Tuesday, October 1, 2019
As someone who has lived with AS for over half my life, diagnosed over a decade after my symptoms began; advocating for legislation to shorten diagnostic delays, improve access to treatment, and increase funding for research and drug development is close to my heart. When opportunities to advocate on behalf of the spondyloarthritis community come up, I am honored to speak out about the issues that affect the community. That is why I recently attended the American College of Rheumatology (ACR) Advocates for Arthritis summit as someone living with Ankylosing Spondylitis.
The American College of Rheumatology (ACR) is the association of medical professionals who research or treat over 100 forms of inflammatory arthritis and rheumatic diseases like axial spondyloarthritis, psoriatic spondyloarthritis, rheumatoid arthritis, and juvenile arthritis. Advocacy summits like the one organized by the ACR generally focus on a few current priorities having the highest impact on the community. This was not my first time lobbying on Capitol Hill, but it was my first time doing so with the ACR.
On Tuesday, September 10th, over 100 rheumatology advocates from around the country (rheumatologists, rheumatology fellows, and patients) met with members of Congress throughout the day. I was in a group of about 10 people from California, and between two and ten of us were in each meeting with CA representatives in their offices. I was even able to meet with my own Congresswoman, Doris Matsui, with whom I’ve had a relationship for several years related to healthcare policy.
Capitol Hill advocacy days are exhausting, stressful, and demanding. The Senate and House of Representatives office buildings are several blocks from each other with security at each entry. Elevators are always full, so in addition to traveling between buildings and going through security it can take a long time to get from one office to another for meetings that are sometimes scheduled back to back. Meetings with members of Congress or their legislative staffers often last only 10-15 minutes, and sometimes an urgent matter can cut the meeting short. Lobbying requires flexibility and a willingness to constantly adapt to the members’ schedules. For me, the fast pace is as exciting as it is exhausting; and I rely on adrenaline, extra pain- and fatigue-relief methods, caffeine, and my handy wheelchair to get me through the day.
For me, sacrificing my health to do these events is worth meeting face to face with the people making policy decisions that impact my life almost daily.
During meetings, introductions are made, issues are presented, questions are asked, and notes are taken. The most important part of these meetings is the chance to share personal stories to show how each topic affects real lives. Our priorities during this particular advocacy day were 1) pushing for step therapy reform and 2) working on several pieces of legislation that would increase the number of rheumatologists and pediatric rheumatologists in the USA. I was able to share specific examples of how step therapy, or ‘fail first,’ policies have harmed me as a patient. I also talked about the long wait times I’ve experienced just to have a first appointment with a rheumatologist, and how that impacts my health. It was incredible to see the shock on Congressmembers’ faces when I shared these stories. One of the most gratifying feelings as an advocate is to see the power of my own story.
As a patient, having the opportunity to directly impact policies that affect millions of people with spondyloarthritis is one of the most meaningful activities I have been part of since becoming a public-facing advocate. When I can speak to my own member of Congress (Rep. Matsui) about laws she is deciding that directly affect my life, and when she decides to use part of my story in a press conference about healthcare law, I can see the difference I am making just by choosing to tell my story.
We need more advocates in the spondyloarthritis community. One of my hopes is to have other patients living with spondyloarthritis join me in telling your stories.
I have learned through nearly seven years of political advocacy that if I am experiencing something, it is highly likely that dozens, hundreds, thousands, or millions of other patients may also be experiencing the same thing. And that is exactly why I keep talking, and sharing my story. I know that it’s helping someone I may never meet.
I don’t expect you to dive in tomorrow, or to even know all the ways politics works. When I was just starting out, I was asked to testify on a California state bill about specialty drug costs (like for biologics). I had no idea what to say; I barely knew how legislation worked in committee hearings. When I told my mentor, she said, “All you have to do is tell your story. No one can tell it for you.” Her words have stuck with me, and I try to pass them along to others as often as possible. It is highly likely that something about your story with spondyloarthritis is impacted by local, state, or national policies – the key is telling it in a way that points to the bigger picture and helps others understand that change is needed.
I have also made lifelong friends through my advocacy work. I am grateful to call several staff from the Spondylitis Association of America friends, and I have met countless online friends face-to-face for the first time by saying “Yes!” to advocacy opportunities. I consider myself fortunate to have a network of driven chronic disease friends and peers around the country and world. Political advocacy is not the only kind of advocacy there is. I have participated in numerous patient council panels, taken online surveys, spoken at rallies, partnered with various awareness campaigns with nonprofits, and participated at health and medical conferences as a panelist and member. I have found that saying “Yes!” to a single opportunity can open numerous other opportunities.
How can you become an advocate or learn about top issues facing people living with Spondyloarthritis? The SAA unveiled its Advocacy page earlier this year. You can pick state or national issues to get behind and learn about SAA’s stance on those issues. You can send emails to your representatives through the SAA advocacy page, and as little as 30 comments on the same issue on a politician’s social media post is enough for them to pay attention! An easy way to get started as an advocate is to just start telling your story. The more you tell it, the more you’ll find the right words and discover your elevator speech, so to speak.
The most important part of being an advocate, to me, is making sure you are spreading reliable information, which means constantly checking your sources and dates to make sure articles you read feature content from peer-reviewed research. The Spondylitis Association of America is a resource I find most reliable, with staff that cares deeply about its mission and who are on the frontlines of funding research, attending medical conferences, and engaging directly with researchers and federal policy makers focused on issues related to spondyloarthritis.
I’ll be writing more articles over the next year about advocacy and spondyloarthritis awareness. What’s next for me? I’ll be reporting back from the ACR Annual Meeting in November, sharing current research and findings from thousands of rheumatologists and researchers (including patients!) from across the world whose lives are dedicated to learning about, seeking treatments, and improving quality of life for millions of patients across the globe living with spondyloarthritis and other rheumatic conditions.
I can’t wait to share what I learn there with you. Want to do some digging on your own? The schedule is out – leave a comment below if you see a session you would be interested in learning more about and I’ll see if it can fit in my schedule!
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