Advocates continue to fight for the cause behind California’s vetoed breast cancer detection bill
Nancy Cappello never imagined that she’d one day spend her time talking to strangers about her breasts. She also never expected to get breast cancer—she was a dutiful recipient of annual mammograms that routinely came back “normal,” after all—but somehow that happened, too.
In November 2003, Cappello once again received normal mammogram results that included “no significant findings.” But less than three months later—thanks to her gynecologist, who felt the lump during a standard annual exam—Cappello was diagnosed with stage three breast cancer. The cancer had traveled outside of her breast to her lymph nodes, 18 of which were removed and 13 of which contained cancer. Just a matter of weeks after her uneventful mammogram, she underwent six surgeries, eight chemotherapy treatments, and 24 radiation treatments.
When she inquired as to why her late-stage cancer hadn’t been detected earlier, Cappello was informed that she has dense breast tissue, and that dense tissue can obscure findings. Both cancer and dense tissue show up as white areas on mammograms, however this information is rarely shared with patients.
“I was outraged that no one had ever told me that I had dense tissue,” Cappello says. “That’s when I pledged that I was going to do something about this for other women.”
Throughout her cancer treatments that summer, Cappello fought for legislation in her home state of Connecticut that would fix this disconnect. In the process, she founded a 501c3 nonprofit called Are You Dense? that raises awareness about dense breast tissue and promotes early detection. The group was eventually successful at getting two first-of-their-kind laws passed in Connecticut: a breast density insurance bill in 2005, which required that other breast cancer detection screening methods be covered by insurance, and a breast density notice bill in 2009 that requires mammogram results to state whether a patient has dense tissue.
Are You Dense? was an active proponent of California’s breast density bill, SB 791, which was authored by Sen. Joe Simitian and presented to the legislature over the summer. Although it received broad bi-partisan support and passed the state senate with only one naysayer and the assembly 66 to six, Gov. Jerry Brown vetoed the bill on Sunday, Oct. 9. The decision came as he rushed to get through hundreds of bills leftover from the recently ended legislative session by his midnight, Oct. 9 deadline.
SB 791 came to be thanks to a Santa Cruz County woman named Amy Colton, whose own story closely resembles Cappello’s. Despite years of routine mammograms and “normal” results, Colton was only informed of her density after she completed treatments for breast cancer. The Soquel resident and registered nurse submitted the breast density inform bill in Simitian’s annual “There Oughta Be a Law” contest.
Colton and Cappello’s experience is not unique: According to the American College of Radiology Imaging Network (ACRIN), 40 percent of women receiving mammograms have dense breast tissue and these women are five times more likely to develop breast cancer. Yet, a January 2011 Mayo Clinic study found that 75 percent of cancer is missed in women with dense tissue through mammograms alone. The primary cause of “false-negative results” in mammograms is high breast density, according to the National Cancer Institute.
Under current federal law, radiologists must note a patient’s breast density when reporting mammogram results to the referring physician. The law also requires radiologists to send patients a letter with their mammogram results—but this letter does not include information regarding breast density, or that the presence of dense tissue could render the mammogram inconclusive.
“It has been recognized since the beginning of mammography that dense breast tissue can obscure breast cancers, making them difficult to diagnose,” says Kenneth Averill, medical director of Dominican Breast Center in Santa Cruz. “[However], it should be noted that even in patients with extremely dense tissue, mammography has value in detecting early cancer.” Dominican Breast Center conducts around 13,000 mammograms a year, 93 to 95 percent of which return “normal” results.
The veto came as a big disappointment to Simitian, whose district includes Santa Cruz. “I’ve been in the legislature for more than a decade now, and I’ve gotten vetoes before, but this one was a heartbreaker,” Simitian tells GT. “This bill was a life saver. It’s an opportunity lost.”
Gov. Brown cited the wording as cause for his rejection, siding with major physicians groups who opposed the bill because it could “cause panic” among women with dense breasts. In his Oct. 9 veto message, the governor wrote that, while he supports everyone’s right to information about their own health, he “struggled over the words. Were they a path to greater knowledge or unnecessary anxiety?”
Simitian recalls hearing the anxiety argument made by the California Medical Association during hearings and debates, and feels it is “at best patronizing.”
“Our opposition acknowledged that yes, the risk is higher for women with dense breast tissue. Yes, they aren’t as well served by mammograms. And yet we continued to get the argument that somehow patients couldn’t handle the truth,” he says.
Colton, who declined an interview with GT, promptly sent a public letter to Gov. Brown in response to his veto. “In your veto message, you cite the ‘unnecessary anxiety’ that breast density notification would cause,” she writes. “I ask you for a moment to consider the ‘anxiety’ of a late stage cancer diagnosis. As if that isn’t devastating enough, imagine learning that your cancer might very well have been detected at an earlier stage had you received notice that you have a condition that masks breast cancer. There is no comparison between the speculated ‘anxiety’ that breast density notification would cause and the ‘anxiety’ of a late stage cancer diagnosis.”
But despite its failure to pass, the bill did succeed at raising awareness about breast density. Averill, of Dominican Breast Center, has seen increased interest about density among Santa Cruz women. “From a local perspective, the new level of awareness of this issue brought about by Amy Colton’s efforts has lead to numerous patients inquiring about their own density pattern and so far these have been addressed on an individual basis,” he says.
The fight to legislate this is not over, either—Simitian says to expect another bill next year. Proponents are open to negotiating the wording, he says, but only to an extent. “I’m not interested in some boiler-plate language that gets buried in the bottom of a form that doesn’t communicate meaningful information to a patient, but if we can find something that satisfies the governor and still communicates crisply and clearly to patients, then I’m open to some wording that would do that,” the senator says. “We will keep trying.”
Similar legislation is springing up across the country: breast density inform bills will be introduced in a half dozen states in 2012, and the federal Breast Density and Mammography Reporting Act (HR 3102) was introduced on Oct. 5., thanks to the efforts of Are You Dense?
“We don’t want a woman’s zip code to determine her access to this information,” Cappello says of the federal bill. “If a woman in Connecticut has a mammogram this week, she’ll hear about her density. But the women in California are depending on luck—the luck of having a good doctor who will talk to her about it.” Ninety-five percent of women don’t know their breast tissue density, and less than one in 10 doctors inform their patients of such information, according to a May 2010 survey conducted by Harris Interactive.
In the meantime, in addition to the usual letter they receive, Cappello suggests that California women request a copy of the report radiologists generate for their doctor. “When I ended up asking for my report, I had a decade of reports that said ‘patient has extremely dense tissue,’” Cappello says. If a woman’s report does indicate dense tissue, she recommends discussing risk factors and screening options with one’s physician.
For Simitian, it’s only a matter of time before California gets on board. “I believe a decade from now we will … look back and say ‘can you believe there ever was a time when women were denied this information?’” he says. “But every day longer we have to wait to make this information available to the patient is a day patients are put at risk unnecessarily.”
Photo captions: 1. Survivor stories Breast cancer survivor and founder of Are You Dense? Nancy Cappello, speaks in Sacramento in support of SB 791, a breast cancer detection bill authored by Simitian that was vetoed in October. 2. Nancy Cappello Photos: Are You Dense