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.)


-Hallie

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.

Monday, July 23, 2012

Breaking--Cuomo just signed the legislation! The Breast Density Inform bill is now law! Huzzah! Details  to follow...

Sunday, July 15, 2012

Eye on New York; and the ACR's Dangerous Games

Update: Here's the interview with Dana Tyler. I was first on the show, and it runs almost seven minutes.

I you live in New York, sign this petition to Cuomo to sign the bill. He is currently reviewing it.

(My regrets about the interview are that I did not find a place to insert due thanks to Assembly sponsor Ellen Jaffee and her staff, State Senate sponsor John Flanagan and his staff, and the Institute for Health Quality and Ethics for their research. It was my first ever studio interview but there will be more interviews where I will be able to give mad props to these heroines/heroes! I had never been more proud than when Assemblywoman Ellen Jaffee called me on her cell to tell me the legislation had passed both houses unanimously!)

And read below, where I debunk the American College of Radiology's "concern" about the bill: "In particular, unless supplemental screening was reimbursed by insurers, there may be an unfortunate disparity between women who can afford to pay for the additional screening exam and those who cannot.” (In internet parlance that's called concern trolling.) All this said, note that the ACR gives cautionary approval for the bill, and the New York State Radiological Society has written a letter of support.
--------------------------
Early bird New Yorkers: Watch me interviewed by Dana Tyler on Eye on New York on CBS at 6:30 AM. Late bird New Yorkers: DVR it--or I'll post the link when it's online. I am also being interviewed by Dana Tyler for CBS's annual special on breast cancer. I'll keep you posted.

I was also quoted in a piece in the Canarsie Courier about the legislation.

(If you came here from Eye on New York, welcome. Check out the links on the left. One that I forgot to mention is the Institute for Health Quality and Ethics. Sign their petition to congress to require FDA to enforce the Mammogram Quality Standards Act and stop the practice of withholding material medical information. As of this writing we're six shy of 1,000 signatures.  If the FDA enforced the law, state laws would not be necessary.)

The New York law is currently on Governor Andrew Cuomo's desk. He is currently doing his due diligence on the bill and I am optimistic that he will sign it.  That doesn't mean I am sure he will sign it so contact the Governor with SUPPORT A9586D/S6769B in the subject line.

Back to the Canarsie Courier:
Hallie Leighton, a Manhattan resident, is one of many victims who had information withheld from her by their doctors.
“I felt betrayed by my radiologist and gynecologist,” said Leighton, 41.
“If you have dense breasts, finding cancer on a mammogram is like trying to spot a polar bear in the snow. When people talk about the insurance costs of unnecessary biopsies for false positives, I want to show them my medical bills. What my advanced stage disease has cost my insurance company, and will cost it for a long time I hope, could pay for thousands of biopsies. [But] this is not about money but about saving lives.”
(Note that when I say I hope, I don't mean that I hope to incur medical bills for a long time, but that I hope to beat my odds and live a long time. My doctors say that as a Stage IV patient I will be on treatment for the rest of my life.)

The Courier mentions that the bill that passed no longer has a requirement that insurance cover additional screening.  That was killed in committee.

And then the American College of Radiology (ACR) has the absolute gall to cite that as a concern about the bill: "In particular, unless supplemental screening was reimbursed by insurers, there may be an unfortunate disparity between women who can afford to pay for the additional screening exam and those who cannot.”

I don't know whether the woman I met who detected her breast cancer early because she saw an episode of Oprah about dense breasts was richer or poorer than me. Newsflash to ACR: The unfortunate disparity already exists, it's a knowledge-based disparity, and you are largely responsible for it. 

And let us be clear: the ACR did not fight to keep the insurance provision in the bill. If the ACR had its way, this bill would have died in committee, and the only unfortunate disparity would be the one that already exists, the one between the 5% of women who know about breast density (including radiologists and their families) and everyone else.

Further, when there was an insurance requirement, the American Congress of Gynecologists (ACOG) cited the insurance requirement  as a reason to oppose the bill, since they said an insurance requirement was unnecessary ("ACOG is aware of cases whereby women have been unable to get additional breast  imaging if their physician believes the mammography result warrants further investigational study.") When an insurance lobbyist spoke to PBS about her opposition to the bill, she pointed to the very same ACOG memo I quoted from.  But now that the bill has been amputated, the ACR wants to deny knowledge to everyone, ostensibly to promote equality with a bogus class warfare argument.

As I said in a previous post, it's a catch-22: damned if you do, and damned if you don't. We saw the same nonsense in California last year. The California Medical Association actually used the insurance issue as an excuse to withhold material medical information from patients. So we're back on the merry go round.  Insurance coverage for screenings? Oppose. No insurance coverage for screenings? Oppose.

Let us be clear: it doesn't matter to ACOG or ACR or the CMA or the AMA whether there is an insurance requirement or not. They just want to kill the bill. They don't like being told what to do even when they are not doing their jobs.

I just met a woman from Illinois, the only state to require insurance cover additional screening for women with dense breasts but not requiring doctors to inform patients of breast density. (Connecticut is the only state with both.) The woman was 35 and felt a lump. She got a mammogram and was told it was normal and to come back when she was 40. She was not told she had dense breasts or sent for additional screening. The insurance would have covered her additional screening, but it did her no good, because she was not told she had dense breasts, so she did not know she needed additional screening. Now, like me, she is Stage IV. A lot of good the insurance coverage did her.

Ideally, this bill would require insurers cover sonogram screening for women with dense breasts. However, if forced to choose between an insure-only and inform-only bill, I'd take inform-only, so women can at least begin to be informed of the issue. Then they can advocate for insurance coverage. If insurers are not good to their word about covering additional screening when requested, we'll go back and fix this law. However, the lack of insurance coverage is no excuse for continuing to withhold information from patients. And that's just what ACR and ACOG want to continue to do.



Monday, July 9, 2012

Update on bill, and promised award

Update on bill: the legislation is currently under review by Governor Cuomo's office. After researching the issue, Cuomo's staff will make a recommendation and then Cuomo will decide whether to sign. This is standard for any legislation.

The American Congress of Obstetricians and Gynecologists (ACOG) continues to do everything in their power to keep the bill from becoming law.  I hope they have the same success preventing signing of the bill as they had preventing the bill from being passed.

You may remember my open letter to ACOG chastising them for their lack of decorum while lobbying against the bill last month. To quote ACOG's own account of their visit: "The laughter from one of our tables could be heard throughout the Capitol Deli." I pointed out the gross insensitivity of broadcasting gaiety on the occasion of lobbying against legislation that will prevent unnecessary late stage breast cancer diagnoses. There is no more literal example of adding insult to injury.

ACOG District II Chair Dr. Eva Chalas's response to my open letter: Nada. Zip.  Is this surprising?  In her organization's calculus, we—the late-stage survivors and grieving families—are collateral damage. We are a hindrance to her organization's desire to maintain the current (sub)standard of care in New York. We and our late diagnoses are to be ignored.

ACOG says "The reaction to direct patient notification regarding a dense breast finding could result in
unintended consequences, such as unnecessary additional testing and invasive procedures."

First of all, are biopsies from suspicious mammograms unnecessary? Not all biopsies from mammograms are positive, but they are not called unnecessary. Biopsies from suspicious sonograms, which has doubled the detection rate for invasive cancers for women with dense breasts in Connecticut who opt for the screening. Unnecessary?

Second, isn't that for the patient to decide? Why is Dr. Chalas arrogating that decision for herself and other doctors? The intended consequence of this legislation is increased rate of early invasive cancer detection, and as cited above, it does this. Dr. Chalas omits mention of this. Again, women who could be diagnosed early don't matter.

You may also remember that I promised to confer the Dense Boob of the Month Award for June on a deserving recipient.

To be honest I really hoped to reserve it this award to a man, but I have decided to put aside my gender biases. Both men and women can be boobs.

And Chalas had little competition. (However, in the spirit of egalitarianism, I urge her to share the award with her laughing lobbying companions of District II. A list of them is below, from their newsletter.)

Two images of an extremely dense boob: left, and Dr. Eva Chalas at a Fall Fashion Festival on right.



This award is not as funny as it sounds. As many women have found out the hard way, dense boobs are a threat to public health.

I have more upcoming media appearances (including TV) and will keep you posted. 

The Laughing Lobbying Ob/Gyns (runner up boobs)
Matthew Blitz, MD
Ana Cepin, MD, FACOG
Eva Chalas, MD, FACOG, FACS
Cynthia Chazotte, MD, FACOG
K. Michelle Doyle, CNM, LM
Leah Kaufman, MD, FACOG
Nicholas Kulbida, MD, FACOG
Ellen Landsberger, MD, FACOG
MaryAnn Millar, MD, FACOG
Howard Minkoff, MD, FACOG
Allen Ott, MD, FACOG
Lawrence Perl, MD, FACOG
Hartaj Powell, MD, MPH, FACOG
Mary Rosser, MD, FACOG
Naomi Ufberg, MD
Ronald Uva, MD, FACOG
Mary Margaret Wilsch, MD, FACOG