Virginia, Utah Join States Considering Breast Density Notice Laws

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A growing number of states are considering new laws that require radiologists to notify women of their breast tissue density as part of a routine mammogram.

Studies show cancers are less likely to be detected in dense breast tissue. Although physicians have known about the issue for years, relatively few women are notified when they receive a mammogram.

Connecticut became the first state in 2009 to pass a law that urges women with dense breast tissue to consider additional screening such as ultrasound or MRI. The law came about following the experience of Nancy Cappello, who received a diagnosis of Stage 3 breast cancer even though mammograms came up negative. 

Cappello went on to found the non-profit Are You Dense?, which advocates for similar mandates in other states as well as federal bill currently introduced in Congress. 

“Typically, women that have later stage cancers are shocked, and they end up looking for information about dense breast tissue on the Internet,” Cappello says. “For the most part it’s the first time they have ever heard about breast density. We want to make sure that however the bill ends up it’s a bill to mandate the communication of breast tissue density to the patient.”

So far Connecticut and Texas are the only states to pass laws forcing notification. Connecticut also passed a law mandating insurance coverage for the subsequent ultrasound or MRI. 

Bills are currently being considered in Utah, Virginia, New York, New Hampshire, New Jersey, Pennsylvania, Tennessee, Kansas, Missouri and Nebraska with legislators in several other states in the drafting stages. 

The California legislature passed a similar bill last year only to have it vetoed by Gov. Jerry Brown. Several medical groups, including the California Medical Society, opposed the bill, and the California chapter of the American College of Radiology maintained a neutral position.

Carol Lee, MD, chair of the ACR breast imaging communications committee, says the ACR is supportive in general of notifying women of their breast tissue density. It’s the wording of the particular language used to alert patients that becomes contentious, Lee says. 

“The ACR thinks it’s reasonable for women to know what their breast density is,” Lee says. “What you do with that information in any individual case is still a question. Where we have a problem is when the language goes on to say a woman should have additional screening. We think a better approach is that it should generate a discussion with the woman’s healthcare provider.”

There are possible fears of driving over-utilization. Ultrasound screening also generates more false positives than mammography and therefore more unnecessary biopsies. A study presented at RSNA 2011 showed the positive predictability of biopsy from ultrasound was 5-6% as opposed to mammography, which was 25-30%. 

The other concern is that it may have the effect of diminishing the confidence of mammography, Lee says. 

“We in the breast imaging community are struggling with repeated attacks on screening mammography which has been proven over and over again to reduce mortality from breast cancer,” Lee says. “Here we have legislation that is going to increase screening that is associated with even more false positives and benign biopsies without the demonstrated proof that it reduces mortality.”

Cappello argues there is a decade of research on ultrasound detection of breast cancer through dense tissue. 

“I was shocked to find at least six major studies that showed if you take an ultrasound and add it to a mammogram you increase the chance of catching the cancer by 96 percent,” Cappello says. “If you have dense breast tissue and only receive a mammogram the likelihood of finding cancer is less than 50 percent.”  

Cappello and her group last year petitioned the Food and Drug Administration to require physicians to include breast tissue density information as part of the report mandated under the Mammography Quality Standards Act. An advisory committee to the FDA agreed but it may still take several years for it to take effect, Cappello says. 

Meanwhile, advocates for federal legislation are backing House Resolution 3102 with 26 co-sponsors. So far, the bill has yet to receive a hearing.  

“In a perfect world it would be wonderful to rely on doctors to inform women of their breast dense tissue, but that’s not happening,” Cappello says. “And I don’t know how long we have to wait for that to happen.”

For a map of states that are