Listen to the Interview Karen Joy Miller is the founder of Huntington Breast Cancer Action Coalition and Prevention isthe Cure.What follows is a transcript of an interview with Karen Joy by Heather Sarantis of The Collaborative on Health and the Environment.
Heather: Could you describe the work you do related to women’s health and the environment?
Karen Joy: For the last 20 years I have been involved with various groups including breast cancer groups. I would describe myself as being invested in public health in general, looking at the environment and the role it plays in creating and exacerbating a chain that leads to many life altering diseases.
My personal view of the breast cancer movement was that it was a phenomenon. In the mid-80’s when I came on board we were not really talking about breast cancer. You had a couple of high profile people who were disclosing the fact that there was this rampant disease that was affecting women. But the movement itself was almost phenomenal. People from the west coast to the east coast, without even knowing each other, began to formulate their thoughts and reach out among their communities and ask who was interested in this subject of public health, especially public health that affected the minority population, women.
And I think a great deal, maybe 50 % of the time, it wasn’t only about breast cancer, even then. It was about making a case for a group that had not been heard, and sort of changing the paradigm and the face of science forever. We had no idea we would be doing that at the time. So that is quite something to look back on.
Everybody was doing the ground work, many not knowing that next door other people were doing the ground work, and there was a swell, like a tsunami, a good tsunami. And people began to report and other people were ready to report back, and there was an information sharing phenomenon. I think probably more money was spent on the telephone then than at any other point in history. And basically what was very intriguing was the overarching feeling that we need to tell our stories to people who will help make a difference. We need to make other families tell their stories too. We need to make this a really big groundswell of interest. And when we do that, we think that ending a lot of other diseases will be a by-product of our work.
Heather: So did this movement lead you to found the organizations that you founded?
Karen Joy: Interestingly enough, it started very humbly. I put an ad in a free paper and I said, “if anybody is interested in working on breast cancer, contact this number.” And to fast track the story, I got three calls immediately. All three women, and to this day we keep in touch, have not been diagnosed with any life threatening disease. But when we formed and met that day in the kitchen, our commonality was that we lived on Long Island in Suffolk county. We gave it a name that day. I was the only one who had been diagnosed and within the first three months there were virtually hundreds and hundreds of people coming to my house. That became a problem. I started looking for any kind of public space. We went to libraries, we outgrew the libraries. Then we went to donated office spaces. All of this was happening in the first three to six months. It was like the flood doors had open and people had things to say.
Heather: What do you think sparked that? Had the word just spread through friendships and sisterhoods or stories in the newspaper? What caused that kind of storm?
Karen Joy: I think that it was more community to community. It was almost an invitation: Are you a stakeholder? Are you interested in the issue of breast cancer? Do you have something to say? Has it affected your life? So it was a cry-out, not to say something, but a cry-out to ask something and to create a stakeholder’s table. And let me tell you, everybody came because everybody had their stories.
Within the first year we were virtually hundreds of people strong and we decided we needed some structure. Well, that was a joke. But the overarching theme about structure was many of the women were interested in survivor support services: What happens when you’re diagnosed? How do we get through that period? How can we help other women? How can we make hospitals better? The other issue was access to care. Access to care is a very important and needed issue. And the third issue, right from the very beginning, was that this is not necessarily a breast cancer movement. It was: Let’s use breast cancer as a subject to open up the floodgates and chance science forever. What causes disease?
Fast forward over the next ten years. So now there are so many people and I am getting so many calls and somebody asks have I ever spoken to our local U.S. Congressman. And is said no, I don’t even know who he is. Long story short, somebody made an appointment for me to meet with Congressman Gary Ackerman. I was one of his constituents here. As I just mentioned, we were chasing after the need in our community. The New York Times had picked up on it. They decided that they would have this as a cover story about this phenomenon of strange people, strange families getting together and chasing this. So they made an appointment to come and meet with however many stakeholders wanted to be there. And it worked out to be the same time of my appointment with this U.S. Congressmen. So being a total newcomer to all of this, but knowing this is all the right path, I wasn’t aware that when you have an appointment with a Congressman you can wait hours, if not days.
So hours were passing and I was trying to make the first executive decision saying, “Should I be with the guy with the New York Times or should I meet my Congressman?” And really, at the eleventh and a half hour I just said ”Well, you know what, I’ll come back.” I stood up and went to leave. My hand was on the door-this is a true story, you can ask the Congressman-and this guy with a carnation comes out of the back office and says—big smile on his face—“Who’s Karen Miller?” So I turned around and said, “I’m Karen Miller, Senator” I didn’t call him a Congressman, but I said, “I really have no time to talk to you. I’m going to make another appointment.” So he said, “Wait, come into the office. Just give me an overarching view.” I told him that we needed to get a study that looked at what causes this disease. That personally I was not interested in a cure, that I wasn’t interested in my life. But now I have three children and hopefully will have grandchildren. And I didn’t know what my risks were. So I said, “Do something about it.” Our talk was less than five minutes long when he concurred.
We went, we had our report, we made the cover of the New York Times. And within one week the phone rang and everybody, strangers, new people were all together. – We’re maybe 18 people on this particular morning and the phone rang and somebody said, “Oh my god, it‘s a Congressman asking for you.” And he asked if I would give testimony before the Long Island Congressional delegation in regard to the creation of a research project.
So fast forward. Long Island Breast Cancer Study Project became the first mandated, and perhaps the only mandated science research project of its kind. Mandated by law. The entire Long Island Congressional delegation came to Huntington, that’s where Gary Ackerman was housed and where I live and Senator Al D’Amato and the NCI, and we just gave it our all. And the Long Island Breast Cancer Study Project was launched.
And that was new beginnings. We then, like a miracle, knew that we were going to keep our eyes on the prize. The most important part of this movement was to keep stakeholders at the table. And who are stakeholders? Stakeholders are people who can change the laws, stakeholders are providers of health, stakeholders are people who wake up everyday and are affected by health issues. And it is very important for us to keep that stakeholder matrix out there.
We met and launched the Long Island Breast Cancer Study Project and in naiveté thought that within five years, since research was so outstanding, we could get answers to our questions. But what we had really forged was this stakeholder concept. That basically, as taught to me by people better than I, we are an iron triangle, that the affected community, elected officials and research scientists all need to be at the table at the same time and we need to discuss from all our various overlapping points of view what is important and what our priorities should be. And we need to engage each other and keep that commitment ongoing.
Now, through the Long Island Breast Cancer Study Project—which did not show a cause and effect relationship after five years and I think $35 million had been spent—the doors to that iron triangle—the stakeholder’s concept—had virtually been locked open. We looked back—and it has been written—science, research, partnerships, communication, public health in general had been changed forever. Partnerships were forged that made tremendous positive headway in public health issues. And it is ongoing now.
I personally have kept that concept closest to my heart. I work with local, county, state and federal policy makers providing each of them an opportunity to do the right thing. We teach them they need to do it in partnership with people from the opposite party. Keep that door open at all times.
While that’s going on, we talk and we take info from our sisters who are looking at various risk reduction methodologies, and they can campaign vigorously and very professionally. They have what I think they call shareware. And we take the information that they have gleaned and pass it on to our communities so that we can begin to look at two words that are very powerful: risk reduction. So that’s educating the community, educating the policy maker.
And the third piece is making sure that you understand the science. Our science was based on building blocks of “we’re only going to look at what we’ve looked at for the past 20 years” and we were going to keep looking at it and build on it slowly. Science is a slow process. But we are looking at it now as trans-disciplinary science. We are encouraging more of the center model rather than the singular model of one researcher—as good as he or she is—who is dealing in a vacuum, competitively on their own. And we’re encouraged by what we’re seeing in that kind of movement.
There was also a tremendous breakthrough between people who have been dealing with the environment but did not wear the face of public health—they didn’t bring their amputated body part to the table. Collective environmental groups and disease groups, people who are affected, part of the stakeholders, have learned to work together. It sends a stronger message.
Heather: That is an incredible story. And as I am listening to you I’m thinking that, in a way, you were an accidental activist. You had no idea what you were diving into many years ago. And look at how far you’ve come with your community and you’ve brought other people along with new models for how to do things.
One thing I am struck by is you said the study did not prove a cause and effect, but you created a whole other model of understanding how to work together. Yet at the same time we know over recent years that there has been an increasing amount of research indicating we should certainly be concerned about the links between what’s in our environment and increased risk for breast cancer. So I wonder what your thoughts are of what you’ve learned since then.
Karen Joy: I think one of the naiveties of that study project was to look at affected women and rely on our memory of our exposures when we were at our most vulnerable. And what I have personally learned—without a science background, just by being there every day, because every day is a learning experience—is that the multiple toxic exposures that we breathe, that we drink, that we eat, the stress levels, the things that we do to ourselves and the things that are involuntarily put upon us really affect the developmental part of our life. In other words, in the womb or in our developmental years, we are most vulnerable to these multiple assaults. And there is a process and a mechanism that I personally believe begins that mutation of genes and injures genes and sends incorrect messages—so that maybe you’ll have cancer or maybe you’ll have Parkinson’s or maybe you’ll have an autoimmune disease or maybe you’ll have autism—and all of those potential, terrible possibilities are related directly to multiple toxic environmental exposures and they do affect us during certain windows of vulnerability, certainly during the developing years.
Heather: And we see more and more scientific reports supporting what you just said.
Karen Joy: We still have a long way to go because we’ve got to change industry and that‘s hard, especially now in a global economy. It all boils down to: scientists are good and doctors are good and carpenters are good. Everybody is good, but we must have shelter and we must have food. And if the majority of research is paid by the pharmaceutical industry and a scientist has to do the good work but he’s got to provide the shelter and food, it is understandable that he or she takes care of his or her family as this is going on.
So it’s been a very uphill battle to keep research on these environmental exposures, and that’s where more dollars have to go. We have to have a dual track here. We cannot only be interested in how do we fix the problem of disease. I’m in my sixties, and my children have given me three grandchildren—twins and a little boy—and I don’t want to look as my next grandchildren are born, or I look at these grandchildren, and think, “What chronic illness will you have?” That is absolutely not acceptable.
So if the movement can do one thing, which is to keep the focus on risk reduction through research, through policy and through personal care, then we’ve done a lot.
Heather: Do you want to say a little about your organization Prevention is the Cure, which does some of that work that you just spelled out?
Karen Joy: Prevention is the Cure actually says it all. We took on the “cure” word and wanted to bring it back to be a really primary, first action word. We have one project that we are very well recognized for. New York State has declared the month of May “Prevention is the Cure Month.” Our partnering groups, environmental groups, anti-disease groups, collectively run a myriad of free programs. Basically it is a no-excuse month. If you are only off on Wednesday night, if you only have Mondays off, if you have kids and you can only get out on a Sunday or Saturday, we have programs for kids and programs for parents, we have programs in the day we have programs in the night. We have programs every single day and they’re free.
And they’re about things that interest you as a person—whether it’s gardening, whether it’s cooking, whether it’s exercise, whether its about global warming, or whether it’s about dry cleaning. We think of creative ways to get our neighbors interested in taking the path to look at the ways they’ve done things yesterday, perhaps in their naiveté, and the way they need to look at taking care of themselves and their families as they move forward.
We’re targeting the consumer market that will demand greater access to healthier products and we’re making people aware. We can’t hide behind naiveté. So that is a big thrust of Prevention is the Cure. But throughout the year we speak at colleges, wherever we’re invited. And we ask again, keeping that model in front of us, “Who are the stakeholders there? What would interest them? We listen first and then we provide information that is stimulating for them.
At the end of every outreach there is always a “get” —because we were taught that you don’t just give, you also have to get at the end. So the “get” at the end is that you need to get involved. You need to make a commitment that you’re going to make one of these changes. You need to tell ten people the one thing that you learned today that’s important. Because as you spread the word you’re doing the activist work that the activists can never do without you. So there’s always a give and a get.
We developed a Toxic Trigger Chart, which is really wonderful. It’s three columns and its beautiful, because we know that if we want to deliver information we’ve got deliver it in a really, really nice package so that people will want to read it. The first column says what the triggers are of the disease; the second column tells you scientifically what the known or suspected health risks are that you’ve now imposed on yourself and your family. But the third column is the most important column, and that is the alternatives. Because never go out there and point doom and gloom without giving alternatives to buy.
The last and most recent of our products is from one of our sister groups in Nassau County. It’s called the Student and Scientist for Research program. We’ve contacted high schools in our area and we offer — through competition or any manner that the science department wants to engage their students in— that we will pay and connect a student with a world renowned environmental researcher anywhere in the country. We will work to make sure that student is housed and comfortable for a weekend, for a week, for a month, and has an internship with a world renowned scientist at a world renowned research center. We were able to pull that off this year following the footsteps of our Nassau County sisters.
If you take everyday as a learning experience, and I have learned everyday in the last 20 years more than I learned in the first 43 years of my life, it’s been a very exciting experience and I hope to learn more and contribute.
Heather: My last question for you is: if women really put our hearts and minds together and we could really find ways to collaborate and be creative and share our knowledge and our inspiration with the goal of creating a healthy environment, what do you hope we could accomplish?
Karen Joy: Number one, most definitely we’re going to give people choices. So communication is the key. Women are known to be such good communicators. So if across the country there is a mechanism that puts us together and there are voices, a tapestry of color and interest and resources, then we are going to deliver that message in an empowering way that makes people feel, once born, they have choices in their life. I think empowering people and centering people is our most important legacy.
Public health is right up there at the top. I definitely believe that as our voices collectively soar to the tsunami of a lifetime, we’re going to keep that iron triangle going. Policy makers will be hell-bent on being responsible. They’ll get the message, we’ll get research, we’ll change industry. And we will be able to provide a legacy for our children and grandchildren, and that, to me, is powerful.
