October 11, 2019

One Man’s Advocacy Journey to Make an Impact

By Stephen Smith

Stephen Smith is a dedicated member and volunteer at the RLS Foundation. He is always eager to participate in any way possible to promote RLS awareness and education. Steve has served as a Discussion Board Moderator for over five years, answering questions and providing resources at all hours of the night online. He gives many people hope and the knowledge that they are not alone by sharing his RLS story on video. He is an avid runner and has retired from a demanding career in the high tech industry and moved to Colorado with his wife, Deb, for better climate and a more relaxed lifestyle.

Two years ago, when the Foundation announced its advocacy program, I knew that this was something that I had to do. My RLS requires the use of opioids for treatment, yet the political climate where I live is such that almost none of the doctors in town is willing to prescribe them for any reason other than surgery. Everyone says that "someone should do something," and I knew that in this case, "someone" had to be me.

Following the Foundation instructions on how to get involved, I contacted the Health and Medicine Counsel of Washington (HMCW), their policy advisors in DC. Almost immediately, I received a reply email with detailed instructions on how to contact the local offices of my congressional representatives. I was advised to talk about my life with RLS, the problems that it causes for me, and three different issues for which the Foundation was asking Congress for help. I was also provided a set of "leave behind" documents to give to the congressional staffers I met with.

At all three meetings, I was warmly received by the staffers, and all the meetings went very smoothly. I was also able to make personal connections with each person I spoke with. After talking to me, one of the staffers said that she now suspects that her daughter may have RLS, which she would discuss with her pediatrician at their next visit. A week after the meetings, I sent thank you emails to each person I spoke with, and all three replied to let me know that they had passed the "leave behind" information along to their staff in Washington. One congressman's staffer even contacted me a few weeks later to tell me about an RLS-related development at the regional Veteran's Affairs office that covers part of the congressman's district.

And then last May, I was fortunate enough to travel to Washington to participate in the Foundation's RLS Day on the Hill. This was a fascinating experience and a real-life civics lesson. We were divided up into teams by state and briefed about how the visits would proceed. Then each team visited a number of offices for the states represented on the team. Fortunately we visited the office of my congressman, Scott Tipton. At each office, the constituent for that member of Congress would say something about the challenges of living with RLS, and then the group would join in to cover the various issues of interest to the Foundation, just like I did during my local visits the previous summer.

The call went out in July that it was time once again to visit with the local offices, preferably timed during the August Congressional Recess when all of our representatives return home for local visits. I signed up, and HMCW sent me an updated set of issues to discuss and new "leave behind" documents. When I called Congressman Tipton's office, his district director remembered me from the previous year, and we chatted a bit about RLS while he checked his calendar. I had a major stroke of luck in that Congressman Tipton himself would be in town the following week, and there was a one-hour opening in his schedule. When I told the HMCW staff about this, they suggested I ask Congressman Tipton to sponsor a congressional resolution recognizing RLS Awareness Day on September 23.

The following week, I was excited to be able to meet Congressman Tipton in person, to have a chance to talk with him directly about the issues that we face with RLS and to specifically ask for his help to recognize RLS Awareness Day. The meeting went wonderfully. I found out that Congressman Tipton has several close friends with RLS, so he was somewhat aware of the challenges that we face. When I asked Congressman Tipton if he would sponsor the congressional resolution for us, he readily agreed.

In mid-September, I received an email from HMCW asking for help. There was some sort of snag in the process of getting the RLS Awareness Day resolution processed through Congressman Tipton's Washington office. HMCW asked me to contact my local office to push from my end while they also worked to clearing the problem in Washington. An email to the district director in my local office resulted in an almost immediate reply that yes, he remembered that Congressman Tipton had agreed to sponsor the resolution and that he would call Washington immediately. I passed this along to HMCW, who also contacted the Washington office. Fifteen minutes later, the snag had been cleared. So, on Wednesday, September 18, Congressman Tipton read into the Congressional Record a resolution recognizing September 23 as RLS Awareness Day.

To enact change in legislation that affects millions of individuals with RLS, each of us can play a role – whether that is participating in letter-writing campaign coordinated by the RLS Foundation, visiting with your legislators' local offices, attending RLS Advocacy Day on the Hill or donating to the Foundation’s advocacy program so we can all maintain a presence in Washington. These efforts reinforce our goals of increased funding for RLS research at the National Institutes of Health, provider education at the Centers for Disease Control, and access to opioid therapies for severe RLS. If we each step forward to do our individual part, our combined effort will allow us to achieve these goals that are so important to every one of us. So, what is your contribution going to be?