Thursday, September 11, 2008

Capitol Hill

When I first started working for the National Coalition for Cancer Survivorship, I was not exactly familiar with the term "grassroots advocacy." The word advocacy just seemed so exclusive and intimidating. I thought the only way I could be a part of the movement was to join some club or group, but little did I know I had been an advocate since my diagnosis over 3 years ago.

After I was diagnosed with cancer at the age of 22, it was my family and my sisters that taught me to speak up and ask my doctor questions about my treatments, side effects, and medications. They taught me to be proactive, involved, and educated. Looking back over those 3 years, I now realize that I was advocating for myself.

Advocacy, however, can take on multiple levels and forms. Sending letters and writing to your Congressman is advocacy for others at the federal level. For the 23 of you from Maryland that sent letters, you are now advocates - thank you!!!

Even though most of you wrote the letters on behalf of me and my fight, it’s really for the 200,000 people diagnosed with Lung Cancer this year and every year. Of those 200,000 people this year alone, about 15% or 30,000 of them will have never smoked. They never brought it upon themselves. Unfortunately, for some they never were even given a chance as most lung cancer diagnosis are late stage. Unless we do something, unless we change the perception about lung cancer, unless we rally to increase funding, and unless we advocate at the federal level, the statistics will not change.

Lung cancer is given the nickname the “invisible disease” or the “silent killer” because as Meghan said in her previous post, “There are no survivors to hold walks & events, only the loved ones left behind after cancer rips their world apart.” I went into Senator Mikulski’s office with a few other advocates and the Lung Cancer Alliance Staff (we only met with a Health staffer and not Mikulski herself). I proudly wore a bright yellow t-shirt that said “LUNG CANCER SUCKS” and had my bright yellow folder with all of your letters close to my side. (They took pictures so I’ll send it when it comes through).

I told Mona, the health staffer, my story and said, “I’m here. I’m alive and I’m living with lung cancer. I told her I was 26 and engaged. I told her I wanted to get married, have a family, and live until I’m 74, but that Senator Mikulski needs to approve the bill. She needs to approve the bill, appropriate the funding for lung cancer, and champion the cause to all of the other Senators. As Meghan pointed out in her letter, Senator Mikulski has on her website, “I came to Congress to change and save lives.” Well lung cancer is the leading cause of cancer deaths in the US, 1 in every 3 cancer deaths, so let’s hold her to her word.

I’m not exactly sure how a bill becomes a law, but you can brush up on how the legislative process works via the old Schoolhouse Rock video here:

Thank you to those 23 people from Maryland that sent the letters. The staffer was very eager to get her hands on the yellow folder which I scribed in big black marker “Lung Cancer Bill.” If you are not from Maryland and want to send one to your representative, please visit this link. It really takes 2 seconds.

Legislation sometimes can take years to get passed. However, today was a start. Even though we only spent 20 minutes with the staffer, I’m hopeful my story, my bright yellow t-shirt, and the heartfelt letters will leave an unmistakable mark etched in her memory. Today, myself and the 3 other lung cancer advocates took a small step for man…..we just need Senator Barbara Mikulski and all our other representatives to take a giant leap for mankind. I leave you with this quote:

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”
- Margaret Mead


hughesd2000 said...

Very nicely said and I have no doubt that you will be remembered in that office today. Anyone who hears your story is affected by it and I hope will stand up and help in any way they can. With that said, I sent a letter to both our senators here in little Rhody and got a pretty good letter in return from Senator Jack Reed who is on the HELP (Health...and Pensions) committee in the senate and was well versed on the Lung Cancer Mortality Act/Bill and seemed interested in seeing it progress. I will forward the letter to you by email so you can see what he had to say. It was probably a form letter, but I appreciated the response back. Anyway like you said hopefully a small group of people can help make this happen.


Anonymous said...

Danny and Meg, I love reading your blogs and now read them every day. There was a time when I couldn't because it made me cry so much. Now I can, and I love to read the comments your friends make as well. You are both so loved and supported. You both write so eloquently. it constantly amazes me what great writers you both are. I can't speak for Meghan, but Dan, you have come sooo very far from the highschool writings I used to type for you. Who taught u to be such a good writer and speaker? Whoever it was, they did a GREAT job and u might think about thanking those former or current .teachers. I so often think of when u were a small toddler, then marvel at the super young man you have become, and I am ever so proud to be YOUR MOM

Anonymous said...

I'm just smiling thinking of you in there - so glad you were able to get some face time - I KNOW it will make a difference!

Jen and Ishu said...

Dear Dan (and Meg),
I have been deeply moved reading your blog posts. The two of you are so positive and determined you are an inspiration to so many. Thanks to your link, I emailed Senators Casey and Spector telling them Dan's story. Hopefully they will be as moved as me! I will keep you in my prayers Dan. Ishu and I think of you often and wish you the best.
Jen Martin (Singh)