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Advocate I.N. sent this letter, January 2008:
Reference: Vote on Avastin
Dear Dr. Von Eschenbach:
Here comes your opportunity to make history, for I know you are faced with a situation that will test your scientific independence to the limit, and put considerable demands on your strength of will.
As a breast cancer survivor and active member of the dynamic Breast Cancer Action, the highly-regarded National Breast Cancer Coalition Fund, and the acclaimed Annie Appleseed Project, and as an avid reader of Dr. Ralph Moss (who does not need to be introduced, as I am sure you will agree), I feel I am talking not just for myself, but for a large and ever increasing constituency of my sister breast cancer survivors, who are becoming more concerned every day about the current state of cancer research in general, and the medicine-approval process in particular.
You and I know that Avastin, like many other cancer drugs produced in the recent past, does not result in any meaningful life extension, let alone any improvement in terms of quality of life, especially in the case of breast cancer.
Unfortunately, one sometimes gets the impression that this is NOT an issue with your and other agencies involved in either cancer research or medicine-development decisions.
I am with Natalie Compagni Portis, patient representative on the ODAC committee, who helped defeat the proposal to recommend Avastin for first-line use in advanced breast cancer. As Ms. Compagni Portis put it:
"Absolutely it's a very painful reality that metastatic breast cancer is not curable." and Ms. Compagni Portis added: "I don't think that means that we should just say, ‘Well, here, try this,' if there isn't meaningful data to support it." (New York Times, Dec. 6, 2007).
There is, indeed, a big difference of opinion between us, the patients (the ones really concerned by this dreadful disease), on one side, and the researchers and doctors who stand to benefit from this situation, and who have, obviously, been siding with the drug manufacturers, thus compromising their scientific independence and losing our trust and esteem, we their patients.
Or did you think we had not noticed?
Fighting cancer (or any other life-threatening ailment) is supposed to be a partnership, not a confrontation between practitioners and patients.
The easy way out for you would be to overturn the vote. However, I urge you, and I challenge you NOT to choose the easy way out. Please do not yield to this pressure. Please show us your concern for and commitment to cancer research and proper drug-development methods by doing the right thing: LET THE VOTE STAND. In addition to that, I urge you to open the debate to end this shameful, unfair, dishonest, and misleading practice of using "surrogate endpoints such as "disease-free interval" and "time to progression" instead of the much more clinically meaningful measure of overall survival."
We, patients, are NOT interested in 4 versus 3 months "disease-free intervals." And we are NOT interested in "pills for prevention" and other "preventive" measures, all of which come with frightening warnings about side-effects (including..... other types of cancer--merely disease substitution!): isn't this a really sad state of things? What we patients are interested in is a cure. What we are longing for is an acceptable quality of life (not an existence plagued by medicine-induced pain). We are interested in being here 20 years and more from today. For our families, for our loved ones.
And we are losing patience. Many, many, of us have already lost faith in "conventional" medicine due to such unacceptable practices on the part of the official agencies we would like to rely upon to help us in our struggle. And I can assure you that more people are made into skeptics every single day that officials "in charge" make decisions based on financial considerations, instead of giving patient welfare the priority it deserves.
Please do not miss this opportunity: your agency is running out of opportunities.
I.N., advocate January 2008
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