Friday, March 14, 2008

Rattling Cages for Pancreatic Cancer

I just returned from a trip to Washington, D.C., where I joined 220 other citizen lobbyists to hit up Congress for research funding for Pancreatic Cancer. It was a powerful couple of days.

The first day was spent in training. I thought I knew a lot about Pancreatic Cancer - it's fast, it's deadly, it's hard to detect - but seeing the actual numbers and learning about the funding inequities was really eye opening.

Pancreatic Cancer is the fourth leading cause of cancer deaths in the United States (after lung, breast, and colon) and yet it receives the least amount of funding per patient of all major cancers. On the flip side, it has the highest mortality rate of all cancers, with only 5% surviving 5 years - 75% of patients diagnosed with Pancreatic Cancer die within the first year. No real progress has been made in treating Pancreatic Cancer in 30 years.

The second day was spent meeting with my Representatives and Senators on Capitol Hill. My group was lucky to secure meetings with our actual representatives as well as their very well-informed staff. I have to admit I was expecting a "Here's your hat, what's your hurry?" type of response, but we were met with smart, probing questions and some very positive feedback. A nice surprise. What we were asking for - $170 million in funding for Pancreatic Cancer plus an increase of 9.5% for the NCI - is a lot of money. But considering funding levels for this kind of cancer are where breast cancer funding levels were in 1950, it's time to take some action. We have a lot of catching up to do.

The real treat, if I can even call it that, was spending time with other people who have been affected by Pancreatic Cancer. It was heartbreaking to hear the stories of people who have (like me) lost someone they loved, but inspiring to look into the fighting eyes of survivors. It was like we all spoke the same language, and when someone said "I understand," I knew they meant it.

So hats off to the Pancreatic Cancer Action Network for putting on an Advocacy Day that may make a huge difference in thousands of lives. And hats off to Washington State's politicians - I have a new appreciation for the work they're doing.

1 comment:

Jeanne said...

Jennifer--great post! I'll link to it from my blog, if I may.

Jeanne
www.assertivepatient.com