Tuesday, July 24, 2012

It's now law in NY--Thoughts and Thanks

New York's Breast Density Inform bill is now law. Governor Cuomo signed it yesterday. The law takes effect in 180 days. Thank you, Governor Cuomo.

I am over the moon, even though it's little bittersweet. This bill will not help us, the late-stage advocates, in any way. It will not improve our odds of survival. It will not reverse our late-stage diagnosis. It will not bring back Teresa, or lessen her widower's pain. But we're still over the moon. We accomplished something big. The bill will improve early detection and save lives. And I can't say there's nothing in it for me personally. The respective senate/assembly sponsors (Flanagan and Jaffee) who championed this bill, legislators who voted for it, and Governor Cuomo could not reverse my diagnosis but in signing in effect said: Yes, you matter. You are not expendable.  It is not acceptable that information provided to your doctor was withheld from you. It is not acceptable that you are collateral damage in today's one-size-fits-all breast imaging system. Your life is not worth sacrificing to spare other patients "unnecessary anxiety." 

"Unnecessary anxiety"--that was the phrase Governor Jerry Brown used in his veto of California's Breast Density Inform bill last year. It was such a punch in the teeth that it galvanized me to do everything in my power--in between chemo and radiation treatments--to help JoAnn and her organization get the New York law passed. The only way the anxiety could be considered "unnecessary" is if you take the 40,000-45,000 women a year like me out of the equation--the ones who were misdiagnosed on mammograms, and the 10,000 of them who will be dead in ten years as a result. Only by ignoring our existence could Brown and others say that supplementary screening for women with dense breasts is unnecessary. If we exist, then Brown's statement is nonsense and a lie. The flaw in logic--and the insult therein --catapulted me into action.

I've met some amazing women in the late-stage cancer club. But I want to see fewer members. Breast cancer is the biggest killer of women in my age group (35-50). Breast density generally decreases around the age of 50. Could there be a connection here?

And yet a few months ago there was a lot of publicity about an Annals of Internal Medicine article that recommended that women with dense breasts get mammograms earlier because of their increased risk of breast cancer, with no mention of the need for supplementary screening because of the difficulty reading these mammograms. Really?

Women in CT, TX, VA, and now NY are now protected from misleading mammogram letters. There is legislation in sixteen other states. There's a federal bill.

The Institute for Health Quality and Ethics holds that none of this would be necessary if the FDA were to enforce the Mammogram Quality Standards Act that requires the results of a patient's mammogram report be communicated to her in clear language. "Normal" is not synonymous with "unreadable."

(My gynecologist did not understand that "less sensitive to mammography"--words that she saw on a report I wasn't privy to--meant 75% unreadable. This is why it was a profound disappointment that gynecologists were not supportive of this legislation.)

Meanwhile, the California legislation was revived. Watch the ad below in support of the legislation.

Governor Brown, the women of California will keep sending this to your desk until you sign it or your replacement signs it. Because we are not expendable and diagnosing us is not unnecessary. My false negative diagnosis was unnecessary.

Lastly but not leastly, thank yous:
JoAnn Pushkin of Are You Dense Advocacy was the prime mover here in NY and led the charge, working tirelessly for years getting this legislation passed. Her efforts have paid off. Nancy M. Cappello got the whole ball rolling by getting the law passed in CT that this bill is modeled on. State Senator John Flanagan was an amazing champion of this bill from its inception, as was his staff. Assemblywoman Ellen Jaffee is my heroine--she was such an eloquent and effective spokeswoman for the bill (leave thanks on her Facebook page). So is Theresa Tolokonsky, her legislative aide, and the rest of the staff in her office. 

Julie Marron, Tom Nerney, Jean Fogelberg Bowen and the everyone from the Institute of Health Quality and Ethics were inexhaustible and provided invaluable analysis that helped the governor's staff separate fact from science fiction in their due diligence on the bill.

Teresa Lacey Montant was a tireless advocate for the legislation, may she rest in peace, and her widower Townsend Montant helped bring this to the finish line. Thank you to everyone in New York who wrote letters and made phone calls to legislators and the governor. Thank everyone else who lent support good vibes! Thank you to my Mom, Aunt Wendie, and all my other loving relatives and friends for your invaluable support. Thank you Lizzie for your media help.

Thank you to the journalists who saw the importance of this issue and gave the dark secret of breast imaging the sunlight it needed. WMHT/PBS, Albany Times-Union/Capitol Confidential, Brian Lehrer/WNYC, CBS New York Now and CBS/Newspath, Canarsie Courier, and many others.

Thank you to Gail Horowitz and Alan Brill for your support and help.
Thank you cousin Geralyn Lucas for providing me the template for being a cancer-fighting activist.

Thanks to Lisa Ullman for her due diligence on the issue of breast density, as well as Jim Clancy at the Department of Health and Jim Introne and Donna Frescatore in the Executive Chamber. Thanks to Jeanne Engwer for her behind-the-scenes scheduling. 

And thanks again to Governor Cuomo for signing this life-saving legislation. (Cuomo's Facebook page is here. If you get a chance, go to his page and thank him.)


p.s. I have an upcoming interview on ABC Eyewitness News next week--I will keep you posted.

UPDATE: WMHT/PBS says that their feature about me (starts at 16:34) was the most watched online in the first six months of 2012.


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