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Breast cancer victim writes letter to Gov. Brown after he vetoes SB791

By Steven Harmon
Monday, October 10th, 2011 at 11:17 am in Uncategorized.

Dear Governor Brown,

I am writing in response to your veto message regarding SB 791, the breast density notification bill.

I am the person who brought the idea for the bill to Senator Simitian and the bill had tremendous personal importance to me. My own breast cancer diagnosis was delayed because I was never informed that I have dense breast tissue and was at an increased risk to develop breast cancer. I was also never informed that the annual mammogram screening I underwent had very little chance of detecting cancer due to my high breast density.

In your veto message, you cite the “unnecessary anxiety” that breast density notification would cause. I ask you for a moment to consider the “anxiety” of a late stage cancer diagnosis. As if that isn’t devastating enough, imagine learning that your cancer might very well have been detected at an earlier stage had you received notice that you have a condition that masks breast cancer. There is no comparison between the speculated “anxiety” that breast density notification would cause and the “anxiety” of a late stage cancer diagnosis.

Secondly, you state that you talked with doctors you respect to come to your decision. I wonder why you did not also talk with patients who have suffered the ramifications of lack of notification of their own breast density? Perhaps you could have spoken to their husbands, partners and children? To have a complete and balanced understanding of the issue, why didn’t you talk to the many doctors in California who have been voluntarily informing their patients of their breast density and offering supplementary screenings to them? They would have told you that in their practices, they are doubling the rate of cancer detection by using supplementary methods of imaging. The cancers these physicians are finding (in patients with negative mammogram results) are very small and have not yet traveled to the lymph system – an extremely favorable prognostic finding.

My father, the late Dr. Gene Feldman, was a doctor you respected. In 1976 under your first term as Governor, you appointed him to serve on the Board of Medical Quality Assurance. He proudly served under your leadership until 1983. A pediatrician deeply beloved by his patients and their families, he lived his life devoted to charitable works and public service. He believed in seeing the patient as a whole person and everything that goes along with it, most importantly, educating them to be full partners in their own health surveillance. He believed in every patient’s inherent right to information about their own physiology, especially information that poses a risk. One of his many gifts to me was the pursuit of social justice, and this is what compelled me to try to spare other women from experiencing what I have endured. My father passed away just a few months before my diagnosis and did not have to endure the agony of witnessing his child fight for her life. I can only imagine the sense of injustice he would have felt upon learning that it could have been diagnosed earlier and that a small, but critical piece of information had been withheld from me.

The American Medical Association Code of Ethics Opinion 8.082 states “Withholding medical information from patients without their knowledge or consent is ethically unacceptable”. This issue comes down to the basic right of a woman to know her breast density, information that could save her life. Legislation is necessary is because the medical community has been well aware of the problem for 35 years, yet the information is still not forthcoming. How many more women need to die before that standard changes?

Sincerely,
Amy Colton

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  • http://@kimwhit Kim Whittemore

    Steve, as we both know, no one has attacked the dense breast issue in CA with more tenacity, grace and pureness of motive than Amy Colton. Her tireless…..no herculean efforts at the expense of her health, family, reputation and livelihood will stay with me forever. I am including a note I wrote to her earlier today which hopefully begins to communicate the debt of gratitude we all owe her. While the “fight” for patient’s rights and the need to educate and inform clinicians and women patients about breast density continues, Amy has already had an untold impact-saving breasts, lives, families from the horrors that she and so many others have endured.

    I did not think it possible to be more moved than I was during our conversation yesterday. I was wrong. I know you are seeking your “life” back – I respect that and will not share this beyond this email unless you instruct or authorize me otherwise. I was not going to “reply to all” but felt compelled to share my brief observations with everyone.

    You have inspired me to be a better person…to do more with less and do it selflessly. I am honored to call you my friend and am here whenever you need or want…..You have and will save many lives and families and breasts – all from the horrors of cancer and caused by lack of awareness for us and disclosure by our docs.  Patients have rights and I will fight for those as long as I am around.  You have made THE world a better place and in doing so, made my little world a better place too.
    Ralph Waldo Emerson comes to mind: What lies behind us and what lies before us are tiny matters compared to what lies within us.

  • Ward Sullivan

    Governor Brown:

    In response to your veto message regarding SB 791, the breast density notification bill.

    In your veto message, you cite the “unnecessary anxiety” that breast density notification would cause. Intentionally withholding life saving medical information from patients without their knowledge or consent is not only ethically unacceptable, but also smells a bit like conflict of interest. There is much doubt that you actually spoke with doctors who advised you in this direction of denying patients their own info.

    Isn’t it much more likely and somewhat obvious that you were influenced by lobbyists of big pharma, or other medical companies who would not benefit from this bill?

    You sold out your community again Gov.
    If you wake up today and hear a giant sucking sound… that would be female voters and their families leaving your camp.
    You did wrong Mr. Brown. You likely may over time, have caused the unnecessary early death of many women by not helping them manage the up to 6x risk of cancer they have with dense breasts.

    You clearly acted for for industry over people. Shame on you Gov Brown. Shame on you.

  • John W

    Good for Jerry. I don’t necessarily agree with the “unnecessary anxiety” argument. If I were a doctor, my inclination would be to error on the side of disclosure — both out of respect for patients and out of desire to avoid being sued. However, I am strongly against legislators getting into the business of substituting their judgement for the informed good faith judgement of doctors. There are many other areas beyond the breast density matter where legislators might decide to start prescribing standards of practice. I don’t think we should start down that slipperly slope.

  • Towny M.

    It’s really a shame that legislation like this is even necessary. My thought was always that a Dr. would always share this type of information with their patients. I have come to learn from personal expierence that this is not the case. I wish EVERY doctor would give ALL the information to their patient and let the patient decide what to do with that information ! It’s my body and my money. Give me the info I paid for !

  • Jennifer H.

    I for one am soooo very sorry I voted for Gov. Brown. I really had faith in him BUT he has CLEARLY shown he is in the pockets of the lobbys. I also had dense breast tissue and had my mammograms faithfully every year. No one mentioned that they were a waste of time until AFTER I went to check a self discovered lump (found a month or so after my annual mammogram. I figured the lump was nothing since I had just had a mammogram and delayed several months). I’m pretty lucky. My lump was close to the skin and easily felt, but my delay caused a diagnosis of Stage 2a. I went through chemo and 6 different surgeries. I’M DONE WITH YOU JERRY BROWN AND I PLAN TO LET EVERY PERSON I CAN FIND KNOW WHAT YOU DID. A SLAP IN THE FACE TO ALL WOMEN DURING BREAST CANCER AWARENESS MONTH.