Q&A: Joseph J. Cappello on the 15-year fight for a federal breast density reporting law

When President Donald Trump signed a federal funding bill into law on Feb. 15, ending concern over another government shutdown, it included a requirement that all mammography providers include information about breast density in reports sent to patients and their physicians.

Nancy M. Cappello, PhD, played an instrumental role in getting this new federal requirement signed into law, pushing for such legislation to be passed for many years. After being diagnosed with breast cancer in 2004, she founded Are You Dense, Inc. and Are You Dense Advocacy, Inc. two nonprofit organizations focused on educating the public about the importance of breast density. She also helped guide the passage of separate breast density reporting laws in 36 states, working tirelessly on this mission until November 2018, when she passed away due to complications from myelodysplastic syndrome (MDS).

Radiology Business reached out to Joseph J. Cappello, Nancy’s husband, to discuss the passage of this new federal regulation. Joseph worked side by side with his wife to educate the public and make breast density notification laws a reality. He was recently named the new executive director of both Are You Dense, Inc. and Are You Dense Advocacy, Inc.

Was it difficult for you to become executive director of these two nonprofit organizations? Or did you know you wanted to continue the work you and your wife had already done on this important issue?

A lot has happened in the last six months regarding the treatment of my wife’s condition of MDS and her eventual passing in November. This alone would be enough for one person to absorb. First, you are numb and your mind races about all the questions you have. Through a natural instinct of keeping the nonprofits going, I immediately began to work every day to make sure the transition, if there was to be one, was seamless. I don’t think there was ever a time when I made a decision to take over Are You Dense, Inc. or Are You Dense Advocacy, Inc., since Nancy and I had worked together on that mission for 15 years.

About three weeks after her passing, the board of directors for both groups voted me as the new executive director. I will never replace Nancy. She worked harder, was smarter, and had a bigger personality than anyone I know. I can only do the best I can to communicate our mission.

What are your responsibilities in these positions? What are your goals?

I have a responsibility to be the finest representation of our nonprofits that I can be. It is my job to convey to the public a sense of mission and the thoughts and concerns of our board members. I do not take this responsibility lightly. I never stop being amazed at the impact Nancy had on the public. On a daily basis, I get requests for Nancy to speak, requests for advice and media requests. I return all calls and emails myself and make sure everyone is treated with the greatest respect.

My goal for 2019 is to make sure the public is aware that the national dense breast tissue disclosure law was just passed last week. Are You Dense, Inc. will kick into education mode.

As you just mentioned, when President Donald Trump signed the recent funding bill into law, it included a federal requirement for mammography providers to inform patients and their physicians about their personal breast density and what that means for their health. After working so hard for so long to get such legislation passed in 36 states, how did it feel when you first heard about this?

This information first brought tears to my eyes, knowing how difficult it was for the past 15 years to fight an uphill battle against very strong powers that be. Yet we prevailed. Then I thought about my wife, wishing she was here with me to share the good news. It is still difficult to believe, and until I saw it in writing from Sen. Dianne Feinstein’s office yesterday, a portion of me remained a bit skeptical. I have to admit that it is a little bittersweet.

How do you think this federal bill will impact the breast density legislation already signed into law in many states?

It will take some time to enact the legislation and educate providers about how the new law affects their process. This is the most difficult part going forward.

As for the 36 existing state breast density laws, their language will change to the new federal language for all 50 states. The only difference would be that a state may want to make their law even stronger than the federal law—but it cannot make it weaker.

The FDA is said to be responsible for developing the language of these breast density notifications. How do you think they should approach that task?

The FDA, Sen. Feinstein, Nancy and other advocates had been working on regulatory language for at least seven years. Nancy had also been working on congressional law language for longer than that. This law has been approached in every direction possible. The language that everyone has agreed on is the best possible solution to a very serious and urgent problem, the disclosure of breast density, and what it means to the patient.