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.

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.

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!

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.

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.

As I mentioned in my last post, health insurers—and legislators sympathetic to insurers—don't like the insurance requirement in S6769/A9586. They're trying to amputate that arm of the bill.

Even the American Congress of Obstetricians and Gynecologists (ACOG) claims to oppose the bill because it has an insurance requirement. They say it's unnecessary: "Currently, ACOG is unaware of cases whereby women are unable to get additional breast imaging if her physician believes the mammography result warrants further investigational study."

ACOG, you're about to get schooled. But before I school ya, let me tell you why ACOG's argument smells.

In California, similar legislation died last year (only to come back from the dead...only to be murdered at the governor's desk...only to be resurrected yesterday but I'll get to all this in another post.) The difference between the California bill and the New York bill is that the California bill does not have an insurance requirement.

The California Medical Association (CMA) fought hard against the bill last year because it did not require insurers cover additional screening. The chairwoman of CMA's legislative council, Ruth Haskins, complained that women requesting additional screening would end up frustrated because insurance wouldn't cover these screenings: "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."

So in California, doctors' orgs oppose the bill because insurance won't cover additional screenings, and that will frustrate women. In New York, doctors' orgs oppose the bill because it requires additional screenings and you can't prove that's necessary.

There's a saying for this: damned if you do and damned if you don't. In fact, there's a word for this: catch-22.

It's Kill da Bill, East Coast Style vs. West Coast Style.

The truth is, these doctors' orgs don't care if insurers cover additional screenings or not. (Note that ACOG is not arguing that the insurance requirement be removed from the bill; they just cite it as a reason to oppose the bill in its entirety.) ACOG would oppose this bill regardless, and will come up with whatever they can think of to oppose it.   Because this is all about control of information for them.  Doctors reflexively chafe at being told what to do by legislators. ACOG opposes requiring doctors to share vital information with their patients, even if doing so will save patients' lives.

(Note that there are good gynecologists and obstetricians out there. There are even good local orgs representing these specialties. However, their national organization stinks.)

But as long as they've put this bogus argument out there, let me address it. It's the same thing you'll hear if you call Assembly Insurance Chair Joe Morelle's office: do you know of a single case where a woman has been denied coverage for a screening sonogram? It's kind of a trick question, because at present there's no insurance code for a screening sonogram--only a diagnostic sonogram. That means if a woman has dense breasts and wants a sonogram, she (possibly with her doctor in cahoots) has to lie fib and claim there's an irregularity so she can get a diagnostic sonogram.

So we had no evidence that insurers wouldn't cover a screening sonogram because to date there's no such thing as a screening sonogram. We had nothing to give them.

Until a day ago. A lady in Poughkeepsie--and I don't know who she is or how we found her--had dense breasts and requested a sonogram. Her doctor ordered one. And her claim was rejected by her health insurer. She forwarded it to supporters of the bill.

This documentation was forwarded to Joe Morelle's office. Word on the street is that it was a hot topic of discussion in Morelle's office yesterday.  But not everyone in his office got the memo, because a constituent of Morelle's who called his office today was told "we have no cases of a woman being denied access to additional tests when the doctor has determined that they're necessary."

You do now.

Right now, we're so down to the wire that I will be relieved if the bill makes it out of Morelle's office at all, even if the insurance arm is amputated. We're really short on time here.

(That doesn't mean I will be happy. It will be a shame if the insurance requirement is removed from the bill--a shame on the insurance committee.)

However,  if the bill leaves Morelle's office with the insurance arm intact, we can thank that lady in Poughkeepsie...and the dumb bureaucrat who denied her sonogram claim. P.S. ACOG, you've been schooled.

Greetings. This is a blog about sausagemaking, as they sometimes call lawmaking.  It's actually about a particular sausage: bipartisan New York Bill S6769/A9586 (Breast Density Disclosure and Insurance) which is in the process of being both made and unmade in Albany. It's a bipartisan bill requiring that women with dense breasts be notified by mammographers that their breasts are difficult to read by mammogram, and that they should discuss additional screening options with their doctors. Right now, women with dense breasts are not informed that they are in danger of misdiagnosis. Women like Joann Pushkin, whose cancer grew for five years undetected by mammogram.

A similar law that passed in Connecticut has doubled the detection rate for women with dense breasts who received sonogram screening. So we know this bill will save lives of New York women.

In its current incarnation, the joint senate/assembly bill calls for insurance coverage for sonograms as a follow-up screening tool for women with dense breasts. (Health insurers are trying to amputate this part of the bill before it leaves committee. I will go into more detail in a subsequent post.)

The bill has broad bipartisan support. If it comes to a vote, it is certain to pass.

If. 

The bill may never make it to the assembly floor. There is less than a month left in the legislative session, and it's still stuck in committee, where lobbyists and legislators are quibbling over the language of the bill. Among them are people who would like to kill this bill without leaving fingerprints. They can do it by running out the clock. With all the procedural hurdles this sausage has to go through, it may not make it to the assembly floor. That's why I started this blog. This sausage can only be cured with some sunlight.

Right now the joint bill is stuck in Assemblyman Joe Morelle's office (he's the assembly insurance chair) and Senator James L. Seward's office (he's the state senate insurance chair). When will it leave Morelle's committee? Will it leave? Time is of the essence.

There are some heroines/heroes in this story: Republican State Senator James Flanagan (Senate sponsor), Democratic Assemblywoman Ellen Jaffee (Assembly sponsor) and their many colleagues from both sides of the aisle who have signed on as co-sponsors of this bill. Also, JoAnn Pushkin, the tireless driving force behind the New York bill. Like many of the advocates behind this bill (including myself), JoAnn is fighting for this bill's survival even as she fights for her own survival.

But there are villains in this story too. At the end of the month, we'll know who the biggest villain is. The winner will get the "boob of the month" award from this blog.

In the meantime, I have a lot to fill you in on.  So stay tuned.

p.s. New Yorkers, call your state senator and your assembly member and tell them to support the bill and that you want to see this bill pass this session. Find your state senator here and your assembly member here.