years later. Just because we have reached that stability, or ‘no evidence of active disease’ where we have progression-free survival…you know…it’s under control, we need more control for people who have reached that metastatic stage…because that is the only breast cancer you die from. Celeste: How may the public support your goals relative to metastatic breast cancer awareness? Jamil Rivers: People need to understand that metastatic breast cancer is not an outlier, it is not something that is a rare occurrence, or something that happens to the few, and far between. This is how you die from breast cancer… you are not dying from when the tumor is still in the breast. So, when you are thinking about organizations that you are supporting, what are they doing with those dollars? Is there transparency in how they are using those dollars for investment, and what is the ultimate impact? If we are just shifting the same dirt around on the floor, then we are actually not making any progress…then those aren’t true investment viability of those dollars. What is actually going to be an impact to solve at stage IV? We as advocates, have no more acceptance for the status quo, but really pushing on how we can use resources in order to provide dynamic change to the landscape, instead of just kind of rehashing the same old solutions, using the same investments in solutions and not really having any significant change. Metastatic breast cancer is not a rare disease, metastatic breast cancer is when you die from breast cancer. There has been some progress made over the past few years and some people can live for five years, but not everyone, and our median survival rate still stands at 24 months. That is unacceptable. We still have 115 people that are succumbing to this disease every day and there has to be more public awareness, research investment, and being more scrutinizing as to where that investment goes in order for us to have more impact on the change that we want to see. Celeste: Are there any final thoughts that you would like to share? Jamil Rivers: I would also say the equity is important as well. Just thinking about how we could reduce the 27 amount of deaths due to metastatic breast cancer if there is more emphasis on making sure that we eliminate bias and racism in our healthcare system, or having accountability measurements and mechanisms in order to make sure that people are not receiving substandard care. That would also improve the death rates when it comes to metastatic breast cancer. Just thinking about some of the bureaucracy that we have in some of our public health systems, why is it that we just have these ridiculous waiting periods for people to access their benefits, or they have to be destitute without any type of resources before they can receive public assistance, and be eligible to have their coverage, for their treatment for metastatic breast cancer? We should have interest outcomes…if we would just get out of our own way and think about the investment that it would take to make sure that we have access to the immediate coverage that is needed instead of all of these nuances where if it is an oral treatment, then it is not going to be covered, but if I am hooked up to a machine, then it would be covered by my insurance. So, thinking about what is most conducive for living with this disease longer and having better outcomes for all people, we have to shift our thoughts about how we are really investing dollars and resources in that public awareness, because ultimately we are trying to eliminate people dying from this disease…and the way we do that is with more research investment going for metastatic breast cancer. So, metastatic breast cancer is the one that you die from…the therapeutics, the treatments, and the investments have to go there…and it also includes having accountability when it comes to standard of care. Celeste: Thank you. *To learn more about METAvivor, go to https://www. metavivor.org/.
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