Petition Tag - glivec

The Chronic Myeloid Leukaemia (CML) Support Group have grave concerns about the provisional recommendation contained in the Appraisal Consultation Document of dasatinib and nilotinib for ‘imatinib intolerant’ Chronic Myeloid Leukaemia.

We question the wisdom behind the appraisal committee's decision to separate the two sub-groups of patients because we understand that it is difficult to separate 'intolerance' from 'resistance' with clinical precision. We also point out that in actual clinical practice, both categories of patients who have failed to respond to Glivec, already enjoy increased progression free survival and quality of life benefits from therapy with Tasigna and/or Sprycel within the UK and throughout Europe. Separating the two sub-sets of patients in order to assess the Glivec intolerant group in isolation is, in our view, not only cynical but absurd and unethical.

Should the appraisal committee's recommendations be upheld, patients with chronic or accelerated phase CML who prove to be intolerant to Glivec, will be offered other treatment options from a list of far less effective therapies used prior to the introduction of Glivec. Several of these options can in themselves be life threatening, most have well documented seriously debilitating side effects and one is purely palliative. With the exception of stem cell transplantation, which has relatively high morbidity and mortality rates, and for which is inappropriate for the majority, in almost all cases of CML the alternative options suggested by the committee, do nothing to halt the progression of the disease and for this reason alone are rarely used in current clinical practice.

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Nicholas Poulos is 30 years of age with a wife and 20 month old daughter. Nick was diagnosed with Chronic Myeloid Leukaemia in the Chronic Phase in April Last year. Nick's only options for remission are the drugs Interferon, the new drug Glivec or a bone marrow transplant. As he has no suitable donor at the moment for a bone marrow transplant this is not an option.

Unfortunately Nick is intolerant to the drug Interferon as he suffered an extreme adverse reaction resulting in him being hospitalised.

This leaves Glivec as the only option unless a suitable donor is found for a transplant.

Glivec is only available under the Federal Government's Pharmaceutical Benefits Scheme for patients with Chronic Myeloid Leukaemia in the Accelerated or Blast phase. The accelerated phase is when the disease is developing more quickly. The Blast phase is the final stage of Chronic Myeloid Leukaemia and patients in this phase would have only a matter of months to live.

Obviously we do not wish to wait for him to reach this stage. Currently the cost of Glivec is $4000.00 per month.

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