Participants Share Perspectives on PHPN Advocacy Day 2011
I had a purpose. I had a story to tell.
~ Sue Huseman, RN
In late September, more than 70 PH Professional Network members from 29 states visited over 60 Senate offices to educate Members of Congress about the urgent need for PH awareness, early diagnosis and treatment, and to request cosponsorship of the Tom Lantos PH Research and Education Act of 2011. In this article, Fran Rogers, MSN, CRNP, and Sue Huseman, RN, reflect on their Advocacy Day experience.
Fran Rogers, MSN, CRNP
Attending Advocacy Day 2011 was a unique and rewarding experience. It isn’t every day that we can take our PH knowledge as healthcare professionals directly to our lawmakers! We share it every day with our patients and their families, but for me, spreading that knowledge on Capitol Hill was “taking the next step.”
The informative prep session before leaving for “The Hill” gave us the tools we needed to make every minute count as we navigated from the House to the Senate. One of the highlights of Advocacy Day for me was hearing from Congresswoman Lois Capps (D-CA), a registered nurse, who sponsored the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 with Congressman Kevin Brady (R-TX), an early and passionate supporter. She took time out of her busy schedule to thank us for coming to help spread the word about how this bill can save lives by making more research possible sooner and increasing public and professional awareness of PH. It was obvious that the passage of this bill is as important to her as it is to us!
Armed with Congresswoman Capps’ inspiration and our determination, we set out to meet with our legislators. Whether we met with them or their legislative assistants, we were able to effectively explain why co-sponsorship and eventual passage of this bill is so important to their constituents — PH patients, families, caregivers and healthcare providers. At a time when our elected officials are faced with monumental issues, I think our presence and message on Capitol Hill did not go unnoticed or unheard. We will go back again and again, if need be.
If you haven’t attended Advocacy Day during a PHPN Symposium, please consider it in 2013. There truly is strength in numbers. It will offer you another way to “care” for our PH patients — one you won’t soon forget!
Sue Huseman, RN
Have you ever wanted to do something important to support a cause you are passionate about? Do you have a great story about a PH patient who benefited from your intervention? PHA’s PH Professional Network Advocacy Day was a way for me to share my stories. My first year (2009) I really had no idea what to expect but just the experience of walking into the halls of Capital Hill was pretty awesome. To actually speak to people in the offices about PH was even more empowering. I was a little intimidated at first, but PHA staff explained it all before we got started. As the PH stories and disease explanations started flowing, conversation was easy.
I had a purpose. We were asking Members of Congress to co-sponsor the Tom Lantos PH Research and Education Act, a much-needed bill to support PH education and funding for research. It is important to our community and on Advocacy Day I actively chose to help move it along. You have to agree that’s pretty awesome!
In September 2011, when I attended my second Advocacy Day, I knew what to expect! I was no longer intimidated by being on Capitol Hill. I had a story to tell — sometimes more than one — and I needed my senators’ support. I was also honored to have a patient in our group this time who had a personal story to share.
If you have passion about PH and are willing to share your knowledge, experience and stories, then attending Advocacy Day is for you. Take the opportunity to walk the halls of Congress and speak to the people you help to elect. You have a duty as a responsible, concerned professional who represents a population of individuals living with a devastating disease. Speak out. I encourage you to take some action. Hope to see you next time, because this is an event I don’t plan to miss.