Know Your Pancreas & Live to Tell About It
That was the title of the ad prominently displayed on the back cover of the Congress Daily AM March 31st when we "stormed the hill." What an amazing day we had. The six of us, along with two other Wisconsinites, met with Sens. Kohl and Feingold health staffers; and Reps. Tammy Baldwin, Ron Kind, Dave Obey and James Sensenbrenner health staffers. Our goal was to share a few of the statistics, our personal stories and then ask them to sponsor the Pancreatic Cancer Research and Education Act, H.R. 745.
This bipartisan legislation would create a pancreatic cancer research initiative to provide strategic direction and accountabilit
y, establish a cancer research incubator pilot project, expand the Centers of Excellence in pancreatic cancer, and promote physician and public awareness. We received favorable responses from our visits and are hopeful we secured at least three additional co-sponsors for this legislation from our state. Of course, we won't be celebrating until we've confirmed their co-sponsorship.
One of the realities of Washington, DC, and state government as well, is that on a daily basis, advocacy groups and professional lobbyists are coming in the offices, one right after another. Especially during budget deliberations. We often met other groups as we entered the offices, and there were more groups after us.
As you can imagine, and I can attest from working in a senator's office, there is a steady stream of advocates coming in and asking for things ... money, sponsorships, internships, letters of recommendations, and on and on. The more sophisticated advocates come into these meetings knowing the congressman's voting records, knowing historical stances, and then using that information to craft their persuasive argument. Moreover, it is useful to let your elected official know if there is more to your cause than just an empty hand in front of them waiting for money.
Our group was fortunate in that the Pancreatic Cancer Action Network has a comprehensive plan for paving the path to a cure. The organization does not only request public funding, but facilitates private fundraising, provides direct patient support through the Patient and Liaison Services program, advocates on behalf of research funding that facilitates advances to other cancers, and educates healthcare providers and the general public. It's a multipronged approach that acknowledges organizational responsibility in addition to federal advocacy. It is a responsible funding model.
I love the vibe of DC. The city pulses with energy and power, and I am always awed by the gravity of what happens there. I think we all felt some sense of accomplishment. A sense that this is what the founding fathers had in mind, a government accessible to the people and a population who is willing to be engaged. So, although I'm talking through my rose-colored glasses, and I know the bottom line is often money, we can feel good we did a small part to advocate on behalf of the first ever pancreatic cancer specific legislation in our nation's history.
So, thanks for reading, and for anyone out there suffering with this disease, know there is hope. Although you weren't at the Capitol with us, your voice was heard.
In health,
Julie
PHOTO CAPTIONS: Top: Julie Simani, MS, RN, CBE, CQIA, (right) stands with her sister, Tammy Andries, on the steps of the Capitol Building. Bottom: Kylee Carolfi Malik, (left) Amy Olson, Simani, Andries, Barb Karlen and Korey Kopp stand with Rep. Tammy Baldwin (D-WI),