Joy Simha Video Text Version
Joy Simha; CDMRP Department of Defense; Young Survival Coalition:
Hello everyone. It's a pleasure to be here and speak to you. I came upon being in the Integration Panel-I qualify in many ways. I was diagnosed with breast cancer 16 years ago. Initially diagnosed at the age of 26. I was single. I didn't have any children. I immediately started finding gaps in the research at the same time. There was very little research done on young women. In 1998, we co-founded the Young Survival Coalition which is now an organization that represents young women who are affected by breast cancer. And, I took project lead in that very same year. The National Breast Cancer Coalition offers a consumers' education course that is an intense 4-day clinic (it was back then) now it's 5 days. You learn everything from basic science to epidemiology and all about the political issues surrounding breast cancer. It's a phenomenal experience for consumers. We are thrown into a very intense education course and we come out of it hungry to help. It was an amazing change in my life. It made me aware after I had been a 4-year survivor, after 4 years of survivorship, that I can no longer fight my own disease. That was something that was going to happen or wasn't going to happen but I could fight for all of the young women that we were losing and all of the women that I knew were not surviving their disease. So, this is a way to take the fight from an individual level to a more community level to better have a representation of what is important to consumers. I've been lobbying every year since 1999 for the DoD program, and I just want to make sure that everyone in the room understands that this money is not easy to come by. Women from across the United States spend a good amount of their own individual time fighting for this money. And, we consider it our obligation to also ensure that the money is being spent in innovative ways. So, it's not just about getting more money, it's about making sure the money is being spent the right way.
I recognize how lucky I am to be alive 16 years later to have married and had two children. And I also hurt when one of my sisters dies of this disease. So, that's why the moment of silence that happens in the beginning is so very important. It's to remind researchers who sit around the table and clinicians that what they're doing on an individual level is very important. But, as it affects the community, is also very, very important and to remind them of what topics are of interest to the people who are fighting this disease every day is of the essence in this program.
It's not just about our own experience; it's about the entire community's experience. So, as Capt. Kaime talked about in the early 1990s, grassroots advocates from organizations, just like the Young Survival Coalition, organizations across the country that come from all different types of diseases, all different types of cancers, have created a heightened political awareness of breast cancer specifically. In the fiscal year 1993, we were awarded $10 million to the DoD program. And since then, it's been a varied amount according to what's in the budget and what's needed. And it fell into the U.S. Army's hands to manage this program, and they've been doing it very, very well. The Institute of Medicine and other outside agencies have consulted to make the program the most effective program it can be. And, we work hard to fine tune it every year. So, currently, I do sit on the Integration Panel. And how that happened was I started as an ad hoc member in the Programmatic Review process and after a year or two doing that, I was asked to sit on the Integration Panel. The DoD program has consumers at every level on it. We start out on the Integration Panel with vision setting, helping to craft the mechanisms, helping to talk about what is important to the community, and what needs to happen so that the mechanisms are fresh; are different so that we are attracting those researchers that can think out of the box, that can think about how we end this disease. And not just how we cure cancers in mice, because we all know that we can cure cancers in mice, but women are not mice. We need to find good cures for cancer that also relate to women. The release of the program announcement, the preproposal receipt of the ... we have consumers who sit on the Integration Panel and we also have consumers that sit on peer review and programmatic review. And so, we're hearing the voice of the consumer throughout. And, now, we also have these really incredible mechanisms that include consumer involvement. And, what we mean by that is true consumer involvement. If you are asked to list consumers who are helping with your research proposal, you are being asked to include that in the very beginning of drafting your research project. And, you are asked to keep them as an equal member of your research team. And that is very, very important because we see a lot of proposals coming in where they're sort of saying "yeah, we're going to talk to some consumers." That doesn't really cut it. We need to know that those consumers are important parts of making sure that your research proposal is going to address the mechanism. Those consumers can really help you with a fresh view of what the mechanism states and what your research is focused on doing and helping you to create a better project. So you need to embrace those researchers if you are going to apply for the multi-institutional mechanism.
Here we have a really nice graphic of how we all come together as one team, especially on the Integration Panel. There's really healthy respect that consumers have for the scientists and clinicians and that the clinicians have for the consumers. It's always very gratifying to me when we are trying to discuss a particular research proposal and one of the clinicians or scientists say "I'd really like to hear what the consumer has to say about this one" or they ask a specific question of the consumer sitting at that table to really understand what is relevant to the community out there.
So all these things come together - the state-of-the-science, looking at the research gaps, looking backwards and forwards as to what we need to see happen with the research moving forward. That's how we develop our vision. That's how we develop our investment strategy. That's how we figure out what mechanisms need to be developed. That's how we ask researchers to develop their proposals. So that they know that they're meeting the mechanism and that they're making an important impact in the end, in the lives of people who are fighting diseases.
So, we have the Programmatic Review process that includes the consumers, and we have robust discussions that take place about these applications. We are always looking for innovation, impact, and risk versus gain in the basic translational, you know the vision. We're always trying to find the researchers who will think out of the box. That's how we establish the program priorities and that's how we make our funding recommendations. Consumers really do participate in entire phases of the program, and you can see that those consumers are coming from many different parts of the country and many different types of advocacy organizations. Some of them are specific about specific diseases, some of them are from support organizations, and some of them are advocacy-only organizations. We try very hard to pick consumers who are aware that they represent a large group of people and that they are coming to the table with not just their own anecdotes but with the concerns of a larger group of people.
This is a picture of Greg Hannon who is one of the most forward-thinking researchers of today. Greg, like so many of the researchers that sit on the programmatic review process that I have met, always has wonderful things to say about the consumer advocates. You can read what he has to say, but I will say that at one of the last programmatic reviews as was leaving I was walking out with another researcher and they remarked that it was very gratifying to be a part of this process with the consumers that were selected for our particular panel. They said that it was so unlike the previous experience they had had sitting on another peer review panel. That the consumers in this particular case were very knowledgeable and were also able to contribute so much to the decision making process and that they had really done good work at the end of the day. So I felt very proud. Thank you.