Breast Density: State of the States

By JoAnn Pushkin

Twenty seven states, encompassing nearly 70% of American women, now require some level of breast density reporting to a patient after a mammogram. In fact, only 9 states have not endeavored to address either density inform or education in some manner through legislation. Click here to view an interactive map which provides legislative analysis of state-by-state density inform laws and insurance coverage.

Even where breast density inform legislation is in effect, there is wide variability in what is required to be told to a patient. Do you know what is required in your state? Though some state breast density inform laws are similar to each other, there is no consistent language utilized across the states. Every state that drafts a bill develops its own language.

As a result of inconsistent notification laws, women living in neighboring states may get very different levels of notification. A good example is the New York, New Jersey, and Connecticut “tri-state” area. It would not be uncommon for a woman who lives in NJ or CT, but works in Manhattan, to get her routine mammogram during her lunch hour. As we see below, the level of notification she’d receive if she had her imaging exam done in NY would be different from what she’d receive if she had her imaging exam done in her home state.

As you can see, in New York, women with heterogeneously or extremely dense breasts receive clear, unambiguous notification that their “breast tissue is dense.” In Connecticut, women with heterogeneously and extremely dense breasts receive notification that reads, “If your mammogram demonstrates that you have dense breast tissue…” and goes on to provide general info about breast density without any information about their personal breast density. And in New Jersey, all women are told, even if they are known to have fatty breasts, that their mammogram may show that they have dense tissue without any information about their personal breast density.

Notifications such as those in CT and NJ can be particularly lacking in relevance if the imaging center where the woman has her mammogram “batch reads” (when exams are read in a batch, typically after the patient has left) the screening examinations. This is a typical practice at the vast majority of imaging centers. In this instance, the patient has left the facility having had no interaction with the radiologist, and her only communication about breast density is contained within the lay letter; which, by MQSA requirement, may be received as long as 30 days after the mammogram. This patient has not received any communication, either in person or in her letter, about her personal breast density.

Insurance coverage for supplemental screening also varies from state to state. Extension or denial of coverage should not be assumed and two of the most common questions we are asked are:

Q: If there is a state insurance law, are all women covered?

A: NO. A state insurance law does not necessarily apply to all policies within the state. For instance, employer plans set up as “self funded” (check with company benefit administrator) do not, generally, have to comply with state insurance laws. Further, national insurance providers may be exempt from state laws.

Q: If there is no state insurance law, might supplemental screening be covered?

A: YES. While some states have some level of insurance coverage (see interactive map) generally, in other states, an ultrasound (or an MRI for high-risk women) will be covered, subject to deductible/copay, if ordered by a physician.

New York’s Gov. Cuomo recently signed the most comprehensive expanded insurance law (Chap 74) for the detection of breast cancer. Beginning in January 2017, New York will become the first state to require coverage for no-cost (no copay, no deductible) mammography, supplemental screening, and diagnostic imaging. One caveat, again, is that employer insurance plans organized as “self funded” are exempt. It is prudent to always check with the insurance carrier about coverage.

All women across the country should receive the same level of information about their breast density. After my work initiating New York’s density inform law, I pursued initiatives at the federal level with the hope of creation of a single federal standard. Both federal legislation and regulatory efforts to address the issue are underway. The Breast Density and Mammography Reporting Act, introduced by Sens. Feinstein and Ayotte, currently has 24 sponsors. And, I have just provided testimony, for the second time, on why a national standard is needed at the September 2016 meeting of the National Mammography Quality Standards Act Advisory Committee. For more information on efforts for a federal standard, click here.

To address the unmet educational need of women and referring doctors in the context of density notification, I have co-developed – with breast imaging expert Wendie Berg, MD, PhD and mammography technologist Cindy Henke-Sarmento – a medically sourced, educational website DenseBreast-info.org. It contains separate data tracks for both patients and healthcare providers, and, among other components, includes an interactive map which provides legislative analysis of state-by-state density inform laws and insurance coverage (see below).

JoAnn Pushkin is executive director of DenseBreast-info, Inc., a 501(c)(3) public charity that supports DenseBreast-info.org, a web-based resource which provides breast density information to both patients and health care professionals. She can be reached at JPushkin@Dense-info.org.