I Am an Advocate

Editor’s Note: This month, “From the College” continues its look at advocacy from the viewpoint of ACR and ARHP advocates. Below, Susan Leigh, a rheumatology patient advocate from Delaware, explains how her advocacy efforts have taken her from a patient to a participant in the process.

Earlier this year, I was privileged to be part of the ACR’s Advocates for Arthritis advocacy visit. My rheumatologist recommended that I apply for the event, and I was thrilled when I was accepted, even though my acceptance wasn’t necessarily competitive (I was the only patient representative from Delaware).

Public advocacy has long been the ideal in my family. Begun by my grandfather who was an immigrant from Belarus, carried on by my father who was an educator in poverty-stricken Brooklyn, and passed down to me—a former inner-city schoolteacher who was forced to retire after 25 years of teaching due to worsening lupus. (I never resented my disease as much as when I was told that I could no longer teach.)

Susan Leigh and her husband

One Advocate, One Story, Two Big Moments

My experiences at Advocates for Arthritis exceeded my hopes. Monday afternoon was an informative training session. I knew that protocol would be important on Capitol Hill if we wanted to be heard, and I was glad to be given tips on how to introduce our cause and make our points effectively. The cocktail hour and dinner following were great—what lupus patient wouldn’t want to be in a room with 80 rheumatologists?

The next day, we met in our teams and began visiting offices on Capitol Hill. I was disheartened to see how many other groups were looking for a congressman’s or senator’s ear. At times, it was hard to push through the crowd to get into an office, and I often wondered how we make would make ourselves stand out and heard. It wasn’t until the day progressed (and the weeks following, as it often pans out in lobbying) that I found the stories we shared would make a difference.

Being the only patient from Delaware, I was assigned to the Pennsylvania team, and we met with several members of Congress that morning. In the afternoon, I decided to strike out on my own and face the Delaware representatives in their dens, alone. What followed was nothing short of incredible. At Congressman Mike Castle’s (R-DE) office, I began to meet with a legislative aide who was not involved in healthcare. After 10 minutes of conversation, she said she felt the aide on health issues “had” to meet me.

After 30 minutes with the senior aide on health issues, I was told that Congressman Castle would want to meet me. I had 10 minutes one-on-one with him—the other groups had only had handshakes and photo ops—and he agreed to sign the “Medicare Fracture Prevention and Osteoporosis Testing Act” and support a fix to the scheduled Medicare physician fee cuts.

Buoyed by my success, I headed to Senator Joe Biden’s (D-DE) office. There, I met with his senior legislative aide on healthcare for 45 minutes. I was assured that the Senator would not only sign all three bills that the ACR was presenting, but that he had also signed two bills increasing spending on lupus research. I was asked, if the senator wanted to discuss this further, would I be available for his phone call—you can take a guess at my answer!

As an ACR advocate and an Advocates for Arthritis participant, I have reaffirmed my belief that things can get done on Capitol Hill. The lessons I learned from my father and grandfather as they fought for causes that were important to them continue as I fight for my health and the health of future generations. I thank the ACR for the chance to experience this incredibly fulfilling moment in my life, and I encourage anyone who can make the trip to participate in Advocates for Arthritis. You will be amazed at what you can accomplish. Just look at what happened when one person from Delaware knocked on a few doors!