NICE (National Institute for Health and Clinical Excellence) have recently returned their provisional results on Nilotinib and Dasatinib as alternative therapy for Imatinib (Glivec / Gleevec) intolerant patients. Basically they are denying these patients a chance of life on what I can see as purely a cost issue.
The CML Support Group has set up an Online Petition against this which I implore you to sign.
A representative of the CML Support Group said ‘Patients are angry, frightened and very frustrated by the provisional recommendation by the NICE appraisal committee- a recommendation that seems to us to have much more to do with cost cutting than with a rational appraisal of two highly effective and innovative therapies.
If the recommendation is upheld, and NHS funding of these therapies is refused in cases of imatinib intolerance, it will undoubtedly cost lives. It is a shocking prospect that UK citizens, who prove to be intolerant to standard dose imatinib (Glivec) will be denied access to such effective and life-saving alternatives. Clinicians will find themselves unable to offer these therapies to their patients in the knowledge that expert clinicians in Germany, France, the Netherlands and other EU countries, will continue to treat CML patients with these life-saving therapies. NICE have clearly acknowledged that both nilotinib (Tasigna) and dasatinib (Sprycel) are clinically effective and very well tolerated oral therapies.
It is difficult to understand why NICE have singled out imatinib (Glivec) intolerant patients in chronic or accelerated phase CML (but not blast phase) for a provisional recommendation that they alone should be denied access to these life-saving therapies. As a consequence, this group of patients, who currently represent around 30-40 British citizens of all ages, will suffer an appalling injustice that puts them at great risk of dying from acute (blast) phase CML.
We call upon the Secretary of State for Health to ensure all CML patients intolerant of Glivec (imatinib) have equality of access to these life-saving drugs.
This reminds me of the issues I had back in 2001 when trying to get Glivec. You can read the outcome on My Leukaemia Story.
It is difficult to put into words how this makes you feel as a patient. Jed’s story on the video below sum’s up the issues and feelings and I strongly recommend watching the short clip.