Women die of breast cancer each and every day. It is unfortunate some need a "day" to remind them of that. Women do not die of primary breast cancer; they die when the disease metastasizes - when it spreads beyond the breast to vital organs. An estimated 90% of breast cancer deaths are a result of metastatic disease, either at diagnosis or recurrence. The average survival rate for people with metastatic breast cancer is 3 years, because treatments to cure metastasis do not exist. Despite claims of numerous advances in genomics, biomarkers and therapies, these numbers have never changed significantly.
There are different approaches to solving this enormous problem. For example, there is research looking for biologic targets in order to develop the next drug. There is a renewed emphasis on immune approaches to cancer, with some research into breast cancer. At the National Breast Cancer Coalition (NBCC), we approach the issue of breast cancer metastasis from multiple angles. We educate and train women and men, many with metastatic disease, to enable them to be at the table where funding, research and access issues are being decided, to influence and often lead the agenda.
We advocate for increased federal funding for research, including innovative research into metastasis. We work on clinical trials that will change the way women and men are treated for metastatic disease. And we bring a focus to figuring out the process and initiation of metastasis, to understand why it happens, how it happens and how to prevent it from happening in the first place. Because we not only want to see a cure for women and men who now have metastatic disease, we do not want anyone, ever to have to face it. But we're not there yet.
It is important to understand that NBCC does not fund research other than a few small seed grants. We bring collaborations together to look at issues in new ways, and develop and implement plans of action to answer overarching questions. Like how we can end deaths from breast cancer. So here are a few more specifics on what NBCC is doing to make that a reality:
The Artemis Project® for the Prevention of Metastasis Project
We believe we need to look at the issue of metastatic disease from a fresh perspective to achieve the goal of ending the disease. We want to complement the work we, and others are doing, looking at curing metastasis, with a different approach, with a focus on the process and prevention of metastasis. We must understand how to stop the process of metastasis as soon as possible; so no one ever has to die of breast cancer.
That is why, several years ago, NBCC gathered a diverse group of breast cancer advocates, scientists, and clinicians from across the United States, Canada and Europe to outline a research plan of action in this area. The collaboration, part of NBCC's Artemis Project, decided to focus initially on tumor dormancy (determine why/how breast cancer cells lie dormant for years and then re-emerge (recurrence) and the immune system. As a result of discussions and debate at our annual meetings, a few projects have emerged. Among them, a group of Artemis participants have begun testing how the immune system interacts with dormant disseminated tumor cells; those cells that migrate from the primary tumor site. Once it has been established that the immune system does play a role in keeping these disseminated tumor cells quiet, they will identify the key immune cells that are involved.
The Artemis collaboration also agreed that it was a priority to determine the genomic and genetic makeup of breast cancer that will progress to metastasis. So we are a partner in DNALand, that will result in a breast cancer database that will include clinical and genomic data from patients that will allow researchers to ask critical questions about breast cancer development, breast cancer recurrence and metastatic disease.
Clinical Trials Work
Clinical trial design, access and outreach, and most importantly, meaningful outcomes, remain issues of concern to NBCC. We have continued our collaborations on a number of key trials, including international trials that have involved our Beyond Borders Breast Cancer Project, including international Project LEAD® graduates. NBCC decides whether to partner with industry and investigators on a trial based on rigorous criteria including significance of the research question, rigor of study design and ethical conduct of the trial among others.
Project LEAD® advocates have worked on protocol and steering committees, data safety monitoring boards, have reviewed and edited educational materials, and have conducted national education and outreach for trials that meet our criteria. Some of the clinical trials that have been part of NBCC's clinical trials project include the pivotal trial on trastuzumab (Herceptin), palbociclib (Ibrance) and talazoparib (MDVN 3800), a PARP inhibitor. Additionally, I serve as a member of the Board of Translational Research in Oncology (TRIO) and work to include advocate involvement on many global clinical trials, including some in Phase I looking at experimental therapies.
Project LEAD® Training Program
Paramount to the success of Breast Cancer Deadline 2020®, and every effort surrounding the mission to end breast cancer has been the strong leadership and significant involvement of educated advocates. NBCC spent years honing our education and training programs so that there is a network of advocates - women and men around the world - who understand the science, work alongside researchers, and bring their critical perspectives to bear in order to make the right research happen. We do so through NBCC's Project LEAD®, science training for lay advocates.
Project LEAD® training has benefitted women and men around the world. Graduates lead the metastatic breast cancer movement as well as that of young survivors; they are peer reviewers at the highest levels of research and they are SPORE leaders. Many of the advocates in the Department of Defense Peer Reviewed Breast Cancer Research Program (DODBCRP), launched as a result of NBCC advocacy, are graduates. Advocates have influenced the development of innovative award mechanisms at the DOD BCRP and the research agenda at institutions across the country. Hundreds of advocates work with scientists on clinical trials and research projects.
These are just some of the ways NBCC works to end breast cancer and save lives. No other organization has done more than NBCC to effectively challenge and transform the status quo and to focus on ending breast cancer. Every day to us is metastatic breast cancer day. We remember always the women and men who worked with us, who we loved, who were family members and friends, and who died of breast cancer. So many of them have been part of our movement and were part of developing our strategy on how to end breast cancer and how to address metastatic disease.
So today, as I do every day, I remember and honor them by working to make certain no one else has to face metastatic breast cancer.