I have written a letter to my MP and have uploaded it as a template on this site so that those of you who want to write to your own MP in support of the proposed NICE selection of both Dasatinib and Nilotinib as topic for appraisal.
it is important that we continue help Glivec resistant CML patients in this way.
you can find your MP by clicking on this link
....here
I have also written to the NICE topic selection project manager on behalf of CML support.
Sandy
Many thanks Sandy for the preparation of the template letter and the helpful " who is your MP" link!. Letter sent today to my MP. I'm currently on Glivec (400mg) and doing ok so far (awaiting 6 month PCR tests - due soon), so hope Glivec will do the trick, but it would be great to know that other options are available across whole of UK. Andy
hi Andy,
i am glad you found the template and link helpful and would like to thank you for making the effort and contacting your MP. the more of us that do this the more likely our voice will be heard.
i have written to Dr. Ian Gibson, Chair of the All Party Parliamentary Group on Cancer see their website
.....here
and have posted a copy of the letter in the same box as the template letters so all of you know what is going on and are aware of some of the work that we are doing.
i am in the process of writing to Alan Johnson sec. of state for Health. i hope to have this letter finished by tomorrow and will post a copy of that on the site too.
it is important that we all work together to try to secure NHS funding for the new inhibitors as this will ensure fair access for cml patients across Enland and Wales (Scottish patients already have NHS funding to Dasatinib should they show resistance or intolerance to Glivec).
we do know that there are at least 3 very resistant PCT's/NHS trusts accross the UK... ironically they are not resistant to Glivec but are resistant to any other inhibitor!
one of the worst regions is in the north east. i have heard that one patient died because access to Dasatinib was refused, and that another (who is Glivec resistant and does not respond to Nilotinib) has been refused access to Dasatinib.
another patient...see Paul's update about his wife above..... has been forced to have a transplant, which thankfully she is responding to, because this region's trust/PCT refuses to fund Dasatinib.
there is no sound financial basis for these sorts of decisions. the Glivec resistant group of patients represents a very small percentage of the UK CML population and so their treatment will not be of any significance to the overall budget.
clinicians can do very little under these circumstances. so it is up to us (and the individual patients themselves) to fight for fair access to drugs in all regions of the UK.
as a group we must lobby for a NICE appraisal for both of these newer drugs. this will ensure that all possible options are available for cml patients and lives will be saved. we cannot afford to leave our lives (and our families future) in the hands of local healthcare trusts/PCT's.
we cannot leave clinical decisions to non-CML experts that sit on such panels etc. although they may well be healthcare professionals/social workers/GP's/accountants etc. etc. they are not qualified to make clincal decisions about complex diseases like CML and an individual's possible response to any given therapy.
i hope that more people take the time to write to their local MP so that we can make sure that lives are not lost and CML patients and their families do not suffer unecessarily.
Sandy
Copied the template - added a few comments myself and emailed it to my MP.
It needs as many of us as possible, to put the pressure where necessary. None of us know if and when we will need these new drugs. Last time I wrote to Tony Blair. Might write to Gordon Brown this time.
Good stuff Sandy et al.
Hi Dennis, thanks for helping and yes, i agree with you that we should all be mindful of the fact that any one of us might be in the position of needing either Dasatinib or Nilotinib and finding ourselves within a PCT that refuses funding.
i have written a letter to Alan Johnson the secretary of state for Health, which i will post today.
i am not sure that letters to the prime minister would be of any added value as the Health ministers are the ones with the power in this situation. a letter to the ministers - see below- from individual patients would be a good idea.
Secretary of State- Rt Hon Alan Johnson MP
Minister of State (Health Services)- Mr Ben Bradshaw MP
Parliamentary Under-Secretary (Health Services)- Ann Keen MP
Department of Health
Richmond House
79 Whitehall
London SW1A 2NS
Website: http://www.dh.gov.uk
Sandy ;o)
Sandy - doing letter to Keith Simpson my local MP tonight and will also write to health ministers - Ian Gibson is local to me too so will also include him.
Is there anything else we need to do? I know when we were getting Glivec approved we had a petition and a number of us got media coverage for the campaign which helped with signatures.
Do we need to do the same again or do you think the MPs letters will be sufficient?
Am more than happy to help in any way that I am needed.
Thanks
Lorraine Rollo
As someone who lives in the North East and is now proving resistant to most drugs for my CML, I urge people to write to their MP's about this using the excellent template.
I'm unable to get Dasatinib in this area as my PCT will not fund it. This leaves me with the awful choice of having to have a bone marrow transplant or fight like crazy for the drug. I'm currently challenging the PCT on their stance for not funding the drug and the blatant use of 'postcode prescribtion' which is taking place. Afterall, it is availabe in a lot of areas. It would appear that the North East is just digging it's heels in about it.
I would feel a little better knowing that more people are doing what they can and trying to get this available nationally so it can be used by those people who really need it and are being denied it.
Many thanks
Andy
Hi Andy we went down the same rd as you re- dissatinib and after being dragged down with decision after decision we both pretty much agreed that my wife Sharon would go for BMT and 60 days ish later she is feeling marvelous. I agree you should fight for what you believe but all I can say is there are other brilliant options and dont let it get you on the bottom, keep me posted and good luck. PS my wifes transplant was performed at Newcastle RVI and they are brilliant from top to bottom. paul724@msn.com
Unfortunately Paul, things have moved on since my last post. It would appear that I'm going to have to go for the BMT option. Reason being that I've ran out of other choices.
Dastinib (have I spelt that right, oh well) just isn't being made available in the North East and the campaign may take sometime for it to have impact. Personally, I think it's a disgrace and will still campaign to make the drugs available if only so others aren't forced into having to make such decision about their right to life.
I'm worried about the BMT, however I'm sure it will be fine really. I've found the RVI to be spot-on and can't fault them with the treatment they have given me so far.
I hope your wife recovers soon and regains her health. Thoughts are with her.
Andy, I am 32 days into a 'mini' SCT............so far it has been without difficulty......read my blog
www.caringbridge.org/visit/susanleigh
it may help to allieviate some of your concerns, please email me if you have any questions
susan@famileigh.co.uk
Of course I don't know which type of TX they are planning for you but I am very happy to help if I can.
regards
Susan
Many thanks Susan
I'll have a look at your blog later. I'm at work at the moment so it will be after teatime.
I'm not sure what type of BMT I'm having, it's one of the things I need to ask on Thursday when I talk to the consultant and tell him 'okay, let's do this'. I know that I have several donors available to me, so the matching element is sorted out.
I've a list of questions for him as long as my arm. It's the 'facing the unknown' factor that's the big bugbear for me. It would help to chat with people who have had it done to find out what I'm facing and the good/bad points.
regards
Andy
hi Lorraine, thanks for joining us and making the effort to write to your MP. i think we will not have to go as far as a petition as the letters i have received from NICE indicate that our campaign has had an effect and the minister is to make a decision soon on whether to instruct NICE to appraise both new drugs. but we need to impart a sense of urgency as people are facing life threatening situations in some regions.
i have written to the minister Alan Johnson on behalf of cml support, my MP as a cml patient and to Ian Gibson and the other vice chairs of the APPGC (all party parliamentary group on cancer).
i you want to do more you could also write to Alan Johnson (see copy of my letter for his address at the DH) as an individual patient. i am sure the more letters sent by individual patients the better.
thank you once again for helping those cml patients like Andy and Paul's wife Sharon (who has now had a mini sct) plus several others i know of who are in dire need of an alternative therapy to Glivec.
best wishes,
sandy C ;o)
