I was diagnosed with RA almost 15 years ago, after being misdiagnosed for four years. I am now 61. The delay in receiving an accurate diagnosis caused me to pay a high price in my health due to the lack of immediate, aggressive treatment. My experiences with RA and the enormous challenges of finding the right treatment inspired me to join the ACR’s Advocates for Arthritis, uniting with fellow patients, rheumatologists, and others to educate members of Congress about our diseases and treatments.
I am considered treatment resistant, as none of the biologic drugs have worked for me. The ongoing, fast advancement of my RA has caused considerable damage to my joints and connective tissues, including the ligaments and tendons. I have had to walk with a walker for the past three years because my right foot has turned inward, leaving my balance unpredictable. I have fallen several times in the past few years, broken my left wrist twice, and have had fractures in my spine. Additionally, my hands continue to become more deformed over time. Simple tasks that I once took for granted are now impossible as my disease continues to advance without anything to slow down the process. I live daily with excruciating pain.
My story is one of millions of stories across America. That is why I consider myself to be fortunate indeed to have been able to take part in the ACR’s Advocates for Arthritis fly-in conference, so that I can share my personal story. We need the help of members of Congress to ensure that greater funding becomes available to researchers for improved treatments for people with rheumatic diseases, and to ensure that patients like me may actually have access to those treatments once they become available, without excessive patient cost-sharing or coinsurance fees.
Awareness is key, and the ACR does an amazing job at bringing knowledge to those lawmakers who can make these life-saving decisions. Bravo, ACR! I have lived, survived, and often thrived with severe RA, moderate lupus, and Sjögren’s syndrome for the past 15 years. This is a very personal journey for me. Joining other ACR advocates, whether I am physically in Washington, D.C., or as a virtual participant, is a great passion of mine. I may never see a cure for these devastating diseases in my lifetime, but I am proud to work together with rheumatologists, health professionals, and other patients to ensure that generations after us can live the cure.
I am proud to have spent the past 12 years as an advocate and counselor working for those with autoimmune rheumatic diseases. This passion, combined with the work done through the ACR’s annual Advocates for Arthritis conference in Washington, D.C., is vital to us all. You can follow me, along with many others who will be physically present, at www.facebook.com/InternationalAutoimmuneArthritisMovement as we cover all of the action from the event, and from my sofa!
It is an honor to be part of this wonderful and important time. We are advocating for better access to care and treatments, and for greater awareness in the minds and hearts of our representatives in Congress. I want to thank the ACR for this great opportunity to serve our community. I encourage rheumatologists, patients, and health professionals to get involved this September, whether in person or virtually. With us working together, I am hopeful that our advocacy may help more people access care and increase research funding to bring us closer to a cure.
The Reverend Hillelson is an ACR patient advocate based in Dallas.
You Can Advocate For Arthritis, Too!
Join the Virtual Advocacy Day, September 10
ACR/ARHP members and patient advocates will meet with members of Congress on September 10 as part of the 2013 Advocates for Arthritis. Even if you can’t join us in person, you can still play an important role by becoming a virtual advocate. Visit the ACR Legislative Action Center at www.rheumatology.org/ActionCenter on September 10 to send a special message to Congress.
It’s August Recess—Members of Congress Are Home and Eager to Meet with You
Members of Congress will be working in their states and districts meeting with constituents from August 5 through September 6. This is the perfect time to meet with your representative and senators. Speak up for rheumatology and help educate lawmakers on the critical issues facing our community. For help scheduling or preparing for a meeting with your members of Congress, contact ACR Government Affairs staff at [email protected] or (404) 633-3777.
