In May 1991, I sat in a law firm conference room in Washington, DC, listening to a pitch from a small group of women who had the idea to launch a political advocacy movement around breast cancer. One of those women was Dr. Susan Love. The person next to me nudged me with her elbow and whispered, “She is famous. She wrote this unbelievable book.”
Though I had received a breast cancer diagnosis just four years earlier, I knew very little about the issue or the players—I just knew I wanted to do something about it. And it was very clear to me that day that Susan Love had the vision and the balls to make something big happen.
That was my introduction to Sue, and what was to become the National Breast Cancer Coalition (NBCC). For more than 30 years, I had the privilege of working with Susan to grow NBCC into a strong, powerful movement. But in May 1991, no one knew who NBCC was. The fact that Dr. Susan Love was part of NBCC’s launch gave it credibility among many and instilled fear in some.
Susan died of recurrent leukemia on July 2. She was 75.
Susan was never one to pull punches. She was fearless. Breast cancer revolved around mammography at the time, not so different from today. Sue questioned that and taught us to do the same. As others celebrated the next chemotherapy drug or new radiation equipment, Sue would give her famous line: It’s all still “slash, burn, and poison.” And that allowed patients to question the traditional treatments and wonder why it wasn’t changing.
Susan demystified breast cancer for the public in speeches, articles, media appearances, and most importantly through“Dr. Susan Love’s Breast Book,” the bible for women diagnosed with breast cancer. I have heard many women say they fell asleep clutching that book, after poring through it all day.
Susan knew women could absorb complex information about breast cancer—and she knew that they craved it. She gave them what they wanted and needed: the power of knowledge to understand what was happening to them, to know the right questions to ask their doctors, and to know they had every right to do so. Susan helped lead NBCC advocates into the world of science, as collaborators, with a meaningful seat at the table.
Sue had many innovative ideas—some of them pretty wild—and she never hesitated to act on them. She had the guts to say things others would not.
Early on, Sue pointed out the lack of evidence behind hormone replacement therapy and expressed concern about its safety, and that it might increase breast cancer risk. She was attacked over that. In fact, I clearly recall seeing an issue of The New Yorker with a cover flap touting an article asking “how wrong is Dr. Susan Love?”
Except she wasn’t wrong. Not long after, evidence was published supporting her position. Susan Love was, in fact, right. (This wasn’t always the case, of course. She was too innovative to be right all the time. And when she wasn’t right, she would smile, shrug, and move on to the next incredible thing.)
After the publication of the first edition of “The Breast Book,” Sue spoke to a group of, in her words, “older” women in Salt Lake City. She felt her speech was going on too long and was a bit ponderous, so to lighten things up, she suggested they all go to DC and march topless to the White House demanding attention to breast cancer. Sue waited for the laugh, but what she got was a resounding “Sign us up!”
She said she knew at that moment it was time to organize and get political. At the same time, Susan Hester, the founder of the Mautner Project for Lesbians with Cancer, was thinking the same thing. Together, they reached out to groups they knew, which led to the May 1991 meeting and the founding of NBCC. And that led to the Department of Defense Breast Cancer Research Program (DOD BCRP), the CDC Breast and Cervical Cancer Treatment Act, NBCC’s Project LEAD®, and so much more.
One of NBCC’s longtime advocates used to work with Susan at the Faulkner Breast Center, which Susan founded. She told me when Sue came back from that May meeting, she had a huge smile and said, “We are going to end breast cancer for the future, and I think you are going to want to come aboard.”
NBCC likely would not exist if it were not for Sue Love.
She spoke to thousands of women everywhere, giving them the courage to help themselves and others. And she would always tell her audience to become part of the movement. Over the years, Susan remained loyal to NBCC. The Faulkner Breast Center was one of the first NBCC groups, and when she launched the Susan Love Breast Cancer Foundation, that organization joined NBCC’s board.
Susan’s network of doctors and researchers, most outside the traditional thought-leader groups, came along with us when she asked, because she asked. As NBCC developed a plan for the research needed to support our “$300 Million More” campaign that led to the creation of the DOD BCRP, Sue pulled in her network to help us develop it.
When she and I attended a science workshop by a large professional association, I vividly recall Susan and I sitting around during a break, planning our own meeting, so we could question the traditional approach we were hearing.
That led to the NBCC’s Aspen Project think tank meetings, which led to The Artemis Project, which led to the development of a preventive vaccine that will soon begin a phase I trial. Susan was there for all of it.
She was serious about ending breast cancer, but didn’t take herself seriously. Sue was irreverent, funny, and fun. In the introduction to the second edition of “The Breast Book,” she discussed how much had changed, and described having to add chapters and edit all but one, the first on anatomy—“The breast, I’m glad to report, is still located on the chest!”
When NBCC started holding advocacy conferences in Washington, DC, for members from across the country, Susan said we had to celebrate ourselves. And so, we hired a DJ, and on the final night of the meeting each year, Susan would lead us onto the dance floor, where we would all wildly dance.
She loved fine wine, dancing, meeting people, and helping others. She was a techie, an early adopter, and very early on, with advocate Pat Barr, pushed NBCC to get on board with email, which most of us thought would never catch on. Ok, so once again, Susan Love was right. She’s smiling.
Susan Love leads a conga line at the the 2004 NBCC Advocacy Training Conference.
Sue began to develop a handheld device for use in rural areas and underdeveloped countries to figure out if a lump was a cyst or a problem; it is now being tested. On a phone call once, she told me she had to run, because she was meeting with NASA about yet another idea.
When many lamented the fact that not enough women were enrolling in research studies, Susan created the Army of Women (now Love Research Army), so people could sign up to do just that. After an appearance on Good Morning America, almost 300,000 people said yes.
It is rare, but there are times some of us are lucky enough to know and work with an individual who is transformative. Someone who intuitively understands the right thing to do and then just does it. That certainly was Susan. Research, policy, healthcare, activism… it all changed in breast cancer in response to her initial vision.
These past few days, I have been going back over my past emails from Susan. I could never publish some of them, but sure wish I could. In one of her more recent messages to me, not long after she learned her leukemia had recurred, she spoke about her work with NBCC and ended with this:
“We have certainly had a great run.”
Without Sue, we would still be crawling. Thank you, my friend.
Frances M. Visco, JD, is the President of the National Breast Cancer Coalition.
