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 über-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.

Also,
  • 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
BI-RADS

(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.
 
COSPNSR   
 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

MLTSPNSR 
 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,
 Weisenberg
 
 

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.
This just in: The New York Radiological Society has submitted a letter of support for S6769A/A9586B, redeeming my respect for the profession of radiology. I'll post it as soon as I have it.

Wednesday, June 6, 2012

Bill Name Change (Now A9586B)

A bill supporter writes:
"I have been calling, and no one was able to find it as A9586 until I hollered and then they found it as A9586B, amended to reference a change to "Health." Just wanted to let you know, in case anyone else runs into this."
Thanks for pointing this out. The bill just moved from the insurance committee to the health committee, so I guess they retitled it to reflect that. I think the senate bill name is the same but I'll find out and keep you all posted.

Open Letter to ACOG

No response yet from the American Congress of Obstetricians and Gynecologists (ACOG) to my open letter to them sent Monday (reprinted below the fold), further to Sunday's post.

Assuming it is not a genuine apology with reversal of position on the legislation, I expect when (if) it comes it will be breakfast, lunch, and dinner for me as far as blog-writing material goes.  They really do crank out a lot of whoppers.

Take this one:
"Based on data from a similar law in Connecticut, the legislative standard of care has created a medical standard of care whereby all women with dense breasts are referred for additional imaging – this is a clear and expensive example of defensive medicine."
What they omit about the Connecticut law is that the rate of cancer detection has doubled for the women who receive additional imaging. If that's an example of "defensive medicine," then defensive medicine doesn't deserve its bad name. It sure is a big omission.

(As faithful blog reader Brian M. points out, ACOG is actually the party practicing defensive medicine by trying to set a (low) standard of care that protects them from malpractice.)

Expensive? They should see the medical bills of a late-stage cancer patient. I'm kind of an expert on this. As I said in Albany, my medical bills in the last two years (mostly covered by insurance) could pay for thousands of sonograms and biopsies.

Also note that nobody is forcing gynecologists to order sonograms. The law only compels radiologists to alert women of their breast density and the difficulty mammograms have reading dense breast tissue so the patient can discuss it with her gynecologist. It's called informed consent. Let the patient get the information and decide.

All of ACOG arguments are equally weak. Don't miss my dismantling of their patently hypocritical insurance argument last week ("ACOG is unaware of cases whereby women are unable to get additional breast imaging." You are now.) More to come.

What's sad and scary is that these obfuscations are coming from an org that represents gynecologists--the very doctors that so many women depend upon to treat us and look out for our best interests. If they will so easily put the best interests of patients aside, how can patients trust them?

Open letter to ACOG follows.

Tuesday, June 5, 2012

The good news: The breast density bill has left the assembly insurance committee. The bad news: it's moved to the health committee instead of the assembly floor. The good news: the health committee is chaired by Dick Gottfried, a Manhattan Democrat generally committed to progressive causes. The really bad news: rumor is that Gottfried is completely cold to the bill. I haven't confirmed this yet. Would he really be willing to throw women under the bus?

Some cold hard stats:
  • In the US, 40,000 to 45,000 women's breast cancers are missed on mammograms every year primarily due to breast density (American Cancer Society).
  • 10,000 women a year die die of cancers that were missed on mammograms (because of breast density) back when the cancers would still have been treatable. That's one quarter of breast cancer deaths every year that could be prevented with better screening protocols. (Institute for Health Quality and Ethics)
  • In Connecticut, the rate of detection has doubled for women with dense breasts who receive ultrasound screening. 
This bill is a no-brainer. Unfortunately a lot of brains (powered by $) are devoted to killing the bill. As documented in Sunday's post, some of them are completely heartless and self-absorbed, bragging about getting a lot of face time with assembly members in between yuks at the Capitol Deli.

Gottfried's district (75th) covers Chelsea, Hell’s Kitchen, Murray Hill, Midtown and part of the Lincoln Center area in Manhattan. If you live in his district or know anyone who does (find out here), please call him/tell them to call him immediately at 212-807-7900, tell him you are a constituent and to get Bill S6769/A9586 out of his committee and up for a vote this session. Many women's lives depend on it!

Monday, June 4, 2012

Governor Cuomo's Got a New Bag

Cuomo just came out for decriminalizing small amounts of marijuana that are in public view. Although pot is not my bag, I know many fellow late stage cancer survivors find it an indispensable anodyne for managing pain from metastases (not to mention nausea/appetite loss for chemo). So I applaud Cuomo's initiative not just as a commonsense measure, but as one that will particularly benefit cancer patients. . Palliating late stage cancer symptoms is a good thing.

Preventing late stage diagnoses is even better.

I look forward to hearing from Governor Cuomo that he supports joint bill S6769/A9586. So please pipe up, Governor Cuomo! It's high time.
If you haven't already, watch the PBS clip where I tell the story of meeting a woman who was spared my fate (late stage diagnosis) because she saw an episode of Oprah here (fast forward to 16:34).

Here is the whole text:

My name is Hallie Leighton. I am 41. My story was told in a CNN article called “When a Mammogram is Not Enough.” I was diagnosed with Stage IV breast cancer at age 39. Stage IV is the “Elizabeth Edwards” stage. It means that the cancer has spread to distant locations—in my case the spine--and is thus incurable. When physicians talk about patient anxiety from unnecessary breast biopsies, I want to tell you that it is nothing like  the anxiety of waiting for spine biopsy results because doctors suspect your cancer has spread, then getting the news that you tested positive for metastatic breast cancer. It's nothing like the anxiety that results from being told your cancer was there a year earlier and radiologists didn't spot it because of dense tissue.

Not long after my diagnosis, I was waiting to see my oncologist when I struck up a conversation with a woman my age whose cancer had been detected at an early stage. She told me her cancer had not been detected by mammogram, but by sonogram. I asked her how her doctor knew to order a sonogram. She said seen an episode of Oprah that said to ask your radiologist if you had dense breasts and to request a sonogram if you did.

This woman had been spared my fate, the clinical equivalent of death row, and all because she watched Oprah.

According to statistics, my chance of being alive in five years after initial diagnosis is one in six. I have three years left. It’s like Russian Roulette with five of six chambers loaded. I felt betrayed by my radiologist and my gynecologist for not telling me what Oprah told this woman, which is that if you have dense breasts, finding cancer on a mammogram is like spotting a polar bear in the snow.
A supporter of the breast density bill called his Assemblyman (Bill Reilich, Republican, Greece, NY), to ask him to support the bill. The office person he spoke to explained why Reilich has thus far not supported the bill:
"...the office of Bill Reilich told me that Assemblywoman Jaffee 'often' won't allow Republican senators to put their names on her bills."
Can we please not hold women hostage as petty partisan political payback for perceived slights? This joint assembly/senate bill is sponsored in the senate by Republican Senator John Flanagan, and could not be more bipartisan. It has numerous co-sponsors from both sides of the aisle in both houses. The bill simply requires that radiologists inform women of their breast density so that women with unreadable mammograms can discuss additional screening options with their physician and have access to additional screening if necessary. Assemblyman Reilich, breast cancer affects women of all political leanings. This is it's not the ideal bill to grind your axe on, so please put it aside and support this bipartisan bill.

Saturday, June 2, 2012

ACOG, Curb Your Enthusiasm

My first trip to Albany was intense but a little somber. I had expected to finally meet Teresa Lacey Montant, a fellow breast density advocate with whom I had been corresponding, but instead met her widower.  Under these tragic circumstances, the mood was slightly subdued. As our small group trudged from office to office of New York assembly members, Mr. Montant carried a mounted tennis ball that was smaller than the tumor his late wife had discovered three months after a normal mammogram, the tumor obscured by dense breast tissue. He explained this to shocked and sympathetic assembly members. Each survivor-advocate expressed our desire to spare other women from the nightmares we were experiencing due to unnecessary late-stage diagnosis. All this is a way of saying that although we are a buoyant group, our meeting decidedly un-festive. Support or oppose the legislation, no one would find this bill an occasion for fun and laughter.

Or so I thought. 

Two weeks after our trip, The American College of Obstetricians and Gynecologists (ACOG) sent a delegation of doctors to Albany to lobby against the life-saving legislation--and the mood was quite different. This is how ACOG described it in their newsletter:
ACOG LOBBY DAY 2012: SUCCESS, SURPRISES & SMILES
...Lobby Day 2012 also provided a few surprises – and a lot of smiles. Assembly members and senators were more than happy to discuss proposed “dense breast” legislation (S.6769-A/A.9586-A) – but you should have seen the shocked look on their faces when our members explained that we were opposed to the bill....
(Not hard to imagine the shock. You see, we had been there two weeks prior explaining to the same legislators how the Connecticut law this bill is modeled on had doubled the cancer detection rate for women with dense breasts who received follow-up screenings. Why would ACOG oppose this?)

Later, the newsletter continues:
There was clearly a Lobby Day 'camaraderie' shared by our members. In fact, during lunch, the laughter from one of our tables could be heard throughout the Capitol Deli."
Wow. These doctors lack even a basic sense of decorum, let alone empathy. They made no attempt to contain their merriment as they lobbied for the right to continue harming patients by withholding material medical information. They even bragged about what an uproarious time they had lobbying against a bill spearheaded by late stage breast cancer survivors and their surviving family members that ACOG members had harmed by withholding information. It did not even occur to their communications manager that writing about it this way would be inappropriate.

For ACOG, Lobby Day was like a field trip to to Disneyland.

Could there be a more literal example of adding insult to injury?

ACOG's talking points against the legislation are here. I already exposed the rank hypocrisy of one of their arguments in my last post. Believe me, the rest of their points are every bit as specious. Are You Dense Advocacy responds, point by point, here. However, there were eight of us lobbying, and seventeen of them, and they were a healthier group. They boast that they met 90% of legislators face to face. Despite our energy we only were able to meet a fraction of the assembly. That's why I urge you to use the link at left to find and contact your state senator and assembly person if you live in New York.

Here is a picture of Teresa Lacey Montant, the density advocate who never made it to Albany. Here's her story.
Her husband continues her advocacy work while he struggles financially after losing her health insurance (and income).

Here are the names of the laughing lobbying doctors:

Matthew Blitz, MD
Ana Cepin, MD, FACOG
Eva Chalas, MD, FACOG, FACS
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
Mary Ann Millar, MD, FACOG
Howard Minkoff, MD, FACOG
Allen Ott, MD, FACOG
Lawrence Perl, MD, FACOG
Hartaj Powell, MD, FACOG
Mary Rosser, MD FACOG
Naomi Ufberg, MD
Ronald Uva, MD, FACOG
Mary Margaret Wilsch, MD, FACOG

Have they no shame?

Update: if anyone happens to have/obtain a photo of the raucous Capitol Hill Deli lunch, leak them to me at "s [at] womanhattan [dot] com".  Communications will be kept confidential.