When I was diagnosed with RA in 2012, I had no idea that it would lead me to Capitol Hill. I only knew that I had been so sick and so overwhelmed, and I was relieved to finally have an explanation for how I was feeling.
I was diagnosed first with Lupus, then rheumatoid arthritis and fibromyalgia. My sister had been diagnosed with RA about six months earlier, so for us, RA truly was a family affair, and I already knew a bit about the disease. After my diagnosis, I had a lot of doctor appointments. I began medication and had my first Vectra test to measure my disease activity. It was through my doctor that I got connected with Crescendo and was invited to attend the company’s first-ever Patient Ambassador meeting. This is where I first found my voice as a patient advocate and learned to embrace my RA by empowering myself.
At our first meeting, I connected with other Vectra patients from across the country, all of us united in our mission to pay it forward and share our stories, advice, and experiences with others. It was truly a powerful experience. And, it was the moment in time when I first learned that I can make a difference, partly as an advocate for others. The people I met were advocating in so many ways: from support groups to community talks, to local media, and even government. I was intrigued and inspired by them to find my niche in the advocacy world.
My new role as a policy advocate began with our local Arthritis Foundation and its Arthritis Support Network. Up to that point, I saw my representatives just as people on TV. I didn’t realize I could actually engage with them. I didn’t realize that I could actually affect legislation. I soon had the epiphany that our duty as patients is to educate our representatives on our health issues if we want change. Without hearing directly from us and understanding our needs, how can they truly make informed decisions?
My path to Washington began when I attended the National Gathering“G9” conference last May. There I met lots of people who talked about having a voice, being more active and helping others. At the end, the question was posed: What are you going to do to give to someone else? I felt the calling.
From there, I went to the Arthritis Foundation website to apply to be an ambassador. After filling out the application, there is an interview, and then we undergo training. Another woman in my local office was already trained as an ambassador leader, so we were able to co-chair our local group and go to Washington together.
Our big day was March 6. That’s when we arrived in Washington for the Advocacy Summit, an annual event by the Arthritis Foundation that allows Advocates to come together and learn how to advocate and build relationships with members of Congress and their staff. More than 400 Arthritis Foundation Advocates were there from across the nation. On our first day together we bonded and learned terminology and how proposed legislation would affect arthritis patients. We also practiced our story to become effective communicators. It was an important time for us to be making our voices heard, considering the legislation that was being discussed – the repeal and replacement of the Affordable Care Act, also called Obamacare.
The next day, we went to the Hill with advocates from our home areas. One of the highlights was when our group met our own Texas Senator Ted Cruz personally and shared with him our concerns. I also was part of a group that met with Senator John Cornyn’s healthcare advisor and staff, and with Will Hurd, from my home district. In each case, we encouraged our legislator to become a member of the Arthritis Caucus(or thanked them, if they already were members!) and shared with them our personal stories.
We also presented some compelling facts about how arthritis impacts our military to build our case for more research funding: did you know that arthritis (RA and osteoarthritis combined) is the second-leading reason for discharge in the Army, and 1 in 3 veterans suffers from arthritis? We were equipped with other important facts related to topics such as annual out-of-pocket costs, pre-existing conditions and more. You can see a bit about the Summit here.
Our group who met Senator Cruz was fairly large and included a number of children diagnosed with Juvenile RA. When it came time to share our stories, we let the children speak. Many of the kids were very young, but some had even helped bills pass by testifying in Congress! Others were in college, and as Joe mentioned in an earlier blog, have special concerns. Several were on their way to law school so that they could advocate for others. Their stories were so inspiring and impactful. Their stories really hit my heart.
The connections you make attending summits and other events are life-changing. Everybody there understands everybody. We all get it. We’ve been there, we’ve felt that pain, we understand when the outside world sometimes doesn’t.
In recent months, I’ve embraced social media to connect with my Congressman, representatives in my area and other patients like me. It’s been a powerful channel to have my voice heard. And, I’d love to connect with you too. Together, we can make a difference.