Nurse Simani Goes to Washington
March 27, 2009
Hello Nursing Colleagues.
Today is an exciting day for me as I depart for Washington, DC. Although it is spring break season, this trip is not focused on fun, but more on a mission. A little move than 3 years ago, my 38-year-old sister was diagnosed with pancreatic cancer, needless to say it was a devastating blow to our entire family. By the grace of God and a good surgeon, she is living a fulfilling life and together we pour much of our free time into supporting the national organization dedicated to advancing research, supporting patients and creating hope - The Pancreatic Cancer Action Network.
My sister and I will be traveling with four others from the Madison Wisconsin affiliate of the Pancreatic Cancer Action Network, and joining thousands of other advocates, survivors and affected family members from across the country to raise our voices and educate Congress about the urgent need for funding.
Pancreatic cancer is the most deadly cancer with the least funding from the National Cancer Institute (NCI). Currently, the NCI spends less than 2 percent of their budget on pancreatic cancer research. In addition, it is estimated that fewer than 150 researchers nationwide focus on this type cancer. This shrinking pipeline of pancreatic cancer funding also discourages promising young investigators and sends them into other research venues.
So please check back from now through Wednesda, as I add daily comments about our experience, the process, what it means to be a nurse lobbying for increased funding in these econoomic times, and the personal aspects of the relationship my sister and I have and what this trip means to us. We will be exercising the most basic of our rights, active participation in our democracy. I hope you join us on this journey.
Julie Olson Simani, MS, RN, CBE, CQIA
PS: The room was filled with energy and some sadness as we saw more than 200 participants and only a handful with survivor nametags. The mortality rate for pancreatic cancer is so high, most people die within 4 months of diagnosis. It seems the survivors find each other and have the invisible bond that is created with surviving this type of cancer. Their numbers are few, but together with family and friends, their voices are many.
Tomorrow we begin 2 full days of training, receive updates on the research and new legislation that promoses new hope if passed.
Good night for now.
Julie
PHOTO CAPTIONS: Top: Tammy Andries and Julie Simani, MS, RN, CBE, CQIA, land in Washington, DC. Bottom: Madison affiliates of the Wisconsin affiliate of the Pancreatic Cancer Action Network travling to DC include Barb Karlin, (left) Amy Olson, Korey Kopp, Kylee Carolfi Malik, Julie Simani, MS, RN, CBE, CQIA, and Tammy Andries. photos courtesy Julie Simani
March 28, 2009
Today was filled with such a mix of emotions, both sadness and hope. The large room where we gathered was filled with family members who have lost someone to this disease, and an obviously small number of survivors. The survivors, identifiable by a purple ribbon with the word survivor on it seemed to find each other and share their journey, making comparisons and acknowledging the similarities. Then there were the silent family members who have had a loved one die from it. The Pancreatic Cancer Action Network gives them an outlet for their pain, anger and passion. It was incredibly powerful to think how many have died from this disease known as the "silent killer." Pancreatic cancer is currently where breast cancer was in the 1930s and there is a lot of ground to cover to improve the statistics.
Each year, 38,000 Americans are diagnosed with pancreatic cancer and 34,000 will die within the same year. It's a difficult disease to diagnosis for several reasons, lack of research dollars have slowed scientific progress in this cancer, no early detection or screening methods are available and typically when it is diagnosed, it has already spread to other organs.
Tomorrow we have advocacy training before we head for the Hill on Tuesday. Pancreatic cancer is the most underfunded, under-recognized and the least studied of all major cancer killers securing less than 2 percent of the National Cancer Institute's annual research budget. HR 745, the Pancreatic Cancer Research & Education Act has been introduced by Rep. Eshoo and Rep. Brown-Waite, and we will hopefully be securing more co-sponsorships on Tuesday. There will be opportunity for everyone to supply information to their members of Congress during the spring recess April 6-17. If you are interested in learning how you can help this cause, please sign on to http://www.pancan.org/Public/take.html to find 
your local area coordinator who can provide guidance. A simple visit to a congressman's home office can make a huge impact. Please log on to find out more.
Julie Simani MS, RN
PHOTO CAPTIONS: Top: Tammy Andries, (left) a 3-year survivor of pancreatic cancer, and her sister Julie Simani, MS, RN, CBE, CQIA, meet with Julie Fleshman, president and CEO of the Pancreatic Cancer Action Network. Bottom: Friends, family members and advocates sign the wall of honor and memory created by the Pancreatic Cancer Action Network. photos courtesy Julie Simani