What a Difference a Decade Makes: The First Breast Density Law in Connecticut Ignites the Grassroots Movement for Breast Screening Justice - from Zero to 35 Laws in 10 Years

The year was 2008.  My husband Joe and I relentlessly advocated for a breast density reporting law in our home state of Connecticut after my advanced-stage breast cancer diagnosis stunned us four years earlier, despite my years of annual mammograms. My cancer, in addition to metastasizing to 13 lymph nodes, was nearly 3 times the size it should have been if found by mammogram, yet year after year the results of my mammogram reported as ‘normal.’   

It was gut wrenching when my stage 3C breast cancer indicated that less than 49% of women survive 5 years. Despite decades of studies published in medical journals, I never knew that my dense breasts put me at risk of a missed, delayed and advanced cancer in addition to being at risk of being diagnosed with breast cancer.  It was after my starling diagnosis, as I questioned my health care providers as what happened to the promises of early detection, that it was revealed to me to that my dense tissue caused the failure of my mammogram to miss my cancer for years.  It was a devastating blow that my dense breasts and its potentially life-stealing impact, while known by my health care providers, was hidden from me and the 40% of women with dense breasts.

Joe and I were glued to the televised proceedings as the last few days of the legislative session were ending as we waited for our dense breast reporting bill to be called by the Speaker of the House for a vote.  Our hearts were racing as we got closer to the midnight hour when the session would end.  It was three months earlier that our bill, which languished for several years, received a public hearing.  We were relieved that my story of breast screening injustice, which mirrored the long lineage of science representing innumerable women in Connecticut, would finally be told. As we signed in to testify under the ‘support’ column, my eyes doubled in diameter as I read that a doctor, representing the Connecticut Society of Radiologists, was listed under the ‘no support’ column. I was stunned that an organization representing Radiologists was in opposition of giving patients/consumers of mammography screening information leading to informed conversations between patient and provider that could make the difference between an early and later stage diagnosis.

We were extremely grateful that radiologist Dr. Gary Griffin joined us at the Hearing to support the legislation and report his data.  Dr. Griffin contacted me months after we passed our insurance coverage law in 2005 for added ultrasound screening for women with dense breasts and shared his compelling data. His radiology practice was nearly doubling the number of invasive breast cancers, invisible by mammogram, yet seen on ultrasound in women with dense breast tissue. His testimony, based on his clinical data from his practice representing Connecticut moms, wives, sisters, and daughters in real time, would tell the real story of reduced sensitivity of mammography in finding cancers in dense breast tissue and the utility of increased invasive cancer detection with the added ultrasound.  And so the showdown began.

There was more drama than a Shakespearean tragedy as Dr. Griffin's testimony followed the Society’s opposing testimony presented Dr. Jean Weigert.  Dr. Griffin testified that, as a member of the Society, he and his radiology colleagues were never contacted to weigh in on the density reporting bill’s merits. He reported his data of masked cancers on mammogram because of dense tissue and subsequently seen by ultrasound, exchanging a potentially advanced interval cancer diagnosis with an earlier one. It was clear as the testimonies continued that the members of the committee were in the people’s corner and rejected the weak reasons as to why a woman’s dense breast tissue should not be disclosed as part of her mammography reporting results. These same claims are still being used as we continue to face opposition from physician trade organizations about density reporting laws.

                                            Dr. Gary Griffin receives the Champion Award for Exposing the Best-Kept Secret                                      

As the session drew to a close, after negotiating the language of the bill with the opposition, the bill cleared the Senate and was waiting in the Assembly line-up of bills. To our dismay, the session ended without our bill being called.  We were devastated.  We had two choices – fall under the weight of the defeat or to learn from it and come back stronger and smarter.  We chose the latter.   

By the opening of the next legislative session, we acquired an IRS recognized 501(c)(3) nonprofit, Are You Dense Inc., and launched a viable website in 2008, a few months after our defeat, which led other women in Connecticut to us as they illuminated their common story of delayed diagnosis despite never missing a mammogram. It was the spring of 2009, that the legislature passed the first density reporting law in the nation which ignited the density reporting movement.

Governor Jodi Rell's 2009 Landmark Breast Density Bill Signing into Law

As of today, 35 states have followed Connecticut’s landmark law, with the expectation that Illinois will soon become the 36^th state. Within the last decade, more studies have been added to our scientific arsenal to support the disclosure of dense tissue to women with its impact on the masking of cancer in addition to its moderate to high risk of breast cancer.  Our work continues as we standardize the reporting of dense breast tissue through the mammography report, giving women with dense breast tissue access to screening justice beyond the mammogram, to prevent advanced disease and improve survival outcomes.

My partner & husband Joe and I receive a recognition from James Ingala for our 10th Year of Are You Dense, Inc. & its Impact on Preventing Advanced Breast Cancer to Increase Survival Outcomes