Below is a story from a LIVESTRONG advocate that attended the One Voice Against Cancer lobbying day this week. You can advocate for resources and funding too. Call your decision makers and let them know you support cancer research and prevention funding. You can also go online and send an email through our website. Either way you are making your voice count in the fight against cancer.
I just have to say, the One Voice Against Cancer (OVAC) experience was great…I figured it would be…since the LIVESTRONG Day in DC in 2007…I have been 4 times total. It never continues to amaze me how the power of the story continues to “do the trick”
My connection to cancer is that of a survivor. Well…and being a veteran patient. I am being treated for my 3rd primary cancer in 14 years and for my latest cancer have already endured 31 rounds of chemo. Coming to OVAC got me to delay round 32!!!
I first got involved with LIVESTRONG during my 2nd cancer. I wanted to do something that would help but not take energy that was non-existent. I started by reviewing grants from a cancer survivor’s perspective. Wow….my experience had value. My story mattered. My suggestions were acknowledged. I wanted more…and have been doing so ever since. Summit, Pedicab Team for LIVESTRONG Challenges in San Jose, Presidential Candidate debate in Iowa, speaking at events, Assembly, LIVESTRONG Leader , and so much more. Cancer does not discriminate…neither does LIVESTRONG. That is my reason to stay involved. What we do makes a difference. You know…”obligation of the cured…”.
My advocacy work before LIVESTRONG is very limited. I was chairman for the survivors group for one Relay for Life. I raised the survivor count from 90 to 300…just by talking. I collected over $13,000 in in-kind gifts for survivors. But when it was over…that was it. No following up..no new challenges. I moved on to the yellow team and never went back. For me…YELLOW MEANS YOU ARE WINNING!!
The asks for OVAC were pretty clear. We need money. Congress has no budget for us. We need to sell them on why we area a priority.
- Fund cancer research at NIH, NCI and National Center on Minority Health and Disparities.
- Fund cancer prevention and early detection programs through CDC
- Fund Title VIII Nursing Programs and Patient Navigation
- Fund cancer programs for children
- Fund cancer approval through FDA.
So as we go into a meeting we split up responsibilities. Introduction of who we are. Survivor story. Telling them what we want. For me…easy…survivor story. I have 14 years worth. So I choose an ask…and tell a story of why that is important not only to me…but all patients and survivors. This year I chose #5, Fund cancer through FDA. I tell them a little about my experience so far and then talk about the drugs still “in the vault” at the FDA. I have had 3 protocols. A, B and C. So if I do need a “D”…is the drug released? Is the funding such that there is not enough personnel at the FDA to complete paperwork to get the drug to market? We need the drugs that research has come up with when the 7-10 year lock up is complete. Is waiting 13 years ok? NO!!! How many people could benefit by timely releases of a new drug? I could. Then silence and the eye to eye, face to face pause to make sure they heard. They always do and I believe they will remember.
OVAC overall is a “happening “. We don’t stop moving. We start with 5+ hours of training. We break into groups according to states and strategize our plan. We received packets and schedules of who we will have the opportunity to influence. We are all passionate. We already know what to say. And if we are lucky, it is a repeat visit…and we are remembered.
LIVESTRONG does a great job organizing and planning and strategizing before we even get there. Then we are ready to go into action right away. We are a team who knows why we are there. We know what we want. We are well equipped to answer questions. We stand out in the crowded room. We LIVESTRONG and we are passionate. They could not ask for more.
I am Team California. Our people get it. They want to help us. They believe in our requests. What a gift!