The past few days, I tried something new. I’ve considered myself a “patient advocate” for quite sometime time. My purpose in pursuing a career in physical therapy was deeply rooted in the belief that I just wanted to help people. I attribute that to all my experiences in community service growing up. We were sometimes forced to do it, but I always had fun doing it! Early on in Cub scouts, later through Team Sports Service projects, and later through college volunteerism I found that being active in philanthropy/ service projects satisfies an intangible need that can fill an empty space in your soul. Although faced with numerous physical obstacles, the fire to contribute to the community has not only gotten stronger but has become more focused. Surprisingly, this fire has been spreading to other individuals. The past few years, I have been meeting more people with similar beliefs/values about tumors/cancer. I honestly think that something big is brewing. I don’t know what it is exactly yet, but the seeds are being planted for something potentially BIG!. On Sunday, I had the opportunity to go to Washington DC to advocate with the National Brain Tumor Society to congress about 3 pressing issues in Brain Tumor Advocacy:
- Seek support/ thank them for supporting federally mandated Oral Chemotherapies Drug Coverage by insurance for drugs like Temodar. Support Cancer Drug Pairty Act (H.R. 1801)
- Seek support/ thank them for supporting the collection of bio-specimens in pediatric cancer patients through The Carolyn Pryce-Walker Conquer Conquer Childhood Cancer Reauthorization Act (H.R. 1553). This would lead to more research
- Support NIH Funding for future research. Increase National Institute of Health to $32 Billion. NCI, National Cancer Institute funding to $5.26 Billion to fund tumor/cancer related research.
We got to meet with California Senators and California House Representatives. I wanted to sit back and observe how they did things the first couple meetings. It was the first time formally advocating for something. We got to meet with Legislative Assistants, a Legislative Director, and a Healthcare fellow from the offices of Sen. Barbara Boxer (D), Sen. Dianne Feinstein (D), Rep. Mark Takano (D), Rep. Susan Davis (D), and Rep. Dana Rohrabacher (R). I was comfortable talking about statistics because I didn’t feel strong enough in my knowledge of the bills. Each meeting was only 15-20 minutes, so the “pitch” had to be structured and rehearsed. I realized how formal the attire was at the meetings. Definitely not the laid-back attire I’ve grown accustomed to in San Diego.
Since I started down the advocacy road, I have been focused on providing resources for patients and healthcare professionals. I’m starting to realize the importance of educating public officials about these issues. Advocacy is not only educating healthcare professionals and patients/loved ones, but also education of public officials so they can become powerful advocates for your cause. It is extremely important to find powerful supporters! I’ve been averse to politics because of all the “negative smear campaigns”. Don’t tell me why your opponent sucks! Tell me why I should support you!
Anyways, it was so cool meeting and hanging out with so many of my online brain tumor friends! I really got to give props to my friend Liz for encouraging me to attend the event in DC. She introduced me to the world of public policy. I was so excited to hangout with Monika, David, BethAnn, Jim, Ashley, Raechal, Sarah, Patti, Ron, and Pati U. I do realize that it is essential to “tread lightly” when it comes to the nonprofit sector’s interaction with politicians. I’m very cautious of that. I look forward to returning to DC to do more brain tumor advocacy! Perhaps I will return as a disability advocate to address legislative disability issues.
For now, I rest. I have a few more things up my sleeve… hee hee hee… STAY TUNED…