Post from lungcancer.net, Expanded: My Trip to DC for LUNG FORCE Advocacy Day

I have a second blogging gig these days. I'm now writing for lungcancer.net, a new website that is building a community resource. The organizers have reached out to several notable lung cancer patient advocates, and I am proud to also have been asked to write for their site.

In April 2017, the American Lung Association sent me to Washington DC to represent New York State for their annual Advocacy Day project. Lung cancer patients, survivors, and caregivers from all 50 states gathered to go to Capital Hill and lobby our Senators and Representatives. We all asked for the same two things: increased funding for the National Institutes of Health, and quality and affordable healthcare for all Americans. We also had a heck of a good time.


Here is a link to the post I wrote about my experience for lungcancer.net:

"What is it like to lobby Congress? You want to make a good impression, so business attire is best, but be ready to do a lot of walking and wear comfortable shoes. You will probably be meeting with staff rather than with the elected official."

I didn't lobby alone. New York was also represented by Kristina Wieneke, the ALA's Policy Director for NY, and by Mike Seilback, Vice-President for Policy for the ALA Northeast. It was a pleasure to work with two friendly, knowlegable professionals who are dedicated to protecting everyone's lungs.

   

We had a face-to-face meeting with Representative Elise Stefanik, who represents NY-21, the district I live in. She was friendly, very supportive of the NIH, and discussed health care issues intelligently. In the end, however, she voted in favor of the House bill that would result in 23 million Americans losing health care.



Me, up close and personal with an Alexander Calder in the Senate Office Building.


After the work was done, the group had a party complete with the opportunity to be silly.


I also had the opportunity to contribute to a video made by the American Lung Association about this year’s Advocacy Day.



Another very special part of the event: connecting face to face with other lung cancer patients and survivors who are Facebook friends and who join in on the #lcsm Twitter chats. My first gathering on the evening I arrived was a #lcsm meet-up! Here from left to right are Anne from CO, Candi from NE, K from Hawaii, me, and Dora from WY.


This trip happened almost exactly one year after the solo trip to the DC area that I wrote about as Anita’s Excellent Adventure. There was a big difference this time, though: I was unable to stay with my daughter due to my busy schedule which precluded commuting. She was also busy attending the big AACR conference that was happening in DC at the same time, and when we checked our schedules, we had only one time we could meet: lunch on the day I flew in.

The universe decided that this was not enough time. After lunch, I walked from the Chinatown Metro stop to the Lincoln Memorial, where I wept as I read Lincoln’s timeless and timely words. I then walked back to the Metro to go back to my hotel. There, in the random Metro car I walked into, sat my daughter, with an empty seat beside her. I had several more precious minutes to be with her again.

This still was not enough time for the universe. At 1 A.M. on the day I was to leave, I got a text message that my flight was cancelled due to storms. I rescheduled the flight for later in the day, but when I got to the airport, it became clear that nothing was flying out of DC that day. I rescheduled my flight for the next day, got on the Metro, and spent the night with my daughter and son-in-law. That was enough time, at last, and the clouds parted, and I flew home safely the next day.

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