In 2016, I was fortunate to attend the Arthritis Foundation Advocacy Summit in Washington D.C. alongside some seasoned advocacy veterans from Denver. I had never met with my legislators or shared my story before, so it was a new experience. It was easy to “catch the bug” for advocacy being surrounded by so many other fellow arthritis patient advocates who want to make a difference for all of us. Raising awareness and fundraising for arthritis has been an integral part of my life for the past several years, but advocacy has become an even greater passion. This year, I achieved the Platinum Ambassador Award and will attend the Arthritis Foundation’s Platinum Ambassador Assembly this March 12-13, 2018.
A few weeks later, we headed to Washington D.C. for the Arthritis Advocacy Summit. We had a large delegation from Colorado with us this year, with some wonderful families and children/teens with JA who shared their stories. We were fortunate to have a meeting with Senator Michael Bennet and his legislative health aide. He carefully listened to each person as they shared their experiences of living with arthritis and was especially interested in hearing from the younger advocates. We ended our day with another in-person meeting with Congressman Mike Coffman, who told us in Denver that he’d make sure he got to meet with us when we were in D.C.
Advocating at the federal level can seem intimidating, but it’s important to remember that our government officials work for us. We voted them into office, so it’s important that they hear our stories and understand the challenges we face on a daily basis. It’s important to put a face to an issue when they are working on legislation that affects us in our state.
After advocating in D.C., I returned home to continue advocating the next day to our state legislators in Denver. Our local Arthritis Foundation office is part of a group called the Chronic Care Collaborative, and we spent the day advocating alongside other patient advocates representing their causes. This experience was quite different than D.C. – it’s more “meetings in the hallway” and spontaneous. You need to know exactly what you’re “ask” is and how to share your story in a very brief amount of time. We were advocating for a step therapy bill, which was an issue that has significantly impacted my health, so I had a story to tell. Both my state senator and state representative were on the committees that would be holding the hearings on the step therapy bill, so it was certainly an added bonus to get their attention.
We were able to get a quick meeting in the hallway with my state senator, who was eager to understand more about step therapy. Knowing that he was the chairman of the committee, I wanted to make sure he heard how important it was to me that this bill move forward. It was gratifying to feel that my local legislator was intrigued to hear my personal story. It truly felt like my story mattered, especially with the questions he asked after listening to my quick personal story. This quick meeting led to me testifying before a state senate committee to share my story as it related to step therapy. It passed unanimously in this committee and moved forward to a house committee, where I again was able to testify about my story and step therapy. The bill moved onto the Governor’s desk eventually and was signed into law in June.
In August, I requested a meeting again with Congressman Coffman to discuss the national step therapy bill and to ask him to co-sponsor it. In our two prior meetings this year, we shared information about step therapy with him and he was interested in learning more to understand the issue. He made time to meet with us on a Saturday morning in September to further discuss the issue. We discussed the law that passed in Colorado and I shared my story regarding step therapy. The meeting was very positive and seemed as though we might get our wish. As luck would have it, one of our local leadership board members, who is a rheumatologist, attended a dinner meeting that Congressman Coffman was also in attendance. He discussed the meeting we had that morning with him regarding the step therapy bill and asked our rheumatologist board member many more questions. This team effort to advocate for his support of the step therapy bill was a success, as a week later, Congressman Coffman added his name to the list of co-sponsors for H.R. 2077 the Restoring the Patient’s Voice Act. Once again, sharing my story helped to make a difference.
If sharing my story can create laws that help other people like me, then I will continue to do so as often as I can. My story matters. We have limits to step therapy in our state now. That’s why advocacy is so important. Share your story – it’s the best way to educate others and raise awareness about what it’s like for people living with arthritis and other chronic diseases.
This March, I will share my step therapy story once more during the Platinum Ambassador Assembly to advocate for a federal bill that will put limits on the practice. The Platinum Ambassador Assembly is a meeting to honor the 2017 Platinum Ambassadors where we will take part in in-depth and advanced advocacy training followed by a day of meetings with our legislators on Capitol Hill. I can’t wait to share my story again, and hope you will share your story too. Click here to take action on Step Therapy, encourage your members of Congress to support H.R. 2077 the Restoring the Patients Voice Act.
- Arthritis Foundation Legislative Position Statement on Step Therapy
- Ambassador Spotlight – Lori Fagan, Virginia
- Junior Ambassador Spotlight – Ethan Berkovitz, Ohio
- Ambassador Spotlight – Kerry Wong, New York