I can't believe it's taken so long for me to recap our incredible trip to DC, but that's life in the big (and busy) city!
For those of you who are thinking "What incredible trip to DC??", here's some background: I do advocacy work with the Lung Cancer Alliance, and what they do best is legislative advocacy. They work tirelessly to try and get more federal research dollars allocated towards lung cancer research. Currently, federal research funds are disproportionately directed at OTHER cancers and not lung cancer, the biggest cancer killer.
LCA invited me and my mom's sisters to travel to Washington DC in order to meet with our Congresspeople in person. Our aim was to try and convince them of the INCREDIBLE importance of co-signing onto the Lung Cancer Mortality Reduction Act, a bill that asks Congress to work together with other governmental agencies to come up with a plan - SOME kind of plan - to address lung cancer's dreadfully low survival rates - which have been stuck at less than 16% for over 40 years.
My aunts and I were part of the Massachusetts contingent,eight advocates strong who were all fired up to march up to Capitol Hill and talk turkey with our members of congress. Or something like that.
Day one, we attended a training session for those of us who'd never done this kind of face-to-face meeting before. It was led by the dynamic, compassionate and incredibly articulate Laurie Fenton, the President and CEO of Lung Cancer Alliance.
Laurie spoke to about 50 advocates assembled from states across the country, including California, Connecticut, Kentucky, North Carolina, Georgia and Washington. We heard from lung cancer survivors as young as 23 and as old as 73. We heard emotional stories from family members like me who came because they lost someone and feel like they have to do something.
That night, we got a special treat. We attended an ice skating show called Kaleidoscope at the Verizon Arena, a celebration of skating and cancer survivorship. The headliners included cancer survivors Scott Hamilton and Dorothy Hamil, as well as Olivia Newton-John.
It was thrilling for The Lung Cancer Alliance to be included among so many fantastic advocacy groups, all working to raise awareness of the different cancers. The show will be broadcast tomorrow - on Thanksgiving Day - at around 4pm on FOX- after the football game.
Day two was "showtime." We got dressed in our best Capitol Hill outfits, powered up with the free breakfast at the Embassy Suites, and met with our fellow advocates to come up with a game plan.
Since there were eight of us, we broke into two "teams" in order to make our way through the list of Representatives and Senators from Massachusetts. My team only had one actual appointment - that was with my Aunt Susan's Rep, Niki Tsongas. The rest we were just planning to ambush. Well, to call upon, unannounced.
We weren't sure what to expect. We'd been told that it was unlikely that we'd actually meet with any of the Congresspeople themselves - and we'd be lucky if their aides would even agree to see us without an appointment. Undeterred, we went ahead anyway. We thought, "We've come all the way here - it's worth a shot!"
Our first stop was actually to a Connecticut Rep because our friend Kevin Brummett was from Connecticut. Kevin lost his battle with lung cancer this spring and his widow Stephanie was with us. She wanted to pay Kevin's Congressman a visit. He wasn't in, but she left a personal note and we felt good about touching base there.
As we left the CT office, my Aunt Susan noticed offices for a South Carolina Congressman. She owns a condo down there, so we popped in to say hello. He wasn't in, but we left info and moved on.
Door number three was Representative McGovern, who covers areas including Worcester and Hopkinton. We had a connection to one of his constituents in Holliston and miraculously enough, McGovern was in his office and agreed to see us.
We had only gotten a few sentences into our "pitch" when he said "Count me in. I'll sign it." We were floored. Stephanie walked right up to his desk and thanked him,tearfully, sharing her story about how her 31-year old never-smoking husband lost his battle with lung cancer. He seemed genuinely moved - and sure enough, the next day, he signed on!
Next was Congressman Lynch, who represents South Boston, among other towns. He wasn't in, but his aide was, and she agreed to hear our stories. She shared with us that she'd lost her grandmother to lung cancer. This is what happens so often when you start talking about lung cancer. Lung cancer touches so many people, you're bound to meet someone who's been affected. This obviously wouldn't sway Rep. Lynch's decision, but it helps us talk to his aide when she has a personal connection. She gets it, even without us telling our stories. Of course we did anyway and shared with her all of the shocking statistics - and when we left the office, she promised to share our information with the Congressman and encourage him to consider co-signing legislation.
After that was MY Rep, Michael Capuano who represents most of Boston including my district in Charlestown. We knew he wouldn't be in because he's currently running for Ted Kennedy's seat in the US Senate and the election is just weeks away. We'd tried to get an appointment with him beforehand since two of us are constituents, but no luck. So, we showed up anyway. His very nice aide Jared chatted with us for a while, and then we got a chance to meet with his legislative aide who was very sympathetic and compassionate. I've since emailed the Congressman, so I hope we'll have his support!
Next it was time for a coffee break! We headed to the cafeteria in the basement which was actually kind of exciting. Congressmen and women have to eat, right? We weren't sure who we'd see, and we didn't really see anyone we knew, but it was nice to take a break and power up with some coffee and cookies.
Niki Tsongas was our next stop. We had an appointment with her health aide, and we'd heard that Niki herself might make an appearance. Her health aide was wonderful. Not only did she listen compassionately, she asked a lot of questions - great questions - which made us realize that she was seriously considering this bill.
She seemed shocked at the statistics and deeply moved by our plea. We were deep in discussion, when in walked Congresswoman Tsongas. She was very gracious and also listened intently to our stories, the statistics and the explanation of the bill.
She shared that she had actually lost her mother to lung cancer, which we hadn't known until then. Before we left, she said that the bill sounded like something she would sign, but that her team just had to review it first. Our fingers are crossed.
Feeling empowered, we went onto our next unscheduled stop - Congressman Olver, who represents the western part of the state. We met with his health aide and told her about Sara Monopoli, the sister of one of Congressman Olver's constituents. Sara lost her life at 34 to the disease - just 9 months after giving birth to her only child. His aide was incredibly compassionate and shared that she, too, had lost several members of her family to lung cancer. She said "I can't see why he wouldn't sign this bill"- and the next day, he had signed it!
On a roll, we headed down to Congressman Delahunt's office. He represents the Cape and the South Shore. I've heard he's a nice guy - and his aides were very sweet - but they were firm that without an appointment, we couldn't talk to anyone. This was the first and only time that we ran into this kind of stumbling block, so it didn't really faze us. We figured we'd talked to enough people in one day! We left our info and moved on.
We left Capitol Hill feeling elated. It was such an invigorating feeling to know that we'd spoken with people who can actually affect change. As Laurie Fenton had told us, this was "pick and shovel work" - asking Congresspeople to co-sign onto a bill, one member at a time, just for the hope that we can get it to the next step.
Pick and shovel work. Not totally glamorous. Nothing that happens overnight. But necessary work. Important work. Inspiring and invigorating work.
One legislator at a time, we'll get through to them until we've got everyone from Massachusetts - and with the work of LCA, hopefully we'll get most of the US Congress to sign on. Then, hopefully it will get it into hearings - and eventually passed as a bill so that we can finally start to see a difference in those devastating mortality rates.
Before our trip, only one Congressman from Massachusetts had signed on: Barney Frank.
After our trip, this is where we stand today: One senator from Massachusetts (Kirk) and five Congressmen (Neal, Olver, McGovern, Tierney and Frank) have all signed on.
We're still working on Capuano, Delahunt, Tsongas, Markey and Lynch. How amazing would it be if Massachusetts was the first state in the union to have all of its congresspeople sign on? It would certainly show that this state cares about lung cancer. Being one of the regions with the most exciting and innovative lung cancer research, it would make a lot of sense.
Congressmen and women, are you reading? Could you sign on?
Even if you're not a Congressperson - but you'd like to see them sign on - you can do some "pick and shovel" work yourself. Go to this site and you'll learn how to find out the email address of your Congressperson and how you can email your representative. If your rep is one of the people who co-signed, please email them to say thank you. If your rep hasn't yet signed - email him or her and tell him why it's so important to get their support. It's so crucial that our members of Congress hear from us. They listen to their constituents, so please send them a note!
And if you're not from Massachusetts, you can use that link to contact your member of Congress too.
Together, we can make a difference.
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