Lung Cancer Advocates on Capitol Hill: A Report on the American Lung Association's Advocacy Day

The American Lung Association (ALA) has long sent staff and volunteers to Congressional offices to advocate for actions that improve lung health for all Americans. Last year this program became part of the LUNG FORCE initiative that focuses on lung cancer. This year, for the second year in a row, lung cancer advocates from all 50 states gathered in Washington DC for two days of learning, fellowship, and doing the good work of delivering a unified message to our elected representatives.

Each state sends one Hero, a person who is a lung cancer patient, survivor, or caregiver. I was honored to represent New York. The Heroes are not sent to Capital Hill alone; professional staff from across the nation also attend, increasing the number of offices that can be visited and strengthening the policy message each team delivers to elected representatives and their staff. The heart of each presentation is the Hero’s story. Congressional offices are awash in facts and figures, and what gets attention is a compelling personal story - and we advocates can all tell deeply engaging stories.

The story is the emotional center of each visit to a Senatorial or Congressional office, but you also have to make “the ask”. Usually these visits have only one specific ask, but in this year of political turmoil and possible budget cuts, we made two asks. The first was for an increase in funding for the National Institutes of Health (NIH). The second was to ask that the elected official vote against any healthcare proposal that would lead to more Americans being uninsured, or to elimination of any of the essential health benefits that are currently protected by law.

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 participated in six meetings, and a Representative attended only one of them, although we were able to get photo ops with a couple other Representatives. Everyone we met with was friendly and professional, and it was easier than I thought it would be to tell my story and to make our asks. We received a good reception from everyone we met. Increased funding to the NIH was strongly supported, and every office I visited also supported keeping healthcare protections in place, most in full, one in part. Other advocates reported similar experiences. Even in offices where the elected officials did not support the asks, the advocates were able to make their case and were treated politely.

The one meeting where we met with an elected official was with Representative Elise Stefanik, who represents my Congressional district. She wanted all the local details of my story, was responsive to our concerns, and asked what she can do for lung cancer. We were pleased, because she’s a rising star in the party that currently controls Congress, and we hope that her positive response bodes well for future action in Washington on these issues that are so important to people with lung cancer.

We didn’t go just to work, we also had fun. The ALA treated us all very well indeed, making our travel reservations for us, putting us up in a luxurious hotel, and making sure that we had plenty of delicious food and drink. The busy two-day schedule had social time planned as well as work time. People who have directly experienced lung cancer bond to each other whenever we get a chance to meet, and there were many shared stories, hugs, and exchanges of addresses. Several people who are active in online lung cancer support groups were there, and a group of us started off the event with a meet-up in the hotel bar. Sitting around the table we had K from Hawaii, Dora from Wyoming, Candi from Nebraska, Anne from Colorado, and me from New York, all Facebook friends who in most cases had never met in person before.

Ways to get involved

Next year a different group of advocates will walk the halls of of the Congressional office buildings, as the ALA recruits new participants into this program each year. While I would love to do this again, I understand that this policy means that the number of advocates who are experienced with talking to elected officials will grow. Alumni join the Save Our Lungs Team, and continue to contact our representatives on important issues affecting our health. We potentially have extra clout when we call and email, because our elected representatives know who we are, and every year there are more of us.

If this sounds like an opportunity that would interest you, get to know the folks at the office of the American Lung Association that is nearest to you, and get involved. People who have participated in ALA and LUNG FORCE programs have the best chance of being selected to represent their states. I can promise you a great experience and the warm feeling that you just might have helped to make a difference.

Editor’s Note: We are extremely saddened to say that on June 27, 2019, Anita Figueras passed away. Anita was a valued member of the Lung Cancer community and an incredible advocater. She will be deeply missed.