Fran Visco Video (Text Version)
Session Title: Closing Session – Bringing New Ideas into Reality
Title of Presentation: Activist’s Perspective
Dennis Slamon, MD, PhD, University of California, Los Angeles: Fran Visco really needs no introduction from—from me or anyone else with regards to this program. It’s—she and her colleagues are the reason the program exists. The incredible staff of the DoD who implement the program have worked hand-in-glove with the National Breast Cancer Coalition to make this program a reality and I think for any of you who attended any of the sessions over the course of this meeting you can see the maturation of the science and the actual translation of some of the things that have been—some of the seeds that have been planted so many years ago really coming to fruition. I—in my opinion, I’ve been to all of them; this is the best Era of Hope that I’ve been at with regards to content and science.
So having said those positive words I’ll turn it over to Fran to tell us how bad a job we’re doing and let us know where she’d like things to go.
Fran Visco, Esq., National Breast Cancer Coalition: Thanks Danny. So I lost the pool; I thought there would only be 10 people here at the closing session. But I’d like to ask if the audience members who are Advocates would you please stand? So a couple of points; one, you deserve recognition and you deserve applause and you’re the majority of the people in this room, so I thank you very much for staying here for being so interested in and a part of this program that you’re here to the bitter end.
So I want to start by—okay, I’m not sure the right slides are up but I’ll do the best I can because this was supposed to say Activist’s Perspective because I’m a survivor, but I think more importantly I’m an activist with a mission to end breast cancer. And I wanted to start by going back to Tuesday night when we sort of set a context for the rest of the meeting when we set out the information—the reality of breast cancer, the facts about breast cancer, the statistics about breast cancer because we just spent the subsequent few days listening to and discussing science and research in breast cancer but to a large extent in isolation. This particular investigator presenting her particular work, and I think it’s very important to go back and remember from a broad brush why we’re doing this. And we’re doing this because breast cancer is a devastating disease that affects 1.4 million women a year globally and 500,000 women globally will die each year of breast cancer. And those numbers will continue to rise despite the DoD Breast Cancer Research Program—it looks like in the near future.
So these are some slides that you’ve seen before just to talk about incidence and fluctuations in incidence in breast cancer in the United States and we know that this year there will actually be 266,000 women diagnosed with invasive and in situ breast cancer and 40,000 women will die. And if we look at the breast cancer mortality rates in the United States and we see that there has been a reduction in mortality over a number of years to the advocacy community that is a slight reduction in morality and there are many debates about what brought that about and much controversy about why the rates have gone down—gone down albeit very slowly and very slightly every year.
But there are many questions that still need to be asked to try to figure this out. And if you look at—to me this is one of the most disturbing pieces of information—if you look at female breast cancer incidence rates by stage you see that the diagnosis of advanced breast cancer of stage four breast cancer hasn’t changed since 1975. Despite all of the screening programs, it hasn’t changed since 1975. So there are a number of issues that I think have been raised at this meeting that can help us look at these statistics and try to figure out how to change them. But I think that we can have all the debate we want and we can look at some of the information we’ve heard. You know one of the other surprising pieces of information I heard was that you know in African American women the morality rate was lower in the early ‘50s before the implementation of screening. Well you know what’s that about and what does that mean?
And we can continue to have those kinds of conversations and that maybe it’s very important but what we really need to do is we need to change the conversation in breast cancer because we need to focus our resources and by resources I mean the incredible individuals, their minds, their time, and the advocacy and in the scientific community on the issues that will really mean the most to all of us and that is the end of breast cancer. We can't be pulled aside by issues that are really not going to have a significant impact on breast cancer and I can speak for over an hour about this screening debate alone but that is not the conversation we should be having and I don’t want to have that conversation.
So I want to talk though a bit about given what this program is—I want to talk a bit about the role of advocates and the role of advocates in the mission to end breast cancer. Now you know advocates have to learn; they have to learn the science if they want to be part of this program and if they want to be a part of collaboration with the scientific community, they want to help set a research agenda, if they want to move that agenda forward—it’s incredibly important for advocates to be educated about science—the language, the concepts, the process. And of course one of the ways in which to do that is to be trained by NBCC’s Project Lead. And there are many Advocates who are here at this meeting who have had Project Lead training and can talk to other advocates and scientists about what that is. But it’s a very intense training but it truly grounds you in the language and the process, and it enables you to make a meaningful contribution to research in breast cancer. And we need to make certain that more and more advocates are trained and able to participate at that level.
But our role is also to challenge you and to challenge one another. We cannot be here simply to nod and be grateful; we have to be able to challenge you to question, to question and be skeptical about everything we hear not just from other advocates but also from scientists and researchers and policy makers. And our role is to collaborate, to collaborate with other advocates, to collaborate with scientists and researchers so that what we’re doing, where this money is going, is really going towards issues that make a difference to us that we help decide what those are, that we help design research, and bring our perspective to the scientific community.
I got an e-mail not that long ago from Greg Hannon just yesterday saying how incredibly important it is for us to be here and to continue to do that because he said I would not believe how insulated the basic scientific community is from the impact of the work that they do on breast cancer and really the toll that breast cancer takes and what we need to do in an overarching way.
I think that we’ve learned that over the years about how important it is for us to be here and be a part of it. It’s important for us to be here to explain not just to advocates and to scientists about what’s important but to explain about science to the public when we leave here, to make certain they understand and know how to critically analyze the information that they get—the information that comes out of this meeting, the headlines that they see in the paper, the morning talk shows where there is so much misinformation. And you heard yesterday from Glenn Begley how much bad information, how often there is bad information in the scientific literature. And we know that that’s been reported on a bit more frequently in recent times. And so these are the kinds of—we cannot depend on that information to make our decisions to help set policy to educate our constituency. We need to be able to critically analyze that information—not just listen to what a scientist tells us it means but to incorporate that as one piece of information but we need to be able to critically analyze all of this information so that we’re putting our efforts in the right direction—we’re allocating our resources, our minds, our time, our dollars in the right way.
And we’re here to be overseers. We are oversight. We don’t have an agenda. We don’t have—we’re not—you know we go to Congress and ask for increased funding we’re not seen as self-serving. We have one agenda and that is to end breast cancer and it’s our role to really be oversight over the funds and over the—the scientific process and research in breast cancer. So let me talk very briefly about why the DoD BCRP—how did it happen?
Well it happened because of the National Breast Cancer Coalition in 1992 as its first campaign to try to bring more money to the scientific community, but only the money the amount of money that the scientific community could spend well. Many of you know the story of how we figured out what that amount of money would be that year—that it wouldn’t be wasted; the science was at a certain point where it could be well spent. That’s the kind of thought that went into this. And then we lobbied Congress to increase federal funding by $300,000,000—from $100,000,000 to over $400,000,000. And we were successful and that launched the DoD Breast Cancer Research Program with $210,000,000 from the defense budget. And there is a lot of stories behind the details of how that happened, the fight of some people to get it moved over to NCI, why we decided to fight to keep it in DoD, and we all know that it has been an incredibly successful program in terms of the collaboration with the advocacy community and the mechanisms that it has designed that give the scientific community the freedom to ask questions within certain criteria to push innovative, high-impact science.
But what is the mission of the DoD BCRP? The mission is to end breast cancer. The mission is not to get money to the scientific community. It’s not to fill gaps or raise the pay line from what NCI has; that is not the mission of the DoD BCRP. It’s to find those scientists and those ideas and those advocates who embrace the mission to end breast cancer who have innovative ideas that will have a huge impact and who will understand the role that their ideas play in achieving that mission and be willing to work with advocates and other scientists to make certain that the work that they do is only a piece of the overall plan and strategy that we need to implement to end breast cancer.
So that is really the point of the DoD Program.
I’ve seen often and heard often scientists speak and I just had this conversation earlier this morning with someone—about you know the incredible progress we’ve made and when we—I asked more about the progress it’s that we—the technology is getting better. We can do things more quickly. We can do them more cheaply. And the next time I talk to someone like that, maybe 6 months later or a year later or 2 years later it’s even you know we can do it even more quickly and we can do it even more cheaply. That’s not the goal; I mean the goal is to figure out how to take these tools because that is what they are—they’re not the end-game, how to take these tools and technologies and apply them in a way that will really have a difference. But it’s even more complicated than that and I just want to very quickly talk about you know David Walt’s presentation this morning which was incredibly exciting. One of the other innovators that’s been funded by the program, very exciting but it raises a lot of questions because what we don’t want to do for example is have a tool that finds an abnormal cell in every single healthy woman and then someone will commercialize an intervention that will have toxic side effects for healthy women—the vast, vast, vast majority of whom will never have lethal breast cancer. And so we have to be very careful.
And when I said that you know the person said back to me, well we can't stop knowledge. You don’t want to stop knowledge but what we have to do is make certain it is part of that overall strategy so that we’re applying it in a way that really makes an overall difference for women. So we have to be careful; it’s complicated and advocates have to be a part of that process.
So just let me talk very quickly about we’ve given you the freedom with the DoD funding to ask the questions, decide what the questions are; we’ve simply asked you to adhere to certain mechanisms but we’re a bit frustrated. I mean we’re frustrated because we see a lot of improvement in tools and technology, a lot of progress, but we don’t see a change—significant change in those statistics we started out with and those statistics as you know represent millions and millions of women. So very quickly I want to talk to you briefly about the National Breast Cancer Coalition vision and we have set a deadline campaign, the End of Breast Cancer by January 2020. And we have a plan of action—not just words—to get there and we’re engaging different stakeholders to focus in two areas. One is how to prevent breast cancer metastasis and deaths from the disease. And the other is learning how to prevent the disease from developing.
The vast majority of what we do with this program and every program in response to the proposals is find the next drug. We want to focus through our efforts on primary prevention and preventing metastasis. And very quickly I want to mention to you one of the strategies we have is our Artemis Project which is the collaboration of advocates, researchers, industry, regulators, policy makers, and even the media to develop a 5-year strategic plan, development plan for a preventive breast cancer vaccine. And we’re working across a number of issues and with a number of different individuals and these are the four areas we’re focusing on—identifying the right targets, looking at the immune system, having a development in hand for efficacy, what are the end-points we’re interested in, who are the populations, and development plan for safety and this is about almost 2 years old, a project that we’re doing and it’s moving forward quite quickly and we’re very happy about it.
So I hope that you will all become a part of Deadline 2020 and I just want to end by saying that you know people ask me all the time how—how can you set a deadline for breast cancer? What if you fail? And we can't be afraid of failure and you can't be afraid of failure. That’s not what should drive us. I mean we already have failed because you look at those statistics and you know we’ve failed. And so you cannot let failure drive you. So we—the reality is that you know we’ve all accomplished things in our careers and we’ve all—some of us have accomplished a lot but we really haven't succeeded. And so what we’re asking of you is we’re asking you to be selfless, we’re asking you to be bold, we’re asking you to be innovative, and we’ll fight to continue, the DoD Research Program. We fought against much opposition year in and year out to make this program continue and we will continue and increase those efforts because as you know it’s getting more and more difficult. But we will continue those efforts, but this is what we need from you. You have to do what’s right for all of us; you have to be bold and you have to be fearless. And together we will end breast cancer; thank you very much.