Friends and Family,
A month ago, we had the fourth annual Lung Love Run/Walk in Portland. Our group did us proud on this beautiful day, and we were one of the top fund-raising teams. For all of you who donated to help lobby for lung cancer research, thank you! This year’s event raised $50,000, the most ever! Here’s this year’s amazing group, Team Live Lung and Prosper:
Coincidentally, the funds raised went to almost immediate use when we had the National Advocacy Summit a couple weeks ago. 120 survivors, caregivers, and health care professionals “stormed the hill” to lobby Congress. Our friends Dawn and Greg were with us, representing the State of Washington.
Before we got started, Rep. Rick Nolan from Minnesota, who has been a co-chair of the Lung Cancer Caucus for many years, kicked off the day of lobbying with a sobering thought. “If you don’t show up in Washington, they think one of two things. One: You don’t exist. Far worse is number two: They know you exist, but think you don’t care.”
Yowza. This is why we need to keep showing up in Washington. They have to know how critical this is.
One of my favorite parts was meeting with the congresswoman from our district, Rep. Suzanne Bonamici. This is the third time I have lobbied in DC (second time for Genevieve), and each time both she and her health care policy staff person have met with us. Each time she has been gracious and welcoming, asking if there is anything else that she can do. You can understand why she is more engaged than most: Her mother, at almost ninety years old, and is a lung cancer survivor. But there’s more. Last fall, her stepfather was diagnosed with lung cancer, and died just months later. You can read more about her story HERE.
On our last trip, I gave her one of my books to give to her mother. This time, she thanked me for the book, and told me that her mother is reading it. This time I asked Rep. Bonamici if she would consider a leadership role in the Lung Cancer Caucus, since both co-chairs are resigning after this year. Just a couple of minutes after asking her, Laurie Ambrose-Felton, the Lung Cancer Alliance CEO and President, crashed our meeting and asked her the same thing!
Other than Rep. Bonamici, we met with staff with health care portfolios for our Oregon senators and congressmen/women. You may be surprised to learn that Washington is being run not just by the elder statesmen/women that we elect, but mostly by energetic twenty-somethings that do all the research for them. It’s a little scary, until you see how smart and committed they are. Some wouldn’t let us take their pictures because “I’m not the face of this office,” but all were extraordinarily receptive and compassionate. Here are the ones we could snap:
While having direct impact on our national government is heady stuff, there were also a few things I wasn’t thrilled about. First, we weren’t asking for enough! Asking for $6 million is NOTHING in the national budget! That is less than two pennies for every American, and yet 160,000 people a year die of lung cancer! Twice as many women die from lung cancer as breast cancer. Lung cancer kills more people than the next three leading cancers COMBINED. People are up in arms about the Opiate Epidemic, yet two and a half times as many people die every year from lung cancer. Why is lung cancer not considered an epidemic? Why are we asking so little, when the need is so great?
I’m also not happy that LCA doesn’t ask survivors what LCA’s agenda should be. While they claim to represent survivors, they don’t ask us what we think they should be doing. The short answer: MORE.
Finally, it’s not easy to make this trip for many people, and not just those with health challenges. LCA covered half of my flight, none of Genevieve’s, and only two of the three nights at the hotel. Most survivors have extraordinary health care expenses, and almost all have had to curtail work or stop working all together. LCA is asking people with financial hardships to foot their own bill. It’s no wonder the Western US was drastically underrepresented compared to the states within driving distance.
While I strongly believe in the process of getting involved with our national leaders, I’ll have to think a bit longer about whether I want to continue working with this group that is having far less impact than I think they should have.
The next Summit will be next March, right after a new Congress is sworn in. I’ll keep you posted about whether I'll be attending. If you have any thoughts about this, please share them with me.