Here are a few tips how to get the ball rolling on advocating for new legislation to help improve care.
A few weeks ago, I attended the Young Adult Cancer Conference in Bethesda, MD. I had the opportunity to attend three amazing breakout sessions (including a session on living with cancer's uncertainty) alongside many other young adult cancer survivors and patients.
In this lunch and learn session, led by Critical Mass CEO, Kate Houghton, we discussed advocating for cancer action, specifically in legislation. She has some experience with this, as she was the mind behind HR2976: Deferment for Active Cancer Treatment Act of 2017, which I advocated for on Capitol Hill in June 2018. She shared with us three big ideas about helping legislation for cancer advocacy get signed into law:
As cancer patients and survivors, we often are on the forefront of the action and know what issues exist in this cancer space. When you notice a bigger, widespread problem that you want to change, use your voice and speak up. Simply put, legislators may not know that is a problem. It's not intended as a slight — they just don't know until someone tells them. You're a constituent; never hesitate to reach out.
When you do decide to reach out, you'll need a hook. Starting with your own story is powerful, and finding why it affects others takes it to the next level. Look into why this is a widespread problem and start formulating a solution. People like when you have a solution to the problem ready to go.
You'll need to find key influencers to help garner support. Who are these people and what influences them? Find their past bill support and see what their stances are on various issues.
After you have the support, you'll need to keep the ball rolling. Find what is most comfortable for you. Do you share your story or act as the voice of the masses? Being genuine goes a long way.
If you choose to share your story, be sure to practice. Make it poignant without getting overly emotional or angry. Make a statement while being civil. Leave a lasting impression — and a good one at that.
There is power in numbers. Be sure to collaborate with others who are trying to achieve similar goals. Just because you have different diagnoses or ultimate end goals doesn't mean you can't compromise to work together to fuel your visions. Find what is going to be successful and work towards that.
Seeing it through to the end
Ultimately, Kate said that it is not about getting 100 percent support. It's about a 51 percent majority to get bills to pass on. While this probably is a simplified version of what actually happens behind the scenes, when you're at 30 percent support, it is a lot more reassuring you're already more than halfway there instead of barely a third.
Finally, she also said that it is crucial to put ego and politics aside and to not let perfect get in the way of good. Maybe you're not a fan of whoever happens to be in charge of the government at the time or you're not getting absolutely everything you've been working for, but you'd be a disservice to the masses you're fighting for to turn down support out of sheer spite. At the end of the day, helping cancer patients and survivors get what they deserve is the fuel that keeps the fire burning and gets the laws signed.
Author's Note: In September 2018, the text of HR2976 was included in the 2019 Defense, Labor, Health and Human Services, Education, and Related Agencies Appropriations Act. It was signed into law and took effect on Oct. 1, 2018, along with continued funding for AYA cancer research. For more information, check out the full press release from Rep. Ros-Lehtinen.