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.

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