When Kay Dickersin was diagnosed with breast cancer in 1986, the support group available to her in Baltimore focused largely on how to get the makeup and wig to look right.
“Everything was geared to—women have needs. Maybe if they did their makeup differently, or wore the right wig, then they’d be happier,” Dickersin, professor emeritus at Johns Hopkins Bloomberg School of Public Health, said to The Cancer Letter. “I thought, no, that’s not the right approach. Maybe we empower them with knowledge and that’s the right approach.
“Nothing’s going to make you happy with breast cancer. It’s not a happy situation,” Dickersin said.
Three years after Dickersin’s diagnosis, she and Marsha Oakley, a breast cancer survivor and nurse in Baltimore, took their concerns about existing support groups into their own hands and started their own group, called Arm-in-Arm.
“Support means various things to various people,” Dickersin said. “At our Arm-in-Arm meetings, which were once a week, women would apologize because they hadn’t had as bad a treatment as someone else. So typical of women.”
They didn’t need to become mini-scientists, but they needed not to get snowed about what was being talked about and not to get all flustered, but take it into account, ‘Oh, I’ve heard that before, and here’s my counter argument.’
Dickersin and Oakley’s advocacy grew out of larger movements from the time.
“We’d been advocates for car seats for children, bicycle helmets for everyone, and for husbands coming into where you deliver babies,” she said. “We were anti-Vietnam. It was a continuation of what we’d been doing all along.”
Rather than talk about how to improve one’s eyeshadow technique, the women in Arm-in-Arm, run out of Greater Baltimore Medical Center, would address the side effects of breast cancer treatment, how chemotherapy made people sick, and radiation made people tired.
“It was more about, well, we talked about what had happened that week,” Dickersin said. “I talked to a woman about reconstruction, because there was a new kind of reconstruction going on, and that was taking the fat from your back and moving it to the front.”
Dickersin recalls the conversations about prostheses, which were common among women who had mastectomies.
“One woman I talked to on the phone said that her prosthesis came out [while] on a water slide,” she said. “They had to drain the water slide in the end.”
The group kept things lighthearted.
“We started a newsletter that had jokes in it,” Dickersin said. “We did a lot of joking around. We called our joking whistling past the graveyard.”
Then, Marsha Oakley received an invitation from another advocate, Amy Langer, of the National Alliance of Breast Cancer Organizations, to attend the first meeting of the Breast Cancer Coalition, which would later become the National Breast Cancer Coalition.
“We went and that’s when we each volunteered what we could do,” Dickersin said.
Dickersin, who had a master’s degree in cell biology from University of California Berkeley and was working on her PhD in epidemiology at Johns Hopkins when she first got involved, said she could help with the science side of things.
At early working board meetings of the NBCC, which began after the 1991 Do the Write Thing campaign, teachers, including now former NIH director Francis Collins, would educate the board on things like epidemiology, biostatistics, and basic science.
“Pat Barr [a patient and lawyer from Vermont] sat next to me and she said, ‘We should take this on the road,’ which, obviously we were all thinking that, because the teach-ins were wonderful,” Dickersin said. “We did take our teach-ins on the road, and that’s where Project LEAD came about.”
Project LEAD is NBCC’s educational arm for activists. Susan Love, who was co-chair of NBCC’s research task force with Dickersin at the time, also spoke about her recollections of Project LEAD with the Cancer History Project.
Dickersin ran Project LEAD workshops about molecular biology.
“I had a master’s degree in cell biology, so I knew the molecular biology-end of things. And then epidemiology and biostatistics was my other side, and that was a separate teach-in,” she said.
The original idea was to hold Project LEAD teach-ins in four cities, Dickersin said.
“In each city, we’d get the people who were active there, both the advocates and the teachers, to participate,” she said. “The idea was if the advocates knew how the science worked, then they would be able to answer people’s questions in Washington, DC, and on IRBs locally.”
Students in Project LEAD classes only stumbled when their ideas didn’t necessarily match up with the science.
“A lot of them worked for trying to get mammogram mobiles out in their community,” Dickersin said.
But when data showed that mammographic screening for breast cancer was not necessarily effective, Dickersin helped them understand what that meant.
“We took a lot of time on that—that’s epidemiology and biostatistics—talking about what screening tests mean,” she said. “That was very important.”
Project LEAD teachers included Francis Collins, Andy Futreal, Mary-Claire King, and Bob Millikan. Fran Visco, the first elected president of NBCC, also brought in advocates as teachers.
“The idea is that you can become a teacher, too—that, I think, is good in that it helped move things forward,” Dickersin said. “Here are some role models for you. Not just people who in their outside lives are professors or surgeons or whatever, but also here are some advocates who are doing this.”
The initiative sought out to accomplish that early nagging question of Dickersin’s—what if support groups provided advocates with knowledge instead of information about how to apply makeup?
Nothing’s going to make you happy with breast cancer. It’s not a happy situation.
“If advocates were going to go to DC or sit on local institutional review boards, or clinical trial boards, or whatever, they needed to know the basics so they could talk about the language, so they could use the language,” she said. “They didn’t need to become mini-scientists, but they needed to not get snowed about what was being talked about and not get all flustered, but take that into account, ‘Oh, I’ve heard that before, but here’s my counter argument.’
“My goal was really to get consumers more involved in research questions, but they really were interested in their own treatments,” she said. “The doctor-speakers who treated women with breast cancer were surrounded by advocates, because people taking the course, because the advocates, wanted information about their own treatments.
Dickersin spoke with Alexandria Carolan, a reporter with The Cancer Letter and associate editor with the Cancer History Project.
A podcast of the conversation appears here.
Kay Dickersin: I was diagnosed in 1986. That’s a long time ago. I said to my surgeon, who’s long since gone—he died of AIDS in, I think, the ‘90s, but I might be wrong.
Anyway, I said that I really thought that there should be more support for consumers with breast cancer, and he introduced me to people.
One of the people I met, not through him, but through another person through some advocacy work I was doing at the time, was Marsha Oakley. She and I started a group called Arm-in-Arm. It was a support group for women with breast cancer. We held that support group out at the Greater Baltimore Medical Center.
Marsha and I started a support group, and I learned a lot during that. And then, we got an invitation to come to the first NBCC meeting from Amy Langer [head of the National Alliance of Breast Cancer Organizations], who had a mailing list at that time.
Anyway, it was just called BCC then. We went and that’s when we each volunteered what we could do. I said, “Well, I know something about science,” because I was a graduate student then.
Then, later on, I worked for the ophthalmology department and I had a wonderful boss, Richard Richards, who said, sure, I could work on breast cancer. We all worked for free and took time out of our work lives to fax and write letters and that kind of thing.
Anyway, then we started BCC. We held the working board meetings. NBCC started in 1991 with the Do Write Thing campaign. I have a few pictures of that.
Sue Love and I were co-chairs of the research task force, which was one of the task forces on the working board. Around that time, around 1992, I don’t know exactly the year, we moved to an elected board and that’s when Fran became our first elected president and we renamed ourselves NBCC.
We started Project LEAD in 1996, in stages. I was being called down to Washington all the time. We had a working board then and we met every month, which was hard. I said, “The rest of you can answer these questions that I’m going down to Washington for all the time.”
We did a lot of joking around. We called our joking ‘whistling past the graveyard.
We had teach-ins in 1994, one in epidemiology and biostatistics and one in basic science for the working board. That’s what I can remember anyway. I have just a couple of pictures of Francis Collins. He taught—we had good teachers.
Pat Barr [a breast cancer survivor and lawyer from Vermont] sat next to me, and she said, “We should take this on the road,” which, obviously we were all thinking that, because the teach-ins were wonderful. We did take our teach-ins on the road, and that’s where Project LEAD came about. I didn’t come up with a name. Someone who worked for NBCC did. It stands for Leadership, Education, Advocacy, and Development.
Sue Love and I were co-chairs of the research task force, which was one of the task forces on NBCC’s working board. Around that time, around 1992, I don’t know exactly the year, we moved to an elected board and that’s when Fran became our first elected president.
KD: Pretty early on. I was a student in a school of public health, and public health is advocacy to begin with.
You’re advocating for something, for example, to reduce gun violence, increase HIV treatments.
I mentioned to my surgeon that I thought we needed a better support system for people with breast cancer. I was part of a group here in Baltimore called NEED.
Everything was geared to—women have needs. Maybe if they did their makeup differently, or wore the right wig, then they’d be happier, stuff like that. I thought, no, that’s not the right approach.
Maybe we empower them with knowledge and that’s the right approach.
Nothing’s going to make you happy with breast cancer. It’s not a happy situation. Anyway, it really got started pretty much right away, the advocacy part.
KD: I was as surprised as anything. I had two children, six and 10, and they surprised me how they reacted.
I thought the younger one would be more upset. Really, the older one was, and the younger one just wanted to ride up and down on the hospital bed. Everything surprised me, including being diagnosed so early.
But then, my sisters were in their thirties when they were diagnosed. Mary-Claire King looked for a putative gene. She didn’t find anything.
KD: Arm-in-Arm was started about three years after my diagnosis and we were just basically looking at a support situation.
Support means various things to various people.
It can mean having other women who’ve had breast cancer who are young, or it can mean… Well, at our Arm-in-Arm meetings, which were once a week, women would apologize, because they hadn’t had as bad a treatment as someone else.
So typical of women, I think.
Anyway, we started a newsletter that had jokes in it. We did a lot of joking around. We called our joking “whistling past the graveyard”. It was different for me. That was good for me. Not for everyone, I’m sure. But we spent a lot of time talking about chemo, which I didn’t have.
KD: Well, I had surgery—the end. I had a tumor, which nowadays would be considered big. It was two centimeters.
The lumpectomy trials were just coming out, and I elected to have a lumpectomy with radiation, but found out that I couldn’t, because when they went in and did the lumpectomy, they found types of disease, different types. That was out.
I talked to a lot of people who had done those trials because that was my field. I knew them and they advised me and that was good. One person, who was an epidemiologist and an MD, he said, “Just do what your doctor tells you to do,” but that assumed they knew what they were talking about. Fortunately, I had good doctors.
KD: Yeah, well, yes.
I think I did things in the order that was right for me. I think Arm-in-Arm came a little bit later, because I mentioned the advantages of support to my surgeon.
One question was, well, who coordinates your care if you have breast cancer? Does anyone? This is a problem, I think. Who coordinates the care of anyone with any disease? My surgeon coordinated my care.
I did say to my surgeon that I thought that support was lacking and he said, “Oh, I want you to meet someone.” I thought, “Uh-oh, he’s going to send me to a psychiatrist.”
But he didn’t. Well, in those days, just one group came around and visited you in hospital. To be visited by them, you had to have a mastectomy, not a lumpectomy, and that was a problem.
There was a split between mastectomy and lumpectomy. It was during that time that advocacy began in earnest, I think.
There were few women involved in advocacy. I think everything went about right for me.
KD: Well, this group at GBMC, Greater Baltimore Medical Center, headed by Gail Lemaire, was a women’s center. In those days, there were women’s centers that I don’t think there are anymore. She headed that group.
They found out about it that way. And also, there was other advocacy going on and we were proponents of it, our age group.
We’d been [talking] about car seats for children, and husbands coming into where you deliver babies, and others—bicycle helmets. It was just a continuum. We were anti-Vietnam. It was a continuation of what we’ve been all along.
KD: That’s right, yeah. It was more about, well, we talked about what had happened that week, and a lot of women talked about their chemotherapy and that they were sick.
There was a lot of discussion about chemo and radiation, how that made people tired.
The surgery, though, is over pretty soon. And then there was—I remember, I talked to a woman about reconstruction, because there was a new kind of reconstruction going on, and that was taking the fat from your back and moving it to the front.
People wore prostheses. I did, too. One woman I talked to on the phone said that her prosthesis came out [while] on a water slide. They had to drain the water slide in the end. I thought, well, I don’t want that to happen.
Your kids do get attached to that kind of thing.
KD: Well, as I said, Amy Langer and colleagues sent a letter to Arm-in Arm, to Marsha Oakley, asking that groups on their mailing list who wanted to go beyond the PACs in Washington, DC.
There had been at least one PAC. Rose Kushner, I think, had started a PAC about breast cancer advocacy in Washington, DC. I had been to some of those hearings.
Anyway, Sue Love, Susan Hester [founder of the Mary-Helen Mautner Project for Lesbians with Cancer], some other people too said, “We’re going to have four or five different pods—research, advocacy etc.” Anyway, they said, “What do all of you want to do?”
I had graduated by then, I think. I had moved to University of Maryland from Johns Hopkins and was at Maryland for 10 years. I could probably do research, because clinical trials were my specialty.
For the first four years at University of Maryland I was in the department of ophthalmology, then I moved to epidemiology, but I was still in ophthalmology at this point.
KD: Well, I was interested in those days, in reproductive epidemiology.
At Hopkins students could have several specialties, chronic disease, infectious disease, or genetic disease in epidemiology.
I chose chronic disease, and within that was the specialty of clinical trials. That was my area. There was one professor, and he’s still around and still quite active.
Anyway, he got me involved in clinical trials, very involved. And I got involved—I was always a feminist, and that was part of my interests.
KD: Well, it went in pretty much the direction I expected and hoped. That is, in 1991 we did things like the Do the Write Thing campaign was collecting letters. That was the easiest thing to do.
We went out to light rail stops, etc., and we got all our required signatures on petitions.That was Do the Write Thing. I have some photos of packing our boxes and so forth.
And then the next campaign was to raise more money for breast cancer research, $300 million more. We got more signatures and more. I have some things related to that.
That is very complicated because we invited people to come and give a talk and they did. That’s what just amazed us. Scientists came and gave a talk about where they thought the money should go and how much we needed, etc.
Those of us on the research Task Force huddled to try to figure out how much we would need. At that point, I think there was a question about whether we should share the money we asked for.
And being women, of course, we thought, “Oh, share.” Some of the senators wanted us to share also.
That’s what just amazed us. They came and gave a talk about where they thought the money should go and how much we needed, etc. We huddled to try to figure out how much we would need. At that point, I think there was a question about whether we should share. And being women, of course, we thought, “Oh, share.”
We had good teachers. They were chosen because they were good teachers.
But Ellie Smeal came to a Board meeting and talked with us and said, “No, this is about breast cancer. Just talk about breast cancer. Don’t talk about ovarian cancer or abortion or anything else.” That was a very compelling argument. I think we did just stick with breast cancer then. We figured we needed $300 million more, despite the amount that was already being allocated to breast cancer.
Bernadine Healy, who was then head of NIH—she had been Bernadine Bulkley back at Hopkins.
She said, “Oh no. We don’t need the money for women’s health because we already gave enough to women’s health last year.”
Because it had been the year of the woman. [The year 1992 was dubbed informally the Year of the Woman because of the number of women elected to Congress].
She was on my bad list anyway because of daycare at Hopkins, which I tried to get started with some other people who were also pregnant at the same time, and she said, “Oh no. Next thing you’ll want chauffeurs to drive your kids to daycare.” Well, we didn’t. “You’ll have to share the drivers. You’ll have to share everything. You’ll have to share daycare slots with people from housekeeping.” Which, of course, we would.
I think people accept these ideas more these days, but there was more elitism then.
KD: It was complicated, yeah.
See, there was a changing of the guard then. It was accepted by Bill Clinton and Hillary Clinton, and Bill was then in the White House. He was a favorite with NBCC because he said he was happy to accept it.
President Bush-the-elder said he had made an agreement with NIH that if he was able to raise taxes, he wouldn’t ask for more money for let’s say cancer research.
He didn’t want to ask for more, but Fran, and Sue Love, and others found that the army had allocated I think $25 million to breast cancer in the past.
So, asking for more money was nothing new.
Congress theoretically just expanded the amount allocated, the $300 million more would expand that pot, rather than NIH’s pot, where Bernadine Healy said they didn’t need anymore for women’s health.
We did rally and get more money for breast cancer. In fact, more than $300 million more, and every year NBCC has had to fight for this money. They’ve never gotten as much as $300 million more, but they have gotten more every year. I don’t know what’s happening now.
Project LEAD was started soon after that, maybe 1995.
[Editor’s note: A conversation with NBCC president Fran Visco about NBCC’s fight for $300 million more appears here.]
KD: He was one of the teachers, Mary-Claire King.
Yeah, we had good teachers.
They were chosen, because they were good teachers. Francis Collins was an excellent teacher who talked about genetics.
We held these teach-ins and it was wonderful, mainly because I loved the subject matter anyway. I had a master’s degree in cell biology, so I knew the molecular biology-end of things.
And then epidemiology and biostatistics was my other side, and that was a separate teach-in.
Our first idea with Project LEAD was to offer it four times per year and each course would be in a different city. In each city, we’d get the people who were active there, both the advocates and the teachers, to participate.
We had a two day meeting in Columbia, Maryland that was oriented to try to get the curriculum standardized. We divided in half by responsibility, epidemiology and biostatistics, and molecular biology.
It was interesting because the epidemiologists spent almost the whole time arguing about what is epidemiology. Well, what does it mean? The molecular biologists got down to real work. That difference showed in Project LEAD, I have some pictures of that.
By the time we met in Columbia, MD, BRCA1 had been identified. Andy Futreal came to the meeting. Bob Millikan, who’s no longer alive, was at that meeting, and then he was a core teacher in Project LEAD for many years.
Our original idea of teachers being local didn’t really work. We quickly found out that it was very hard to get clinician and epidemiology teachers to say what we wanted them to say (e.g., about hormone therapy). We were evidence-based.
Teachers said what they wanted to say, naturally. Pretty soon, very soon, it became a tight ship of people who we knew what they were going to say.
Around that time I was on a committee at the Institute of Medicine, (now it’s the National Academy of Medicine) to outline the grants process for the Army. Harold Varmus was on that committee and various people, including people who aren’t alive anymore.
KD: I just couldn’t go down to Washington all the time anymore. The idea was if the advocates knew how the science worked, then they would be able to answer people’s questions in Washington, DC and on IRBs locally. This worked.
But where they got stuck, is where they really were excited, for example, a lot of them got mammogram mobiles out in their community.
They were upset that the data showed that mammographic screening for breast cancer was not effective in most women. We took a lot of time on that, that’s epidemiology and biostatistics, talking about what screening tests mean.
That was very important.
KD: In my mind, that’s why I wanted to see Project LEAD started. After the teach-ins, members of the board could go down to Washington, DC or wherever hearings were being held, and talk about a topic if they could afford it. If advocates were going to go to DC or sit on local Institutional Review Boards, or clinical trial boards, or whatever, they needed to know the basics so they could talk about the language, so they could use the language.
They didn’t need to become mini-scientists, but they needed not to get snowed about what was being talked about and not to get all flustered, but take it into account, “Oh, I’ve heard that before, and here’s my counter argument.”
KD: Well, right away they started talking about different trials that were ongoing and different chemotherapy. So then Fran brought in advocates as teachers in Project LEAD. The idea is that you can become a teacher too; here are some role models for you.
Not just people who in their outside lives are professors or surgeons or whatever, but also there are some advocates who are doing this. I think that was a good idea.
KD: Well, I liked the course as a whole, which is four days long. A graduate student of mine, David Schmeidler did the first version of each part of the curriculum.
I loved hearing people’s interpretations and I remember very well people’s expectations versus reality. That is very important.
I also remember the people that we got in to talk who wanted to talk about something different, like why hormone therapy is good, which it probably is not, generally speaking,
KD: Project LEAD now meets once a year in San Diego. It became a lot to do something four times a year.
People were taking it that often but It was a lot of work, organizationally.
Students were really blown away, I think, the first couple of days, and then started relaxing. It’s hard to teach where people get blown away.
And also at that point, the board stopped paying for itself to travel, and NBCC started paying more. Four times a year was probably not as necessary as once a year.
KD: Well, my expectation was that they would actually serve on a committee, like an Institutional Review Board at some institution in their town, or data monitoring committee, or something where consumers would be more part of things.
But they didn’t do this necessarily. Sometimes they served because they were interested; that’s OK to see especially if they didn’t internalize some of the material as much.
Some of the people who became mentors were good. I think, as far as mentors go. Some were less good as teachers. Fran chose good teachers, for example Bob Millikan and Steve Goodman.
My goal was really to get consumers more involved in research questions, but they really were interested in their own treatments.
For example, the doctor-speakers who treated women with breast cancer were surrounded by advocates, because people taking the course, because the advocates, wanted information about their own treatments.
KD: Well, you’ve stirred up a lot of memories. They are getting dimmer and dimmer. I’d be glad if you could talk to other people, and I can send you photographs.