cancer. So, instead of just focusing on screening and prevention…and yes, it is great for it to be detected early to let you have basic treatment options…but that is not going to eliminate the risk of death later, so we do need to have more focus on research and developing treatment and therapies for metastatic breast cancer…and just finding it early…or having chemo early…or having radiation, and things of that nature, is not going to eliminate the risk of death later, or the risk of breast cancer becoming metastatic later. We are finding now that metastatic breast cancer is very similar to what we find with HIV/AIDS, where cells travel through your body and your bloodstream… the spread of these cells are what make the breast cancer metastasize to other organs in the body…even after the breasts are removed, and even after you have received chemotherapy and radiation. So, it is really important for folks to understand that metastatic breast cancer requires ongoing treatment, maintenance and monitoring…chemotherapy and treatment will not completely eliminate or cure the disease. Right now, there is not a cure for metastatic breast cancer and it is a very complicated cancer to solve. Our best hope is to transition the disease from terminal to one that is chronic with a good quality of life. Make it a disease that is something that we can live with…and is managed, similarly to HIV/AIDS…we need more public attention and research dollars to invest in the therapeutics that are going to sustain life with metastatic breast cancer. Right now, men and women living with metastatic breast cancer literally live from one treatment bridge to the next, until they run out of options. Celeste: Relative to your organizational goals, what are the major successes, and what are the goals that you may consider most challenging? Jamil Rivers: I think the biggest thing is that we have had great success in bringing more public awareness and funding $23,150,000 in metastatic breast cancer research. We have also funded about a million dollars in research to determine why people of color have poorer outcomes when diagnosed with metastatic breast cancer. We are eager for our research to transition to clinical trials. It is what we look forward to the most. We do not fund prevention of metastasis. While there is a place for that, many organizations count that toward solving at stage IV, and that isn’t what we do. METAvivor funds research that can help me and others living with metastatic breast cancer. It is not just a lip service to say that it is metastatic, or use it in the title. It is going to have clinical utilization within five years. It also benefits people with metastatic breast cancer. So, it's not just a research into hoping that we don’t get to that stage, but actually viable treatments and therapeutics for metastatic breast cancer folks to know that this is something that could be beneficial to them, and life-changing, meaning that it has an impact on their disease. This is certainly what sets us apart. Our existence also puts that pressure on other organizations to follow suit…us being able to set the standard as far as what is considered to even be metastatic breast cancer research, I think is very important. It is important to make our community aware of what that actually entails…and then making sure that the general public also understands what this all means. What is metastatic breast cancer? What are the implications? Are we really making the progress that we say we are? As patients, we like to hear that new treatments have a greater progressionfree survival rate, but what we really want is overall survival rates to change. That means fewer of us are dying. Some of the biggest challenges are that we have had organizations and companies where breast cancer is a big business. We have these companies that have been around now for 25, 30, 50 years, and have made little progress toward solving stage IV breast cancer… but we still need more progress when it comes to metastatic breast cancer. 30% of early-stage breast cancer patients can and do become metastatic 1 month to 20 years after diagnosis. Some may say, ‘wait a minute’…we have people that don’t reach metastatic disease for 10 or 20 years? Yes, that is true, and yes, that is still dying from metastatic breast cancer, even if it is 5, 10, or 20
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