Wednesday, August 15, 2012

Radiology trade media getting on board with breast density notification

It's good to see the radiology trade media recommend that radiologists get on board with breast density notification whether their state mandates it (yet) or not. Aunt Minnie, a radiological site, reports:
"Like it or not, the issue of breast density notification is here to stay, and women's imaging centers should educate themselves on how they will interact with patients and physicians on the issue -- whether or not their state has passed legislation, according to a presentation given on Sunday at the annual AHRA 2012 meeting."
And she quotes Bonnie Rush, consultant and president of Breast Imaging Specialists of San Diego:

"False positives and the 'anxiety' they produce is the most frequently cited objection to legislative efforts to communicate breast density and supplemental screening to women," she said. "But real anxiety comes with a late-stage diagnosis."  
"We've been 'selling' mammography as the earliest form of detection for all women, but the truth is that breast density is one of the strongest reasons mammography fails to detect cancer," Rush said to AHRA 2012 attendees. "Women need to be informed to allow them to participate in personalizing their screening according to their risk profile."

 I've said the same thing myself. Props to the reporter of this article, Kate Madden Yee!

Saturday, August 4, 2012

WABC Eyewitnesss News on the new law

Here is WABC Eyewitness News's story on breast density and the new law, featuring my breast surgeon Dr. Rachel Wellner. (Originally it was going to be me visiting Dr. Wellner. They cut me out of the segment--but it's a great, informative piece!)

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.

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

Monday, June 25, 2012

Here's the CBS Piece on the New York legislation

Here is the CBS News piece I'm featured in that went out to CBS affiliates across the country on Friday. It's shorter than the PBS piece that ran in May (starts at 16:34) but to the point.
Dr. Freya Schnabel: "Knowledge about density coupled with breast cancer risk assessment should be part of the whole conversation about how each woman should be screened for breast cancer."

CBS Correspondent: "Leighton didn't get that opportunity."
Sadly, doctors do not include women in that conversation, and that is what this bill is about.

Freeze frame at 1:22 and you'll catch my cat Oli G. getting a nice close-up and basking in his newfound TV stardom.

Friday, June 22, 2012

Watch this TEDTalk

NY Breast Density Inform Law Heads to Governor Cuomo's Desk.

If you have not seen it yet, you really should take a few minutes watch this TEDTalk by Deborah Rhodes that is like a crash course on the subject of breast density and the politics surrounding it.

The actual topic of her talk is a new diagnostic tool called Molecular Breast Imaging (MBI) that is far better than mammography in detecting cancers in women with dense breasts--it finds three times more tumors. But a lot of what she discusses is very pertinent to the breast density legislation that is on Cuomo's desk.

Will the MBI replace the mammogram someday? It's too early to say. Breast imaging specialists point out its limitations:  you can't biopsy from an MBI, but Rhodes counters that radiologists have always been able to localize the area with another technique once it is identified.  Regarding radiation, the effective MBI radiation dose to the body is about twice as high as the mammogram dose, but the MBI dose to the breast is actually less than the radiation dose from a mammogram. Dr. Rhodes says: "What that means for long-term breast cancer risk associated with this radiation is not known."

Dr. Rhodes advocates this tool over the ultrasound for women with dense breasts, while another hero of mine, Dr. Tom Kolb, prefers the ultrasound. What they both agree on, however, is honesty. Right now, what is important is that women with dense breasts get some form of supplementary imaging beyond the mammogram, be it ultrasound, MRI, or MBI. As we know, supplementary screening in Connecticut has doubled detection of invasive cancers. As Dr. Rhodes says, of course we should be telling women their density.

Doctors' orgs actually argue that being honest with women with dense breasts about the limitations of mammograms will discourage women from getting mammograms, and therefore should not be done. This is highly unethical, and denies women informed consent. (It's also insulting to women.) Doctors should not withhold material medical information from women for marketing reasons, or any other reason.

Thursday, June 21, 2012

Minor item: A couple of weeks ago I wrote about a certain immature assemblyman playing childish schoolyard partisan games at the expense of our bill and thus all New York women at risk of misdiagnosis. His district? Greece, NY, as it turns out, now suddenly famous for the mean-boy gang-up on sweet old lady Karen Klein, and the ensuing internet backlash. Coincidence? No idea. But when I saw "Greece, NY" in the news this morning, a bell went off on my head. "Who was that assemblyman from Greece, NY? Oh was he the one playing petty political games by refusing to sign our bill?"

Where are the adults in this town? Is it any wonder....Someone send these folks a copy of Aristotle's Ethics, stat.

Wednesday, June 20, 2012

A happy phone call

So I was at a restaurant last night with my family after an appointment at NYU when a call came to my cell from an 845 area code. I normally would not answer a call during dinner but it was an upstate area code so I suspected it was big news about the bill. To my surprise as I stepped out onto the street to take the call,it was Assemblywoman Ellen Jaffee herself calling to tell me that the bill passed!  What an honor Ellen Jaffee is the bill's assembly sponsor and I had the pleasure of meeting her when I went to Albany in early May for the press conference/lobby day. I was inspired by her passion for justice then and now. It was a joy to meet everyone who works in her office (including Ms. Jaffee's husband, Michael Virga, and Belinda the intern.)  Theresa Tolokonsky, her ├╝ber-competent legislative aide, was tireless and instrumental in getting this passed. Without the energy of this fearless team, the bill never would have left committee. (A similar bill died in committee last year. How long would this have languished without this concerted attention?) Big thanks also to State Senator John Flanagan and his staff for working hard on this bill.

However, no one would argue that anyone worked harder on this legislation than JoAnn Pushkin, the survivor who is the driving force behind this NY bill. (Props also to Nancy Cappello at Are You Dense and Julie Marron at the Institute for Health Quality and Ethics.)

So now it is goes to Governor Cuomo's desk for a signature. Seems like a no-brainer, right? It may seem unlikely that he could veto a bipartisan, unanimously passed bill to aid early detection for breast cancer, but Cuomo has already received intense lobbying and pressure from the American Congress of Obstetricians and Gynecologists (ACOG) to veto the bill. They will continue to pressure him. We have a letter of support from the New York State Society of Radiological Society but in the past the American Colleg of Radiology (ACR--officially neutral on this bill) has always lobbied hard against density notification legislation in other states and federally. I suspect they're leaving the lobbying to ACOG because ACOG seems more like a disinterested 3rd party (which they are certainly not). My feel is that they have been tag-teaming with ACOG on this bill.

Last year a similar bill came to California Governor Jerry Brown's desk. He did not consult survivors and advocates such as myself as he weighed his decision. Instead, he consulted the California Medical Association, who told him “The problem with this bill is that it gives a boatload of power to a lot of women who then become powerless to use that information” for insurance reasons. I blogged about the absurdity of that argument here. But Governor Brown vetoed the bill on the grounds that information about supplementary screening and subsequent diagnostic tests would cause women "unnecessary anxiety."

I don't know if a New York governor could get away with telling New York women they can't manage anxiety. But I'm leaving nothing to chance.

In our favor, we have letters of support from the Medical Society of the State of New York, the New York State Nurses Association, and the aforesaid Radiological Society letter.

Governor Cuomo needs to know New Yorkers care about this lifesaving legislation. Please fill out this contact form, copying and pasting the following long subject line (important):

"SUPPORT: A9586D/S6769B Relates to duties of mammography services to notify and inform patients if a mammogram demonstrates dense breast tissue."

Choose health care as the topic on the pulldown menu.

Thank you everyone who has been following and supporting this legislation. (This single-issue, single-state, single-bill blog has received 1,340 page views in less than two weeks of existence!)

One more stop to turn this bill into law!

Tuesday, June 19, 2012

Just got a call from Assemblywoman Ellen Jaffee--the bill just passed the assembly! On to Governor Cuomo's desk! (Grammar police, don't arrest me for my incorrect use of hopefully...) hopefully Cuomo will sign it within a week! A good day.

this just in

Bill just passed the assembly rules committee, is passing  assembly right now! Already passed state senate.
S6769B has passed the senate! That's the senate's identical bill. Now it just has to pass the assembly...

Monday, June 18, 2012

Bill Will Leave Rules Tomorrow (Tuesday)

 Update: Last I heard: bill is in rules committee right now.

Update from Albany: bill didn't come for a vote today in rules committee, but we have confirmation it will come for a vote tomorrow (Tuesday). After that it will head for the assembly floor.

Had my interview with CBS News today re the bill. Story will run this week. Will keep you posted with airdate and time as soon as I know.

Today I met a relative for lunch who recently asked her gynecologist if she had dense breasts. This relative is a senior citizen. Her gynecologist looked at my relative as if she was in delusion/in denial and replied to the effect that my she was far past the age where she had to worry about dense breasts. If this gynecologist actually looked at the hundreds of mammogram reports sent to her every year by her patients' radiologists, maybe she would know that 1/3 of postmenopausal women have dense breasts.

I could cite countless similar anecdotes of Ob/Gyn ignorance. It's sad that the American College of Obstetricians and Gynecologists (ACOG) is expending so much effort fighting this legislation that could be spent educating their rank and file about breast density. It is oft-speculated that concern about liability is what motivates their opposition to the bill (the speculation fueled by the sheer speciousness of their rationales). If that's true, ACOG would far better protect their rank and file through membership education efforts. Unless, of course, they're looking backwards and not forward. Meaning they figure they can't undo the harm they have already done to patients out of ignorance, and their only recourse is to continue to keep their patients more ignorant than they are.

Why else are they going to bat for keeping secrets from patients?

Sunday, June 17, 2012

Monday Monday...So good to A9586D

A couple of quick items:
  •  Breast density bill comes to a vote in rules committee on Monday! That's the last stop before it comes to the assembly floor! Then it comes to a vote in the senate . If you have not done so, call your assembly member and your state senator. Extra credit: contact Governor Cuomo with the bill # A9586D/S6769B in the subject. He's the one who has to sign bill for it to become law.
  • Note the bill's new name: A9586D/S6769B.
  • I keep threatening an upcoming major network news interview on this legislation. It's finally happening Monday morning. Just in time. I'll let you know the air date & time as soon as I find out. (I'll also reveal the network, of course.)
  • New Jersey's breast density bill heads to Senate.
  • I've corrected the link in my earlier posts, but in case you were not able to hear it, you can listen JoAnn Pushkin's interview on Brian Lehrer/WNYC about the legislation last week here.
And now your moment of zen:
"Notifying women directly of their breast density runs the risk of giving a false sense of security to women who are told their breast tissue is not dense.”--lobbyist for the American College of Radiologists (ACR) last year in opposition to similar Florida legislation (not yet passed).  

Confused?  That's because it's illogical, but try to follow for a second. What the ACR is trying to say is that it is perfectly OK to impart a false sense of security to women with dense breasts to avoid the risk that women with far less risk of misdiagnosis won’t be overconfident in their negative mammogram results. It's insulting to all women (yet another version of the oft-heard "they can't handle the truth" argument), while as always throwing women with dense breasts under the bus.

Thankfully, the New York State Radiological Society has come out in support of this legislation and there are signs that the ACR is evolving from their previous knuckle-dragging attitude on breast density notification. Can we speed up this evolution? Otherwise women will continue to be unnaturally selected by bad mammogram screening protocols.

Thursday, June 14, 2012

One more stop to the assembly floor...

This just in: New York Bill has passed the assembly's codes committee. Woohoo! (Thank you to codes chair Joseph Lentol and all who voted yea in committee.)  One quick stop in rules (chaired by assembly speaker Sheldon Silver) and it should be on the Assembly floor for a vote!

If you haven't heard it, listen to JoAnn's interview with Brian Lehrer here.

What JoAnn revealed: According to a conservative estimate, 2,000 women with invasive cancers receive false negatives on mammograms in the state of New York every year--cancers that could be detected by ultrasound.

Wednesday, June 13, 2012

JoAnn on Brian Lehrer and more

Update 2: Click here to hear JoAnn's discussion with Brian Lehrer/WNYC earlier today.

If you're in NYC, don't miss JoAnn Pushkin of Are You Dense Advocacy talking to Brian Lehrer of WNYC (local NPR affiliate) about dense breast legislation tomorrow (Thursday)! It's on 820 AM/93.9 FM at 10:25 AM.

  • Major network interview coming up--stay tuned
  • This blog is a week and a half and has received 1,108 hits! Not bad for a blog on a single piece of state legislation!
  • A big thanks again to Assembly Member Andrew Hevesi for reinstating his support for the bill.
  • If you live in Scarsdale/Westchester/Pelham/Bronxville/Pelham, please call Amy Paulin at (518) 455-5585 and ask her to support this legislation that will double the rate of breast cancer detection for women with dense breasts. (She voted it down in health committee.) 
  • I don't think I'd actually linked to the bill yet. So here it is.
Update: Welcome new readers. Useful links are on the left, and you can sign up to receive email updates on a link at the bottom of the page. If you live in NY, please contact your assembly member (find your assembly member here) and tell them to support the bipartisan Breast Density Disclosure bill S6769A/A9586C. As I said before, although the bill is a no-brainer, a lot of brains backed by bucks are going into killing the bill.

Tuesday, June 12, 2012

More ACOG Games with Words

You already know the good news: the bill passed the health committee yesterday (thank you chairman Gottfried and the rest of the members!) The bad news yesterday ACOG was out in full force in Albany, lobbying and pamphletting against the bill, hoping to peel off supporters. Among the ACOG group, we definitely have some strong contenders for the "Dense Boob of the Month" award, which this blog will confer in June.

Cute title I know, but as we know dense boobs are not funny at all. They are dangerous & deadly. They obscure cancer. They need to be taken care of. We need to see through them.

ACOG doesn't mind circulating statements that are easily refuted. If they can sow confusion in the legislature, that is enough to endanger this life-saving legislation. Take this statement from them:
"Breast density is a common condition. On a scale of 1 – 4....Level 2 is some degree of density and about 90% of all women receiving a mammography have level 2, 3 and 4 breast density."
ACOG is pulling a fast one. Millions of mammogram reports are sent to gynecologists every year. Breasts are not reported as "dense" unless they are level 3 or level 4. Level 2 breasts are not considered dense, even though they contain slightly more fibroglandular tissue than Level 1 breasts. It's like calling coffee with a drop of milk in it "light" because it's lighter than completely black coffee. It's not. To say level 2 breasts are "dense" is to change the definition of "dense breasts." Period.

 ACOG says "there is no consistent definition of dense breast."

(ACOG is taking advantage of the fact that computerized tools have been developed to measure density with laser precision, but they are not widely used. The BI-RADS tool is what is widely used.)

Take a look at the attached image. The two breasts on the right are dense; the two on the left are not. This is not rocket science!

Level 1        Level 2     Level 3       Level 4

(p.s. Cancer also appears as white on mammograms; hence this bill.)

My 2009 mammogram report that was sent from my radiologist to my gynecologist said "The breasts are extremely dense, which lowers the sensitivity of mammography." That report relied on the widely used BI-RADS mammogram reporting tool. There was no disclaimer on my report saying that the definition of density was subject to interpretation.

Now that patients are asking for their doctors to share with us the same information in the same language that has been used on our reports for years (without our knowledge), medical organizations are playing with words--at the patient's expense.

Another whopper: ACOG's pamphlet also said "there is no scientific evidence that dense breast tissue is a factor for higher risk of breast cancer."
From the words of the American College of Radiology in 2010:
"breast density in and of itself has been shown by several studies to be an independent risk factor for the development of cancer, with the relative risk for women with the most dense breasts 2 to 6 times that of women with the least dense breasts."
As ACR says, there are numerous studies, so when ACOG flatly says "there is no scientific evidence" I don't know how to square this talking point with anything resembling a truthful statement.

Keep in mind that ACOG has never challenged information about breast density before this became a legislative issue. I discuss the reasons they are fighting this in earlier posts. (control of information and malpractice concerns.) 

If you need to hear it from a doctor, read these remarks from Thomas Kolb, a radiologist, in support of this bill. Kolb's research in 2002 was awarded the distinguished scientific paper of the year by the American Medical Association.

Here is a list of assembly codes committee members and here is a list of assembly rules committee members. If you belong in any of their districts, please call!

Current co-sponsors and multi-sponsors of the bill are below. Hevesi has been crossed out because he's been peeled off by ACOG and their bogus arguments. I hope he'll be the only one. Hevesi has reinstated his support! Thank you Mr. Hevesi!

Now if any of you are in Amy Paulin's district (Scarsdale, New Rochelle, White Plains), please give her the what-for, as she voted against the bill in health committee.
 Sweeney, Gunther, McEneny, Abinanti, Lancman, Colton, Jacobs,
 Millman, Barron, Rivera N, Maisel, Hooper, Roberts, Russell, Castro,
 Quart, Cahill, Galef, Englebright, O'Donnell, Schimel, Scarborough,
 Weprin, Linares, Cook, Robinson, Clark, Cymbrowitz, Latimer, Lifton,
 Lavine, Braunstein, Pretlow, Moya, Rivera J, Graf, Simanowitz,
 Stevenson, Titus, Magnarelli, Meng, Gibson, Morelle, Cusick, Ramos,
 Gabryszak, Rosenthal

 Abbate, Amedore, Arroyo, Aubry, Brennan, Burling, Calhoun, Conte,
 Crespo, Crouch, Curran, DenDekker, Dinowitz, Duprey, Hawley, Hevesi,
 Losquadro, Lupardo, Magee, Markey, Montesano, Murray, Peoples-Stokes,
 Perry, Ra, Raia, Rivera P, Saladino, Sayward, Tenney, Thiele, Titone,

Monday, June 11, 2012

Bill Passes the Health Committee--2 More Hurdles

This just in: the bill has passed the assembly health committee! Very good news. It's on its way to the codes committee. I'll post more as I find out.

Update: 2 more committees to pass: codes and rules. I hope it will handily pass both committees, but word is ACOG was out there in full force today pamphletting and lobbying against the bill. So if your assembly member (find out who he or she is here) is in the codes or the rules committee, please contact them. Let's keep the pressure on. The other side is.

Friday, June 8, 2012

I Am Not An Anecdote

Whenever enemies of breast density awareness are faced with stories of women who have been harmed by lack of density notification, there are two words they reach for to discredit us. One of them is the hot button word "emotional." 

Leslie Moran, representing New York Health Plan Association (NYHPA) pulls it out here (fast fwd to 21:52)
 "Breast cancer is a very emotional issue. No one can deny that. But I think when legislating how things are covered we need to be able to put some of the emotion aside."
Notice the subtle straw man insertion "no one can deny that." Why, who would deny that a late-stage cancer survivor would be very emotional? Presto. I'm automatically discredited as a credible voice in this argument just because I have breast cancer. As if it's bad enough having a disease, suddenly anything I say is suspect. Because even I can't deny that having breast cancer is an emotional experience.

(What's funny about all this is that opponents of this bill are not exactly a bunch of Mr. Spocks. See  this three-page brawl debate with radiologists  in a radiology forum; registration required to view. One radiologist even called us "breast density nazis.")

But watch out, opponents of breast density notification, because when I and the other density advocates get emotional, this is what we look like:

(Image from Tumblr.)
The fact is that my film mammogram had only a 40% chance of detecting my breast cancer. To quote Ms. Moran, no one can deny that.

Another buzzword opponents of breast density notification keep handy is the word "anecdotal." Leslie Moran deploys both emotional and anecdotal in one sentence later in the same clip (fast forward to 22:39):
"We need to make sure that when we are talking about coverage of medical treatments that it makes the best medical sense, not the best legislative or emotional anecdotal sense."
 I almost feel sorry for Ms. Moran, because part of her job is to go on television and sound like a tool, and that can't be fun.

And to be fair, Moran was winging it. This legislation was barely on the insurance lobby's radar screen; they were counting on radiologists (ACR) and gynecologists (ACOG) to do the heavy lifting and kill it in committee, and suddenly the media drags the insurance lobby in for comment. They didn't have a prepared statement, so of course they hid behind ACOG's skirt letter of opposition, and then tap danced a little. Halfway through Moran's sentence she realizes she is not making sense at all (what could be wrong with a piece of legislation making legislative sense?) And that's when she pulls out the two-for-one, "emotional anecdotal."

A word about "anecdotal." It justifiably has a bad name in science but it's misapplied in this case. An anecdote is a dubious substitute for evidence, as in "I know a woman who ate twelve goji berries a day and her cancer disappeared."

But I am not an anecdote. 40,000 to 45,000 women in the US receive false negatives on mammograms every year (American Cancer Society). I'm just one example.  It's estimated that 10,000 women lose their lives every year from breast cancers that could have been treated at an earlier stage.

That's a lot of anecdotes.

But Ms. Moran has already won; the requirement for insurance coverage for additional screening was stripped from the bill last week despite documentation of a denial in coverage for a screening sonogram. Shame. However, the bill survives in its amputated form, and once the bill passes we can track whether insurers cover screening sonograms, and then come back to Albany and correct this if necessary. It's not ideal, but what's important is getting the notification bill across the finish line this month.

If it's any consolation, the bill now has one less deep-pocketed enemy.

I've heard that language has been tweaked in the bill to mollify Assembly Health Committee Chair Gottfried's concerns (without diluting the bill) so my fingers are crossed that the bill (now called S6769A/A9586C to reflect amendments) will get out of Gottfried's committee and onto the floor for a vote.