Just as Advocacy is about telling your story and sharing your voice to affect others, there are times in your life where the stars just seem to align. That is when you must seize the moment with the intention to move the needle in the direction that supports and offers resources to more and more people like yourself. This is the main reason why Cancer Survivors make, sometimes, the best advocates for issues pertaining to cancer itself. However, as a survivor who recently lobbied at the Capitol with Komen and the BHCT for one day and then for the American Cancer Society the next, I can tell you from experience that non-survivors sometimes don’t know how to react to a survivors story. This is where the divide continues to make itself as plain as day that those personally affected by cancer can and will make the best advocates for issues pertaining to cancer.
On the first day of lobbying, out of our group there were only six breast cancer survivors among us. I made a suggestion that we all split up so that we can use our story during our office visits at the Capitol. Personally, I start a sentence with, “as a survivor, I …” comes with weight because not only have I actually gone through the news that I had cancer, but also the treatments including chemotherapy, radiation, fear of the unknown, depression and anxiety. Co-survivors are those that are there during our experience, but they are innocent bystanders to what is really happening to the cancer patient. As such, the weight of our opinion in matters of healthcare legislation as it affects our community is lofty.
But what happens when a cancer survivor says something that the others hadn’t planned on? For example, as a strong advocate for breast cancer research and prevention, I was invited to promote media interviews for the Komen Tissue Bank as the goal was to fill 200 appointments to gain healthy breast tissue for the Tissue Bank. The Principal Investigators or PIs wanted to compare cancerous tissue to healthy breast tissue and they had nothing to complete the work! The opportunity to donate healthy breast tissue especially from those in minority groups proved to be a perfect storm for Houston since we are a melting pot. Baylor College of Medicine was the site for the incredible day that included more than 200 volunteers taking donors from happy station to happy station to ultimately leave with a cotton-balls worth of healthy breast tissue in which to conduct valuable breast cancer research. As a Komen funded research grant, this is the first opportunity of it’s kind to start changing the conversation from “You have Breast Cancer” to “Let’s see if you will have breast cancer someday.” That in itself is something to celebrate. Forget applauding, I was jumping up and down inside as I had to look the other way while Dr. Sedgwick quickly and almost painlessly extracted my donation that sounded worse that it felt. It was explained to me that the sound was the little vacuum as she turned the probe six times to take a small biopsy for research. I didn’t even need the ice pack afterwards, but it did bruise a bit. I didn’t care because I was providing my own cells for the PIs to hopefully continue their research because I believe that in my generation, cures will be found affecting future generations of women and men.
Back to the short office visits at the Capitol scheduled by the different advocacy groups; and when I brought up the Komen Tissue Bank, only one person in the room besides the legislative aide snickered and spouted, “She’s just a survivor.” As if that were a small task in which to complete. You know, survivorship. Interestingly enough, it was the aide that turned to me and says, Tell me exactly how the Tissue Bank works and what it was like being a donor. I did. The other person in the room finally sat back and listened. Maybe they were in horror, but it was all true and my testimony to how I needed to seize the moment for the sake of all 160 tissue donors that took their time to donate their precious cells for research.
Being ready for those moments continues to be a blessing because I am a survivor with a strong voice. For others that visit the Capitol because it’s just part of their job aren’t doing everything they need to do to get the message across. They must include survivors and their stories. Visiting the Capitol is about building relationships. It’s not about checking off the advocacy box. Survivors should be recruited, trained and given priority when advocated for cancer research in every legislative visit. Like I told the survivors during my last visit, let’s all break up and share our stories when possible to help drive the point across that breast cancer is not pretty. It’s a silent killer affecting one in eight women throughout their lifetime. That’s why I continue to lobby with many different cancer organizations and plan to launch a nonprofit specifically dedicated to recruiting and training those affected by cancer. Where do you think The Trifecta Effect came from? The Capitol itself when I was lobbying with the Alamo Breast Cancer Foundation in 2013 and an aide thought we were looking to add unicorns to the panel because he didn’t believe that scientifically trained cancer advocates even existed, when we were all standing right in front of him. Interestingly enough, I recently received the legislative priorities from ABCF and Priority #3 is as follows: ABCF is urging support of inclusion in HB 1952 a trained patient advocate, who represents a cancer organization with a patient constituency, on the Integration Panel, Oversight Committee and all other committees of the Cancer Prevention and Research Institute of Texas (CPRIT).