen

I do hope you get the right decision and would be very interested to hear how you get on.

Very best of luck!
Chris

If you go to the News link on the menu and scroll down the page you will find the following information from the Rarer Cancer Forum. They have produced a booklet (which you can get from free) about how to appeal a negative decision to fund a therapy (in the case of CML dasatinib/nilotinib) by any PCT..
The booklet is written as a guide for your doctor should you have difficulties.

I have copied the info again here but this and other articles about the post code lottery are on the News page.
You can also find a list of PCT's and their performance regarding access to therapy from the rarer cancers forum site...
..... here

See also 'NHS patients access to medicines' posted under newswire section on right.

Hope this is helpful,

Sandy

Applying for NHS Exceptional Funding for Treatment -
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written by Peter Telford

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This 32-page booklet was written by a barrister, Peter Telford. It was launched at
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The booklet is designed to guide consultants whose National Health Service (NHS) patients need
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Hello there

It got approved! I asked this morning how many others were on it in our area. I am the first for my consultant, and two of the other consultants have 2 patients each so that is not a high number! I can only get the drugs through the hospital pharmacy as a high street chemist cannot order them
Karen

Hi just collected my first months supply of Dasatinib,I have to wait until monday to have stem cells colected at the Apheresis unit at Kings before I can start them,
Dr Ho at Kings has a good number of patients on Dasatinib,
Michael

Dear Karen,
I am so glad that your consultant was able to get dasatinib approved by your pct.
I hope that NICE will speed up the appraisal of both dasatinib and nilotinib (they are being appraised together) so that both drugs are freely available equaly throughout the UK.

Sandy

Hi Karen

That's fantastic news! Do you have any anecdotal advice, for anyone else who needs to put a case forward to their PCT?

All the best
Chris

Hi Sandy

Thanks for your help on this-some interesting reading!

Having made a few calls to my local PCTs, it seems that where your GP is registered, rather than where you live, or at which hospital you are being treated, determines the PCT to which you apply for funding.

I was also told that Stage of Disease, number and type of previous treatments and potential benefits are also looked at, as well as cost. Age does not come into it.

Within my area, it seems that one PCT (not mine) spends well above the national average on Cancer drugs. I guess that it is therefore probably more likely to support an application for any treatments pre NICE approval, than others that spend less. Although this may not necessarily be the case for Nilotinib or Dasatinib!

Kind regards
Chris

Dear Chris,
Every PCT has its own rules regarding how they veiw 'exeptionality'... they also have different names for the procedure! But it is up to the consultant/patient to prove they fit in to the 'exeptonality' rules. If the consultant words the appeal correctly then you have a good chance of winning the case. Hopefully this will cease to be a problem soon when NICE finally take a decision on both dasatinib and nilotinib. It is stressful enough to have CML without having to fight for access to the right drug.
By the way... the DH says emphatically that no PCT should base a decision to refuse funding on cost!
Sandy

I have to be honest and say I did nothing!
My consultant clearly thought it was the best drug and did the business case. I know he had spoken to others and to the Glivec drug rep who agreed that I had to change drugs (after reaction to Glivec left me with jaundice).
Not sure if age is a contributing factor (I am 35) or if you have only had the disease a short time (diagnosed in March this year) so can't really give any advice. Will let you know how I get on with it though

k

Hi Karen

Thanks for the feedback. Every bit of experience could be useful to one of us in a similar situation right now, or in the future!

I hope it all works out with your new treatment.

Keep in touch.
Chris

Hi Sandy

Thanks for the additional advice;I will definitely use it, if and when I need to change treatments in the future.

Do you know what the latest thinking is, regarding a decision from NICE?

Best regards
Chris

Hi, I am on Glivec on the Spirit trial. I have been told that dasatinib will help me if glivec fails, + I was reassured about this . Then received a letter that said NICE wouldn't recommend this because it wasn't cost effective.. but a decision should be made April or May 10.
But if you are willing to move to Scotland you can get it there. !!
I think this is totally unfair. We have lived in Midlands for 30 years, are we to try + make a new life , friends ect. at 60 + years in a place we have never been to ? I suppose we have little choice. if push comes to shove.
I have written to MP's , NICE , ect. + had very little satisfaction. I am getting fed up will banging my head on a brick wall instead of leading my life. If anyone can tell me who else to protest to that would be great. I feel no one is listening . What is the point of developing these drugs if they don't let the people that need them have them ?. And we are talking LIFE SAVING !! Climbing down from soap box !, I would be in speakers corner if I was still within reach of London. ....... Keep Faith. .... DPJ