May 22, 2019

2019 RLS Advocacy Day on Capitol Hill

By Kris Schanilec

Thirty members of the RLS community from across the US gathered in Washington, DC, on May 3 for the first RLS Advocacy Day on Capitol Hill.

RLS patients and Foundation staff were joined by Jeffrey Durmer, MD, PhD, a member of the Foundation’s Scientific and Medical Advisory Board; and Sandra Katanick, a member of the Board of Directors; for a whirlwind day of meetings with congressional offices. An RLS Foundation delegation also met with congressional staff on May 2. Over the two days, the Foundation met with a total of 45 congressional offices, representing 16 states from across the country and including key members of committees that shape health policy.

Policy makers are currently debating which issues they will take on throughout this session of Congress. It is essential that RLS patients make themselves heard during these deliberations.

“Our first advocacy day exceeded everyone’s expectations,” says Karla Dzienkowski, executive director of the RLS Foundation. “This was an exciting opportunity for staff and RLS community members to join forces to advance our goals. We made headway in educating key offices that can champion our legislative agenda.”

Advocacy Day took place at the heart of the federal appropriations process, when Congress designates dollars to fund specific areas of the government – and at a time when Congress is engaging in oversight activities to implement key legislation that addresses the opioid epidemic: the Comprehensive Addiction and Recovery Act (CARA), and the SUPPORT for Patients and Communities Act.

The day began with a prep session led by the Health and Medical Counsel of Washington (HMCW). “Most folks don’t know what restless legs syndrome is, including people who make decisions at the highest level of government,” says Peter Herzog, a legislative associate at HMCW. “That’s where decision-makers rely on their staff who focus on these issues, on expert opinion, and on their constituents. RLS patients are both experts and constituents, and their input matters to legislators.”

Participants formed five teams, each with an agenda of back-to-back meetings about every half-hour, in the senate and house office buildings.

In the meetings, they shared their stories and challenges of living with RLS. They advocated for support on three key issues: increasing research funding for RLS, protecting appropriate access to opioid therapy for patients with severe RLS, and expanding RLS physician education and public awareness.

Donna Rivers and her husband, Martin, traveled from Oregon to participate. “It amazed me how little most people know about RLS. I was happy to be a part of that education process,” says Rivers, who volunteers as an RLS support group leader in Portland. “The experience was empowering in that I felt our plight as RLS sufferers was recognized. I believe the education provided to legislative staffers will be heard by our representatives.”

Rosemary Stader, who traveled from Ohio with her husband, Gregory, says that most of the congressional staff appreciated the meetings. “I think we made a difference! The people we saw were interested; they were engaged, wrote down notes, and I think they will support our cause.”

“It was win, win, win,” says Julie Herbert, from Missouri. “I got to advocate for the needs for those of us with RLS, to exercise my rights as a citizen, and to spend time with some wonderfully interesting people, many of whom also have RLS, reinforcing my awareness that I am not alone. One more win: I became increasingly aware of the great work that the folks at the RLS Foundation are doing on our behalf."

“I feel like anything we do to take action with regard to our RLS gives us more strength to deal with a disorder, which so often leaves us feeling frustrated and helpless,” Herbert adds. “I’m so glad I went.”

The RLS Foundation would like to thank all who participated in RLS Advocacy Day on Capitol Hill, all who joined in spirit, those who submitted letters and responded to calls to action, and those who continue to generously provide financial support for RLS advocacy efforts.

• Learn more about RLS advocacy.
• Read “Opioids: Are RLS Patients Getting Caught in the Crossfire?”
• Support our work! Become an RLS Foundation member, or make a donation.
• Stay tuned! Raise your voice in Washington by responding to our upcoming calls to action.