Tuesday rolled around, and I was ready for Capitol Hill Day. The day started early since the buses were leaving at 7:45 to head to the Hill. Team Virginia was off to our first meeting right away. Basically the plan was for each person to have three meetings – both of your state Senators and then your local Congressman.
I know, typical tourist picture. Even though I live here.
We started by meeting with Senator Webb’s counsel who was very nice and listened to what we had to say. Since there were 8 people from Virginia, there were plenty of people to talk and share our story – if anything, the hard part was all feeling as though we’d said what we wanted.
All of these assistants hear about health related issues all of the time. Our goal was to tell what we go through on a daily basis or how it impacts our life and why it is a serious disease, not just itchy skin. We shared stories of people who weren’t allowed into pools by lifeguards because the lifeguard couldn’t understand that the disease wasn’t contagious. We heard stories of bullying, of tough decisions about choosing to have children. I honestly had no idea what so many people went through, especially those who were diagnosed at a young age. Ignorance is not bliss, and people who choose not to hear what others are going through and empathize can be cruel. The good news is many people have found treatments that work, but often at high costs (both in dollars and side effects). With continued research, let’s hope for better options.
Virginia group! They were such great people and made it a fun day. Hope to see them all the walk in September!
We then headed over to meet with Senator Warner’s Legislative Assistant (LA).
At this point, you are probably asking – what were you requesting?
1. Co-sponsor H.R. 2033/S. 1107, the Psoriasis and Psoriatic Arthritis Cure and Care Act (PPARCCA) which was recently introduced. This bill authorizes psoriasis data collection at the CDC and voices Congressional support for public-private sector efforts to advance psoriasis research and find a cure.
2. Enlist the support of a request for $1.5 million to allow CDC to implement the second phase of its psoriasis data collection efforts, initially funded and begun in FY 2010.
Not too much to ask, right? Basically, when you hear statistics on many diseases, they are often quoted by the CDC. Right now, the CDC doesn’t track psoriasis so it is harder to keep meaningful records which hinders research.
Most of the Virginia group after our meeting with Senator Warner
After our second meeting, we went to grab snacks in the cafeteria in Russell Senate building and talk about our plan from there. One of our group members was really not feeling well – her psoriatic arthritis was acting up and just walking around for the morning was making her feel terrible. We told her there were plenty of people to cover the meetings and she should go home and feel better. She was disappointed to leave, but realized we would make sure her story was heard.
As a result, I jumped in for an extra meeting, and Robert and I headed off to lunch before meeting Representative Connolly’s LA to talk about how serious the disease was. We pointed out that we were a team member short because of it’s impact – further proof to anyone who thought it just might be itchy skin.
After that, Robert was going to Congressman Kent (in Pennsylvania) along with a wonderful mom, her two kids (Carly and Katelyn), and her sister in law. These little girls have both had psoriasis since they were young (it was caused by strep throat and misdiagnosed at first).
They got to get a picture at the Congressman's desk. I was kinda jealous...
After signs of psoriatic arthritis started, one had to go on treatments that caused her hair to fall out, and asked her mom “When will I be a princess again?” Can you imagine the pain that must cause a child, not just physically but emotionally? Sure, there are treatments, but the long-term effects are often unknown, and the short-term effects are so rough. The good news is that the treatments are working very well and both are cleared now!
Carly and Katelyn were awesome. These girls are stronger than most adults - and are lucky to have such great family that support them.
I then met up with my local team so that we could meet with Congressman Moran’s LA for our last meeting of the day. Overall, I think we shared a lot about the disease and what it can really mean, which was the largest goal. Please, consider sending a note to your Congressman telling why they need to help find a cure for psoriasis by going here.
We then took the buses back to the hotel and had a wrap-up session where we shared the best and worst stories of the day. I must say – as a 25 year old, it’s tough to agree to take two days off of work to sit in conferences and long days. Not exactly your ideal vacation. But these last few days were SO WORTH IT, which should tell you just how much it meant to me. Great conference, NPF!
Time to tell about our day and the adventures while visiting the Hill
It was finally time to say goodbye, and it was weird to leave people that I’d only known for a few days but felt I knew so well. I hope some of you have now decided to start reading the blog, and please know I will continue to share your stories and hope that together, we can make a difference.