When Susan Love joked that a group of breast cancer advocates in Salt Lake City should march topless to George H. W. Bush’s White House, she didn’t expect to be taken seriously.
“When we said, ‘We should march topless on the White House,’ they were ready,” Love, founder and chief visionary officer of the Dr. Susan Love Foundation for Breast Cancer Research, said to The Cancer Letter. “The idea of all these topless women marching on the White House was enough to launch the breast cancer advocacy movement.”
It was June of 1990, just after Love published her book, Dr. Susan Love’s Breast Book, which walks its readers through the radical changes in the science of breast cancer at the time. She was on a book tour that landed her in Salt Lake City, where around 600 people showed up to hear her speak.
“What I really learned when we were at this meeting in Salt Lake City, is if you have the right answer at the right time, people are ready. They were ready to do something,” she said. “It was a time when we had science, and we had the NSABP doing research and randomized trials, and we could start to change how we treated breast cancer based on data, which was really something new and novel.”
The science and the culture of breast cancer activism was changing.
“We had a randomized controlled trial comparing wide excision or lumpectomy and radiation, to mastectomy. The fact that women were willing to be randomized as to which they got, by itself, was pretty remarkable,” Love said. “It turned out that lumpectomy or wide excision, followed by radiation, was just as good as mastectomy, much to everybody’s amazement.”
Breast cancer advocacy of earlier years—marked by building awareness, something critics called “pinkwashing”—was less political and not nearly as confrontational, Love said
The AIDS activists had inspired a new kind of activism, and breast cancer activists took note. The National Breast Cancer Coalition, an umbrella group that revolutionized the goals and tactics of cancer patient advocacy, was emerging, Love said.
“This was, ‘We want to be at the table. We want to be making the suggestions and making sure they happen, not just marching around wearing pink,’” she said. Also, most of these activists were not physicians or scientists, or involved in treating or studying breast cancer at all.
“They were regular people who had had breast cancer, or their mother had had it, or their sister had had it, and they were eager to hear the science and they were eager to look to how we could end it,” she said.
“Women didn’t know that much about breast cancer, and we wanted them to be able to represent what was going on,” Love said. “We started educating them in a program called Project LEAD, and we got different scientists to come, and over a weekend, we would educate them on breast cancer.”
Now, Love and the National Breast Cancer Coalition had a group of educated and excited activists willing to fight.
“That was really good, because when we then went and tried to lobby for more money, all the women were very educated,” she said. “[Congress] couldn’t just say, “Oh, don’t worry, dear. We’ll take care of it,” because we already knew what was needed, and we could demand it.”
In Love’s eyes, breast cancer and AIDS activists set the stage for modern day disease advocacy.
“Now, you see people who are involved with all kinds of diseases—from multiple sclerosis to AIDS,” Love said. “You’ve got people who get a disease—always a percentage of them will end up trying to make it better…and this idea that regular old people, or people with a disease could be responsible for figuring it out and maybe ending it, was really started with AIDS and with breast cancer.”
By 1993, activists and the NBCC had secured the $300 million from Congress they had long fought for. Love and Kay Dickersin, a breast cancer survivor and epidemiologist, realized it was time to educate breast cancer advocates, through a program called Project LEAD.
Love spoke with Alexandria Carolan, a reporter with The Cancer Letter.
