Five UK CLL Patients to Sound Off

As mentioned earlier, I am leading an online discussion in January featuring CLL patients from around the world in an online "meet-up" with pharmaceutical leaders from, around the world. They want to speak directly to CLL patients and I am particularly looking for 4 (or 5) from the UK. It would only take about 1 hour of your time and you just connect via your webcam. The reason for doing this is to help the audience understand our needs so they are inspired to develop better medicines, a cure!, and make it all more accessible and affordable.

Dear UK friends, If you can join me, please email my colleague Autumn Eadon at autumn@patientpower.info. Autumn is the producer of the "Patient Cafe" which you may have seen and this will be very similar. Thanks for helping me tell our story to high level people who want to hear it. I believe it can lead to better, more affordable treatments for us.

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Do you want people who have had treatment or on watch and wait?

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I was just about to ask that question. Xx

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just the diagnosis, treatment or not does not matter. Just living with CLL

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any cll status, no matter

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I am sure I have already replied to Autumn but no response as yet.

Mike

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Hi Mike, she's working through the responses. Thanks for being willing to help!

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Thank you for all you do. I do hope that relief will come in terms of cost containment. Imbruvica is now a maintenance drug and at 120,000 us dollars per year only a rare individual can manage this cost without insurance. And even if covered by insurance in the US, the result has been the sky rocketing of insurance premiums, and ever increasing deductibles. Until a cure is found, treatment will mostly be maintenance therapy. It does not appear that society can sustain the costs of cancer therapy without some type of major intervention.

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yes cost is a huge issue for ongoing therapy.

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In followup, I ran a few numbers. It only takes 8,334 patients on Imbruvica for 1 year to generate 1 billion US dollars for AbbVie. There has to be some type of balance between the investors on Wall Strreet and humanitarian need and a more sensible profit margin.

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