On June 26, we (over 600 people, and I) descended upon Capitol Hill to show our muscles, and push for the Pancreatic Cancer Research and Education Act.
And we are doing great! We have the support of over 275 representatives, that’s almost 2/3 of the house!
But while we have tremendous support, it doesn’t guarantee that our bill will be passed. Many endeavors can have great backing, but never even make it to the floor for a vote. Argh!
And so we are taking nothing for granted, and leaving nothing to chance. We are pushing hard. We need to get this bill passed this year!!!
And to that end, Pancreatic Cancer Action Network and I have done our best to make this Act visible to the public, and hopefully, garner so much support that it can’t be ignored. So, prior to, and during our Advocacy Day this past June 26th on Capitol Hill, we had our “3 Week Challenge to Victory,” “National Call-In Day,” and did interviews (if you want to watch, or read some of these interviews, go to my June 2012 links at http://www.lisaniemiswayze.com/updates-and-events/).
Everyone always thanks me for my efforts, and I appreciate that. But I am very visible… The people I am really in awesome admiration of are the over 600 who came to Washington and those who had to stay at home, but still raised their voice in support. People whose names you’ll never know.
It takes a particular kind of spirit to do this. It’s not a glamorous disease. In fact, it can be downright depressing, and many who have gone through it, want to get as far away from this terribly sad illness as they can. It takes an extra “something” to hang in there.
I was so moved as I watched these intelligent, well-spoken, motivated, and emotional people walk into this nation’s Capitol rooms to advocate for this bill.
They brought pictures of their lost loved ones, stories of their fight, and how their loved ones deserved the chance that, unfortunately, was not there to give to them.
I met two of these people coming out of our first meeting with smiles, and bright eyes. They had gotten there early, and were already done! The verdict? The representative signed on in support!
Moving to another appointment, I sat in a room with a lovely couple from Albuquerque. The wife told the aide (who took the meeting for the Senator) about her young, military decorated brother who lost his life to pancreatic cancer, and showed pictures of him: surfing with a silly smile, when he was sick with an IV in his arm, and being laid to rest in a casket covered with an American flag. She fought through her tears to tell his story, and it was very tough to be in the room without breaking into sobs with her. Oh, my! This is my first meeting and I’m already emotionally exhausted! How I’m going to get through this day??
After the woman had finished talking, the aide kindly explained that the Senator did not want to sign on in support the bill, but would talk to the National Cancer Institute to ask why only 2 % of its annual budget is going towards pancreatic research.
As she talked, I felt my cheeks start to burn. I mean – Pancreatic cancer is the 4th leading cause of cancer deaths. Of the top 5 it is the most fatal. There is no meaningful treatment options for it, or early detection. There’s only a 6% five year survival rate. Average life expectancy after diagnosis is 3-6 months. Since my husband died these statistics still remain the SAME. And they have remained the SAME for over 40 years!!!
Don’t the statistics speak for themselves? But sure, go ask them. I’m sure you’ll make meaningful progress (I’m being sarcastic here, could you tell?).
A savvy doctor was in the room also, and he countered with such excellent information (along with startling medical info), that our issue seemed very clear. I could have kissed him! But alas… The aide could only stick to what the Senator said, but assured us she would pass along our information.
It’s a long day on the Hill, one that is curiously laborious, tedious, and yet emotional. We spend lots of time waiting in outer offices, waiting in halls, enduring epic walks to other meetings for the opportunity to sit down for a few minutes to promote and garner the important support we need for our cause. And then, more long walks (even though I brought walking shoes to change into, I got blisters on my feet that, 4 weeks later, are finally starting to fade!)
But it’s worth it when you walk into a room, like we did with CA Representative Kevin McCarthy, and he not only offers his support, but suggests he speak to Chairman Upton about getting this on to the floor for a vote! As he said simply, “It’s going to help people, right?” Dumbfounded with our good luck, we nodded. “But, please continue, I’d like to hear your stories,” he asked. And out comes the precious photos, and the grateful opportunity to share – The greatest husband in the world that died, the beautiful, admired Kindergarten teacher whose young students made a garland of photos to honor her at her grave… Ah! These people care so deeply!
And we set off for another meeting, with another group of advocates…
I met so many people who had come from all over the country, at their own expense, to advocate for this bill – people who were “in the fight” themselves, and friends and families of loved ones who were fighting, or had perished. One thing’s for sure. And I think all that were there know this to be true – It’s up to us to stop the destructive path of this disease. And I saw in their eyes, the same thing that I feel – that I will continue this fight for my husband. It is my love that I put on the line here for him. And I put that love on the line for all the others in this fight, too, because I know the depth of their feelings for their loved one. And from first-hand experience, I know what a precious gift life is for someone who wants to live.
In September, a small group of us (doctors, researchers, staff from Pancreatic Cancer action Network, and me) are going back to Capitol Hill for a final push. Wish us luck. Keep calling your representatives. We’re going to push this one over the top.