It is vitally important to state that as far as we are aware, all versions of generic imatinib are the bioequivalent of the original drug (meaning they have the exact same active ingredients). If you are taking a generic, under the supervision and recommendation of your consultant, please carry on. Do not stop taking your drugs based on this information. We are CML patients and any clinical advice MUST come from a medical professional.

My good friend Nigel Deekes, who founded the CML-UK Facebook group, was switched to generic imatinib in early January. It appears he was one of the first to switch and being the diligent chap that I know that he is, he read the packaging.

The packaging on at least two of the generic drugs (as we understand it, this does not concern imatinib generics manufactured by Teva and Sandoz) suggest that the drug, for adults, is for blast crisis only and not chronic or accelerated phases. Blast crisis is an advanced form of CML. These generic drugs are not for blast crisis only and if you see this on your box or instructions it DOES NOT mean your disease has progressed. Also, it does not mean that your generic imatinib isn’t working. The generic drugs are the same and are safe but the indication on the leaflet in the box does not cover all phases.

Both Nigel and I agree that this is most unacceptable. Not only does this issue have the ability to mislead and worry patients, it is also indicative of the entire generic switch process. Be mindful that this issue was found by a patient and not through, what should be, a rigorous checking process, administered by NHS England. When we consider the lack of consultation and information provided to patients, this is not surprising.

All things being considered Nigel and I believe that generic imatinib patients who have incorrect information on their box should contact their hospital and ask to be put back on branded imatinib. We believe we are within our rights to do this as the indication on the leaflet is not for our stage of the disease. We could be accused of being pedantic but we want to be clear that patients should be prescribed the correctly licenced drug for our illness. Some patients have already swapped back to branded imatinib without any problems as their hospitals have acknowledged this issue.

The issues will take several months to resolve and at that point, we would recommend patients take up the offer of generic imatinib once again.

Our reasons for refusal are straightforward. We do not want life-saving drugs being used with information on them that has the potential to mislead the patient about their diagnosis. Generic imatinib is not the only drug available for treatment of CML, therefore there is not a risk in reverting back to branded.

If you are a generic imatinib patient please contact your consultant and ask to be put back on branded if your box indication is incorrect.

If you are a branded imatinib patient who is yet to switch, please discuss this issue with your consultant at your next appointment. Please do not be alarmed if your clinician still prescribes generic imatinib, they are able to prescribe ‘off label’ and they will discuss this with you. This information is design to ensure that you are included in this decision-making process.

PLEASE do not switch drugs or stop taking medication unless your consultant approves it.

All indication suggests that generic imatinib is good and safe to take under the direction of your consultant. It is the labelling/indication that is wrong.

For more information on generic imatinib and generic drugs please visit these useful resources from Leukaemia Care:

Generic imatinib for chronic myeloid leukaemia patients
Generic medicines – What are your rights?

Thank you.

Kris Griffin & Nigel Deekes

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