Researchers have told me time and time again that it is extremely difficult to get seed money to fund new ideas. Organizations that give large sums of money for research expect a reasonable chance that the research will be successful, and thus, tend to fund studies that explore ideas for which data has already been collected. Therefore, in order to show that an idea has merit, you must have some data. And you need data to get money. So, how do you generate data with no money?
I’ve been living with metastatic/stage IV breast cancer (MBC) for seven years. During that time it has become abundantly clear that the facts associated with MBC are not only rare and hard to find, but that they are often not corroborated and/or not current and/or misquoted and/or illogically used. Often, MBC facts are just plain non-existent. So this year for Metastatic Breast Cancer Awareness Day x 10 Day 3, I am asking those who actually collect the data .. or could collect the data … or should collect the data… or who are tasked with reporting the data… to do what is necessary to bring clarity and accuracy to metastatic breast cancer statistics, starting with the five topics below.
Dear Scientific Researcher,
What you do is extremely important and provides hope to those like me living with metastatic breast cancer. The projects you choose, and the collaborations and advances you make, can be vital to ending the set of diseases known as breast cancer, thereby saving thousands of lives in the future.
I have met many of you on various review panels and have sat in the room with you, discussing the strengths and weaknesses of proposed breast cancer studies. You bring in scientific viewpoints; I bring in the views of the community, particularly the views of the patient advocate. Sometimes you get wrapped up in the elegance of a specific study and shift uneasily in your seats when I ask: “So how does this study help us save lives or prevent the disease from happening in the first place?”
Today is Metastatic Breast Cancer Awareness Day (MBCAD) … one day for the roughly 40,000 of us dying each year of the disease. One day for the estimated 73,000 – 86,000 diagnosed annually with our disease. One day for the unknown number of Americans living at any given time with our disease.
We deserve more. Much more. We are 30% of the breast cancer population and we deserve 30% of breast cancer research funding; we deserve 30% of breast cancer support activities; we deserve 30% of Breast Cancer Awareness Month (BCAM). Thus METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month. We are claiming Oct 13th – Oct 22nd … 10 days instead of one.
Stay tuned to this page for new information coming out every day for the next ten days. Let our voices be heard!
When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV’s and a catheter while he hung in a tenuous coma for over a month. Mom had sat by my grandfather’s hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.
