The Reading Room

How imaging leaders should respond to controversial breast density notification laws

by Lea Halim and Pooja Desai

Since Connecticut passed the nation's first breast density notification law in 2009, many other states have followed suit. As of today, 32 states have passed breast density notification laws, 12 of which were signed in the past two years alone.

Though notification laws are intended to increase transparency in women's health and improve access to alternative screening, the diversity of legislative requirements have left many questioning how they can be improved.

Why should women be notified about breast density?

Dense breast tissue can make it harder to evaluate the results of a mammogram and may be associated with an increased risk of breast cancer. According to "Are You Dense," a breast density notification advocacy group, mammography misses every other cancer in women with dense breast tissue. With approximately 40% of women having breast dense tissue, the probability of an ineffective mammography exam is certainly not slim. According to the National Institute of Health and the American College of Radiology, breast density is one of the strongest risk factors of breast cancer—even stronger than having two direct relatives with the disease.

Advocates of notification laws believe that awareness about breast density should be brought to a woman's attention early to allow for informed conversations with physicians, including alternative screening mechanisms, which can increase detection of early stage invasive breast cancer among women with dense breast tissue by 100%. By failing to enact life-saving screening protocols for women with dense breast tissue, cancers are detected at a later stage, creating fewer treatment options and worse survival outcomes.

What does breast density notification legislation entail—and what's the controversy?

Critics of breast density notification laws cite their lack of uniformity on a national level. Though the majority of states that have passed such laws require a letter to be sent to the patient, the letter itself, and the patients receiving the letter, vary greatly.

Some states, such as California and New York, require physicians to send letters to all women who recently received a mammogram, notifying patients if they have dense breast tissue, the specific category their breast tissue falls into, and what next steps they should take.

But other states, such as Louisiana and Missouri, take a more controversial approach. They require sending a letter to all patients—regardless of whether they have dense breast tissue. These letters often begin with "If your mammogram demonstrates that you have dense breast tissue, which could hide abnormalities... you might benefit from supplemental screening tests." Such vague language often leaves women wondering why they received the letter, whether they in fact have dense breast tissue, and what steps they should take next. Furthermore, some states only require letters to be sent to women with 'extremely dense' breast tissue, leaving notification of all other forms of breast tissue up to the physician's discretion.

Further controversy around legislation also lies in how messages are delivered to patients. Many worry that sending letters to patients without appropriate discussion incites more anxiety than intended. "The manner in which the information is shared is important," Richard Frank, MD, PhD, chief medical officer for Siemens Healthcare North America told Diagnostic Imaging in a 2016 article. "There might be value in not just sending a letter through the mail, but giving it to her. She then has an opportunity to actually talk about it."

What should imaging leaders expect?

Breast density notification laws are certainly here to stay, and states that have not yet adopted legislation are likely to do so in the coming months and years.

Imaging leaders in states that have adopted legislation should investigate and discuss the language required by their state with members of the senior leadership and radiologists. If states have adopted policies with obscure and vague language, imaging leaders should consider the benefits of proactively modifying these letters and requiring face-to face-discussions to provide more helpful feedback to women.

In states that have yet to pass breast density notification legislation, imaging leaders should consider what changes would be necessary to best accommodate letter creation and discussion and whether their screening team would like to proactively adopt these policies prior to state requirements.

Despite their flaws, breast density notification laws are spirited by the goal to improve women's health, and imaging leaders across the country have a pivotal role in how effective the legislation can be.

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