Fighting for Lung Cancer Patients: My experience at LUNG FORCE Advocacy Day

Lysa B. is a LUNG FORCE hero.

I was diagnosed with stage IV lung cancer on September 27, 2011. I will never forget that day and the doctor's exact words: "You have lung cancer that has already spread to your spine." I was 40 years old, very active and fit, and had no known risk factors. I was learning, like thousands of others, that you only need lungs to get lung cancer.

After the initial shock and sadness of being diagnosed wore off I felt a strong urge to get involved with raising awareness. My mom found an upcoming LUNG FORCE Walk for the American Lung Association (ALA) in Las Vegas. We formed Lysa's Army and I participated in my first event. I was proud to see the support of my community coming together and I was so happy to be a part of it. The Director asked me to say a few words and our partnership has become stronger ever since. That was over 3 years ago and I now consider the staff part of my family.

When I learned the statistics I was shocked and couldn't understand why more people weren't talking about lung cancer, why research dollars were so minute, and why more people weren't angry about it. A few staggering facts for you:

• Over 224,000 people are diagnosed each year in the US alone ( 1.8 million worldwide)
• It is the #1 cancer killer in the world
• It kills more than breast, colon and prostate cancer combined
• The majority are diagnosed at stage 4 and die within the first year
• A mere $2300 per death is spent on lung cancer research compared to $17k for breast cancer

I believe everything happens for a reason and I knew I needed to help in any way I could to change this dismal prognosis. I have participated in 3 LUNG FORCE Walks and 3 Scale the Strat climbs to help raise funds locally but I wanted to do more. Two years ago I did my first Rally on the Hill where 200 organizations met with members of Congress to urge them to support increased funding for the National Institutes of Health (NIH). Funding had been stagnant for so long that we were actually falling behind due to inflation. This is where I met Erika Sward, Assistant Vice President for National Advocacy with ALA. She has allowed me to share my story and advocate for more funding several times over the last few years and I am now proud to be her friend, too.

The NIH, which includes the National Cancer Institute, got $32.5 billion last year due to the efforts of so many people sharing their voice. This year ALA created the first LUNG FORCE Advocacy Day and took a survivor or caregiver from every state to share our stories with our elected representatives. We rallied together and all wore the same color to show our unity. It was a beautiful sea of turquoise on Capitol Hill! I was paired up with Anne DiGiulio, manager of Lung Health Policy, and she was a wonderful guide and coordinator. Every member of ALA I have encountered is completely committed to lung health and making policies to improve outcomes. I feel extremely blessed to be a part of this movement.

There was a wonderful reception the night before and I got to meet the Director of the NIH Dr. Francis Collins, hang out with my fellow survivors, and even meet Patti LaBelle. I was very happy I was able to take my 15-year-old daughter with me to help advocate and see how this process works. Even though it was a very long day, we had a great time and managed to get some sightseeing in too. We met with 3 representatives from Nevada including some of their staff. This year we asked for continued robust funding for $34.5 billion. All of my members seemed very supportive and agreed more funding for the NIH is crucial.

I want you to know progress is being made. Funding is increasing and new discoveries are being made constantly. We still have so much ground to cover, but I'm confident we will continue to make progress with the help of the dedicated staff of the American Lung Association and so many amazing advocates. I have become very close with many survivors and my heart breaks each time one of them runs out of time.

We fight as a family, we fight for ourselves, and we will continue to fight for those that no longer can.