Wednesday, June 6, 2012

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.

 Open Letter to the American Congress of Obstetricians and Gynecologists (ACOG)

Attn: Dr. Eva Chalas, District II Chair, American Congress of Obstetricians and Gynecologists (ACOG)

Dear Dr. Chalas:

Despite extremely dense breast tissue that obscures cancer on film mammograms by over 60%, my gynecologist did not recommend additional screening for me, disregarding even ACR/SBI guidelines. (Read my story on CNN.) I was diagnosed a year later (at age 39) with incurable Stage IV breast cancer. My gynecologist did not share with me the material medical information sent to her by the radiologist in a mammogram report that I never saw: "The breasts are extremely dense, which lowers the sensitivity of mammography." Instead, I received a letter from the radiologist that said: "We are pleased to inform you that the results of your recent breast imaging examination on 04/16/2009 are normal."

I'm not alone. A Harris Interactive poll from 2010 shows that 95% of women do not know their breast density.

So on May 1st I visited Albany for the first time to lobby legislators for a bill requiring that women receive breast density information that is routinely included in the report to their physician. This legislation is spearheaded by women like me who were similarly misdiagnosed, and could have been diagnosed earlier with improved patient/physician communication.

I truly do not understand how your organization could oppose this legislation, but support or oppose, no one could find this a laughing matter.

Or so I thought, until I read your newsletter:

...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....

...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."

So I have two questions:
1) What was so funny?
2) Do you think that it was acceptable that my gynecologist (an ACOG member) did not inform me of my extreme breast density or the clear necessity for additional screening?

Reporting on your lobbying visit as if it was a Six Flags field trip is extremely insensitive at the very least. Under the tragic circumstances that catapulted this bill into being, it smacks of adding insult to literal injury.

Dr. Chalas, ACOG owes an apology to all the late stage survivors who are advocating this legislation, as well as the families of advocates we have lost, and not of the "I apologize if you were offended" variety. A real apology.

Thank you in advance for your answers to my questions and your apology for your insensitivity.

Hallie Leighton

p.s. Your newsletter says:

"One of our members even brought her two children to Lobby Day. What a wonderful opportunity for them to see first-hand how their Mom is doing her part to give OB-GYNS a true voice within the halls of the NYS Capitol – and to witness the inner workings of our state government.

Do you think, Dr. Chalas, when those two children grow up, they will be proud when they realize that their mother was lobbying to continue to withhold material medical information from patients such as myself?

End Open Letter

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