Capitol Hill Advocacy

The past several months have been a whirlwind of travel for me and I’m way behind on my blog and can never seem to find the time to update it. In between traveling I’ve been trying to train for my big triathlon in July as much as I can, and have been kept very busy making tutus. In my last post I talked about the Spring Sprint Triathlon, my first triathlon back after a 2 ½ year hiatus. That race came right on the heels of a trip to Vegas for work … and believe it or not later that evening after the race I was back on a plane again headed to DC.

 

 

Spring Sprint Triathlon Complete!

 

 

Red-Eye Sleep Mask from JetBlue

In early May David and I attended an advocacy event called “Head to the Hill” put on by the National Brain Tumor Society. According to the event website:

On Tuesday, May 6th, brain tumor advocates from across the country converged on Capitol Hill to share their stories and advocate for public policy issues that are important to the brain tumor community. This year’s fourth-annual Head to the Hill Advocacy Day was our largest to date, with 135 advocates from 30 states attending 156 meetings with members of Congress or their staff.

This event sounded like a great way to get involved and make a difference in the brain tumor community, and also gave us a chance to visit David’s family. I managed to talk David’s mom into attending as well so the Allens were 3 of the 135 attendees and represented California and West Virginia.  The event started out on Monday afternoon with a training session on the three keys issues that we would be advocating for.

 

 

Brain Tumor Advocacy Issues

 

1. Oral Chemotherapy Parity – ensuring affordability of oral chemotherapy, the standard of care for brain tumors (more here)
2. Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act – a bill to improve pediatric cancer research and information (more here)
3. Appropriations for Medical Research and Drug Approval – ensuring support for brain tumor research and drug development (more here)

 

The following day we would be broken up into a group of California constituents who would be visiting Senators Diane Feinstein and Barbara Boxer, and then later California would be broken up into several smaller groups (because there were so many of us from California - go California!) to visit our representatives for our regional areas. In each meeting that we had scheduled there would be a set flow to the meeting with assigned roles for each topic. In the larger California group there were more of us than there were roles so I didn't speak, but in the smaller group I volunteered for the role of talking about the oral chemo parity act since that was one that is personally relevant to me. In our training we spent time going over the issues, assigning roles, practicing our parts, and role playing.

 

 

Advocacy Training Day

 

That night after the training we headed over to Nationals Park to meet up with David’s parents, brother, and brother's fiancé to watch the Nationals vs Dodgers game. It had been a beautiful sunny day … up until the moment we stepped out of the Metro station. It started raining, then raining harder, then pouring. Such a shame because we had great seats! We watched three innings before they stopped the game for a rain delay (We were soaked by this point!) and after waiting a bit to see if the rain was going to let up we ended up going home. We found out later that after a 3 hour delay (?!?!) they ended up continuing the game and finishing it. Um, sounds miserable.

 

 

Rainy Nats Game

 

The next morning we were up bright and early to meet everyone for breakfast before heading off to Capitol Hill. So much for my plans of running around DC... oh well! We were starting the day with a group photo on the steps of the Capitol before breaking up into our smaller groups and heading off to our meetings.

 

 

Headed to the Hill!

Car2Go Sighting!(My morning transportation to the train station in SD)

 

 

California Constituents

Head to the Hill Advocacy Group

 

Our first meeting was with Diane Feinstein’s office. A San Francisco legend!! She had a lot of San Francisco photos and memorabilia around her office which was really neat. She also had a bowl of California prunes, which we later saw was a staple in the offices of many of the California representatives. Who knew prunes represented California?

 

 

California Prunes - Did the CA Raisins retire?

For those who didn't grow up in CA in the 80s,
check out this video for reference to the CA Raisins

 

In this first meeting I felt perfectly fine until we got to the part of our presentation where someone shared a personal story. This woman in our group talked about her own personal battle with brain cancer, showed pictures of friends she had lost, and also said “I know that this is something that is going to kill me someday”. (She didn’t say this in our practice session the day before.) It took about everything I had not to burst into tears. That is something I often think about, but rarely say since I don't event want to acknowledge the chance of it. Hearing someone else say it so matter-of-factly hit too close to home. I thought that nobody noticed my eye-watering moment in the meeting, but it turns out that the woman who was talking did. After we left the office she came up to me and said something along the lines of – “Hey, I’m sorry that bothered you. You know that I only said that to get to them right? I don’t believe that is the truth. Doctors don’t always know everything. No one can predict when you’re going to die”. As a long term survivor (9 years I think?) I found her words fairly comforting, but I was still shaken up a bit. But … we moved on with our meetings and I kept it together.

 

 

Outside Diane Feinstein's Office

 

Well … I kept it together until one of our smaller group meetings with Susan Davis, our representative for San Diego. In most meetings we attended David was sitting by my side, but for this meeting for some reason he ended up across the table from me. During the meeting I was going through my part talking about oral chemotherapy and how it was something that I was on for a year, and how as someone with an inoperable brain tumor it was my only choice of treatment, and sadly there aren’t really many other treatment options. As I was talking about this I looked across the table at David and out of nowhere burst into tears. The gravity of my situation suddenly hit me, and I just lost it. I tried to finish my part but was sobbing through the whole thing. SOBBING! What a mess. Hey, at least I came through as passionate right? So embarrassing … We had one more meeting after that and luckily I had everything back under control and didn’t cry again, although I’m sure I had the rest of my group nervous about my emotional instability.

 

 

Busy Day of Meetings!

 

At the end of the day we had five successful meetings. In each meeting we found out that the representative either already supported what we were advocating for, or the staff member we talked to seemed engaged and interested in the issues we were talking about. After the day ended David and I talked about whether or not we thought our meetings made a difference, and we both felt that they did.

 

 

Team Allen Advocates

 

A few weeks after the advocacy event we received an email from the event organizer confirming our speculations. A number of co-sponsors were added to the Cancer Drug Coverage Parity Act and the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act soon after our meetings! For example, the first act only gained 4 co-sponsors between January – May 2014, but 6 more co-sponsors were added in the days following our meetings. Wow!

 

 

Capitol Hill with My Rappelling Friend Beth!

 

The whole event was really a great experience. It was well run, we enjoyed trying to make a difference, it was fun meeting all of the other advocates, and hey – we snuck in a trip home for David to see his family. If you are interested in advocacy work with the National Brain Tumor Society, you can find more information on their website.