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LS 2016 Address by Pat Garcia-Gonzalez, CEO – The Max Foundation

Dearest Trustees, dear City Chapter Leaders of Friends of Max, dear Guests, it is my deepest pleasure to be here today with you.

This year more than ever I wanted to be present with you, to tell you that I am with you always and have been with you all along. I consider myself a member of your family, after all, you all are FOM, and because we are family, I am here today to speak clearly and openly with you all. With your permission, in the
next few minutes I would like to share my open and honest thoughts with you. I speak for myself and I speak from the heart, and everything I will tell you is my honest opinion which I share with you because you are the leaders of this important organization, FOM.

I realize that this has been a specially challenging year for all of us and especially for you; change is in the air, the winds have picked up and new challenges and also new opportunities are upon us. I love the theme of the summit, as it should help us set the mood for the discussions and dialog that needs to take place.

Someone reminded me not too long ago in Fb, the only constant  in life is change; it is so true! How we like to hang on to what is familiar, especially when it is pretty perfect, oh we never want  things to change, yet we know nothing ever stays the same.

For the past 15 years we have been on a journey; for many of you, your diagnosis, for some of us, the opportunity of being part of a miracle, the miracle of GIPAP, and for all of us it has been the program structure, the treatment itself and the program model that dictated our actions, our activities, our schedules, behavior.

I think in the back of our minds we knew something would happen someday to make things change, and this year it came. The catalyst of the change, the thing that popped the magic bubble was the levy that was imposed on Glivec imports, which completely disrupted an otherwise perfect program. From outside and perhaps from inside, it is really hard to understand how there can be a tax, how someone would be asked to pay to help people. I understand the issue is much larger than this program and no one purposely singled out this program, it just got caught up in a larger political and national move, but honestly it became a disaster. And despite great efforts from Viji, and from Novartis, for way too long it made the lives of every patient way too hard.

So today we are where we are, like it or not; no new patients have come into GIPAP for 10 months and I have to be honest with you, I don’t expect the program to open again to new patients. You all will be fine; at this moment the commitment is there to all of you, and I personally want to acknowledge the Novartis CEO for the commitment he has shown to each and every one of you as well as to 18,000 other families.

The levy, interestingly enough, was just at least partially waived recently after many months, and as a direct result of Viji’s efforts, but I believe the damage is done, the magic bubble was popped.

In the meantime, we are aware that there are some small, somewhat deficient state programs that cover imatinib for the new patients in some of the states. We know very well these programs are nothing compared to GIPAP, and we know those who need help the most will be in danger of falling through the
cracks. Our eyes are wide open, we understand these programs are far from being a solution. Truly I personally believe that the main problem is that no one has yet realized what it is like to live with chronic illness let alone chronic cancer, and most programs are not structured to support people living with a
chronic cancer. So what difference does it make if the supposed access is there but the conditions are such that no one can access the medicine in the way the treatment should be?

But here come the opportunities and responsibilities for all of us. The next few weeks, months and years will define who and what we are; what we do, what resources we are able to create; who can we influence and who can we help, how many people can we help…all this is now up to us; you and me, all of us here.

I firmly believe that something good will come out of this, but in order to move forward first we need to accept that things are no longer the same. I am here to say out loud, things are no longer the same and to help the new patients we need to look elsewhere.

But now it will be up to us to show our collective strength and to look at what is there and create something new that can make a difference for the new patients. Your national system, your country, favors local solutions and as such we ought to look for local solutions for the future. I believe that this is our collective obligation and I thank you for your leadership and for your hard work on behalf of every newly diagnosed patient in your states. They need us now more than ever.

Thank you for having me and for listening to me; I am happy to engage in an open dialog about today and about the future today and always.

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