The path to advocacy at Share and other support groups that work through a coalition called the National Breast Cancer Coalition lies through Project LEAD, a series of vigorous week-long courses on basic science and clinical trials. If you work through the NBCC umbrella, you take it for granted that advocacy requires education, which means Project LEAD. It is not a specific requirement, but people like the course and are proud of it. Most of the NBCC leadership as well as the leadership of grass-roots organizations that work through NBCC have been through it.
Project LEAD has functioned so well for so long – sixteen years- that it’s taken for granted. It has graduated about fifteen hundred advocates, almost all of them women with breast cancer.
Genuine public movements begin with conversations. In the case of NBCC, the conversations began in the 1980s, when political groups focused on breast cancer started to form. In part, these groups were rooted in the feminist movement. In part they were emulating the AIDS movement, an offshoot of the gay rights movement that made AIDS a national emergency.
The breast-cancer movement is all the more interesting because of the role of one book, Dr. Susan Love’s Breast Book, which was first published in 1990 and is now in its fifth edition. Love, then a surgeon at Dana-Farber Cancer Institute, told a story of a fundamental misunderstanding of breast cancer: that clinical trials demonstrated that radical surgery for breast cancer was powerless to change mortality, and that life-threatening forms of breast cancer, even in their early stages, are systemic diseases that require systemic treatment.
There were breast cancer books before Love’s, but hers did something new: it laid out the science comprehensively, in a dispassionate manner, with the sole purpose of helping women make decisions on treatment. Love knew what was going on in breast cancer. She had been practicing at the hotbed of more-is-better, the institution where high-dose chemotherapy with bone marrow transplantation was a bread-and-butter procedure.
She fought it tooth and nail, and when Susan Love gets angry, you know it. Yet, the book is more measured than its author. “The reason I don’t say breast-cancer care sucks is you will have less influence,” she reflects. “I think there is a fine line if you want to get listened to, of how you lead people to realize there is a problem without completely pulling the rug out from under them of what they they are getting right now.”
Love was not surprised that the book was well received in Cambridge, Massachusetts, and in Berkeley, California. But, to her surprise, it did well in all the states in-between too. In June, 1990, about six hundred women showed up to hear her give a three-hour talk in Salt Lake City.
“In those days, I was going through the treatment options for breast cancer, I was teaching the whole thing: the surgical, the local, the systemic treatment, and it just seemed to be going on forever,” she recalls. “It was the middle of the day, the middle of the week, and there were all these middle-aged women there. I was looking for a laugh. I was looking to lighten things up.”
So she deadpanned, “We don’t know the answers, and I don’t know what we have to do to make President Bush wale up and do something about breast cancer. Maybe we should march topless to the White House.”
Love was looking for a laugh, and the line still amuses her two decades later. “It was Bush Senior, so the idea of these topless women marching to Bush Senior’s White House was funny. They all laughed.”
After the talk ended, the middle-aged, middle-class, middle-American women, one after another, inquired, “Okay, when is the march? When do we leave?”
This shocked Love. “Suddenly, it hit me that the time was right. I knew about breast cancer groups in Cambridge and Berkeley, but I thought, ‘That’s just Cambridge, that’s just Berkeley.’ But this was something else: Salt Lake City was ready to go. It was time to do something.”
Later that week, Love and her partner, surgeon Helen Cooksey, were driving to their cabin in New Hampshire. “I looked over to her and I said the time is here top politicize breast cancer. And I am afraid that this is the right moment for this. And I am in the exact right position to do it. And I gotta do it.”
To this Cooksey replied, “I’ll never see you again.”
Later that year, Love met with Susan Hester and brainstormed the idea of setting up an overarching organization. In those days, Love – who can be disruptive unless she multitasks –carried a stack of three-by-five index cards on which she scribbled notes to herself.
She saw her role clearly, with a surgeon’s precision: “You need somebody who is a catalyst, which is my role. I can see the vision, and I know it’s the right time, and I can get people together. And then you need somebody that’s going to run it, which is not my forte at all. You really need a hard-ass. You need somebody who doesn’t back down.”
Love and Hester spoke with all the groups they could locate, getting the conversation rolling. Then Hester asked a Washington law firm to provide a conference room, and everyone who knew of a breast cancer group or had a list of breast cancer groups stated to make calls. The groups were being invited to a meeting.
The organizers had no idea who – if anyone- would show up.
The word spread through political and peer-counseling groups nationwide. Everyone interested was to meet at a set place at a set time. More than a hundred groups showed up.
Many of the women who came forward had led movements before, marching for civil rights, protesting the war in Vietnam. There were also veterans of the women’s rights movement, gay rights advocate, and a smattering of Israeli peaceniks. For that eclectic bunch, street theater was entertainment, being maced, billy-clubbed, and cuffed was the stuff of fond memories of youth.
Fran Visco, a commercial litigator at a Philadelphia law firm, was one of the women who showed up. As a fifth-grader at a Catholic School, she wanted to be a medical missionary. During the Vietnam War, she volunteered with the Central Committee for Conscientious Objectors. In 1987, at age thirty-nine, as a mother of a fourteen-month-old boy, she was diagnosed with Stage II breast cancer. Two years later she answered an ad for a support group called the Lina Creed Foundation.
“I don’t have the gene that I’m driven to make a lot of money,” she says years later. “I have the gene that says I am driven to plague those in power to try to change things for the better, whatever that is.”
Visco showed up at the May 1991 breast-cancer meeting in Washington and was later elected the coalition’s president. “We wanted to make it a political issue, we wanted to impact the system of research and health care,” Visco says. “There were groups doing support, there were groups raising money for research through different avenues. But no one was looking at breast cancer in a systematic, overarching way and saying what needs to change in all these areas in order to help women.”
When she showed up at the Washington meeting in May 1991, Visco knew nothing about breast cancer. She had not read Love’s book and had no idea who Love was. Now Visco knows a lot: policy, politics, regulations, epidemiology (both classical and clinical), biostatistics and basic science. And she is not an exception. At least fifteen hundred people involved in NBCC know big chunks of what she knows, and some know more.
“We want to have a real impact on this disease,” says Visco. “We don’t want to just get more money for the scientific community and then just let them do what they want with it. We wanted to be able to oversee how the funds are spent and collaborate with scientists o set priorities and design research. To do that, we have to know what we are talking about.”
Yet, in 1991, the founders of the coalition had no plans to engage in systematic, rigorous education of the advocates. The mission evolved as the group started to adjust to its success ( which by 1993 tripled the $90 million the NCI was spending before the coalition’s appearance.)
Perhaps one important moment occurred at one of the early meetings of the board, when epidemiologist and breast-cancer survivor Kay Dickersin saw an old acquaintance, Patricia Barr, a Vermont Attorney.
The two had originally met at Bennington College, and Kay, who was two years younger, remembered Pat’s role at a teach-in in 1969, at a Moratorium to End the War in Vietnam. These events began on October 15, 1969, and continued on the fifteenth of each month.
“You can’t possibly remember me,” Kay started. Indeed, that was the case, Pat was a leader of the antiwar movement and Kay, a freshman. Even now, in middle age, Pat was as conspicuous as she was on the Bennington campus in 1969. At the board meeting, Kay remembers Pat wearing glasses with a super-bright aquamarine frame. Pat was clearly not about to let metastatic disease get her don. She would fight it the way she’d protested the war. Now she was building a grassroots network for the coalition – the firs of its kind in cancer – and Kay was there to represent a Baltimore patient group.
That Kay was a top-notch epidemiologist had not yet seemed relevant. But Dickersin was the first researcher to describe the publication bias – the tendency to publish positive studies and not publish negative studies. Though she didn’t completely understand it at the time, Dickersin was at the foundation of two important institutions of evidence-based medicine. In her day job, she was working in the Cochrane Collaboration, a worldwide collective of statisticians who pool data from existing sources for meta-analysis.
In the early days of the coalition, only one other member of the board – Love- understood the science and, alas, she was chronically over-scheduled. Dickersin wanted to spread out the responsibility of talking with congressional staff members.
Visco remembers the discussion. “Kay Dickersin said ‘If we want to influence NIH, if we want to influence science, all of us need to know what we are talking about.’ And that certainly resonated with me. When you are a trial lawyer, you don’t walk into that courtroom, you don’t walk into any argument or deposition, unless you knoweverything. You have to know the sttengths, the weaknesses, you have to understand it all I knew that when I was practicing law that if my client had a business that made windows, I had to learn about that. Now I had to learn science.”
The first teach-in, was conducted in conjunction with a board meeting. “They really got it,” said Dickersin. “It was cool for me as a teacher.” Ultimately they took their teach-in on the road, developing a core curriculum and a group of teachers – all of them top-notch scientists. The curriculum changes over time, sometimes to reflect new science and sometimes to add new areas of emphasis. The course is designed to push patients outside their experience. To produce something like Project LEAD you need skepticism and a cadre of tough, dedicated people who safeguard it. “You need a culture,” says Love.
“The problem is, people don’t realize they are not getting good-quality care,” says Love. “So the first step is to show them. And that’s really hard, because when it’s you, it’s too scary to think you are not getting good-quality care. Even if somebody gives to a cogent intellectual argument, when you are sick, you have to believe you are getting good-quality care.”
This is a battle that needs to be fought. Rational health care has the potential to save millions of lives over the next several decades. It must include preventive medicine and could actually have an amazingly positive effect on the economy. To o it requires accepting that there is a significant problem, and resolving to solve that problem. Patients and health-care providers must work together, constantly asking these two questions:
“What is rational?” followed by “What is reasonable?”
How do we protect ourselves, our loved ones, our neighbors? There is only one way. We do it by demanding a health-care system that can say “Prove it”, a system that can say “No” and make it stick. For this to happen, real people – ideally, all 300 million of us – will have to say “Enough!”
How We Do Harm; A Doctor Breaks Ranks About Being Sick In America by Otis Webb Brawley, M.D. with Paul Goldberg; St. Martin’s Press, N.Y. 2011
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