Restless Legs Syndrome Foundation Blog

On February 4, 2024 RLS Foundation Executive Director Karla Dzienkowski, board chair Dr. Shalini Paruthi and staff member Adrianna Colucci traveled from their southern states to Washington, DC. Spanning two days, they met with 10 legislative offices, educating representatives on RLS and its impact on the patient community. These meetings emphasized the need for increased research funding, enhanced education and awareness and protected access to critical therapies including low-total-daily dose opioids. This visit comes at a pivotal time when committees are making key decisions on policy issues within federal agencies.

The United States Senate Committee on Appropriations, in particular, was targeted. This committee has jurisdiction over all discretionary spending in the Senate. Their responsibility is to write legislation allocating funds to federal agencies and departments each year.¹ The RLS Foundation met with the offices of Senators Jon Tester (MT), Jack Reed (RI) and John Boozman (AR), all of whom serve on the Appropriations Committee. Philip Goglas, managing partner at the Health and Medicine Counsel (HMC) and Matt Duquette, coordinated the Capitol Hill meetings. Goglas states that “we meet with appropriators because they decide how much funding the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) receive and further, what conditions are eligible for study.”

The Foundation asked that the NIH be provided with sustained funding for fiscal year (FY) 2024 of at least $50.924 billion. Researchers can apply for grants to conduct crucial RLS research through funding across relevant NIH centers.

The Foundation also requested at least $6 million in funding for the Chronic Diseases Education and Awareness Program (CDEA) at the CDC. The CDC has an active public health campaign dedicated to sleep disorders which will end in 2024.² Funding for the CDEA allows valuable public health efforts to increase education and awareness to continue.

Meetings with members of the Defense Committee and Subcommittees from both the Senate and House were also pursued, including the offices of Senators John Tester (MT), who is Chair of the Defense Subcommittee, Jack Reed (RI), and Congressman Steve Womack (AR). The Defense Committee oversees the nation’s military including the Department of Defense (DoD). The DoD Peer-Reviewed Medical Research Program (PRMRP) is a program designed to support research to enhance the health and well-being of military service members, veterans, retirees, and their family members. RLS is a major sleep disorder that affects an estimated 40,000 active-duty military personnel. Including “sleep disorders” in the PRMRP, allows researchers to apply for grants related to sleep medicine, including RLS. The RLS Foundation’s Scientific and Medical Advisory Board member, Dr. Brian Koo of Yale University, was awarded a research grant under the PRMRP.

The Foundation also met with members of the House Energy and Commerce and Ways and Means committees as well as the Labor Health and Human Services subcommittees which have oversight on policy affecting healthcare, specifically for opioid-related legislation. The Foundation asked for accommodations for patients who rely on the regular use of low-total-daily doses of opioids to manage their RLS. When legislation addressing the opioid epidemic is introduced, it is important to consider the needs of the RLS community by carving out the same accommodations for the use of opioids in other disorders such as sickle cell anemia, cancer and palliative care. The Foundation stressed the need for physicians to prescribe opioids appropriately and without arbitrary barriers.

Representing the RLS community as both a patient and sleep physician, Dr. Paruthi emphasized that the RLS community needs additional research to better understand the pathophysiology of RLS and to improve treatments. “We work with legislative staff to shed light on what RLS individuals suffer from and how it disrupts daily life,” she says.

Advocacy plays a pivotal role in shaping public policy, bridging the gap between the community and lawmakers. Thank you to Matt Duquette and Phil Goglas from the HMC for coordinating these meetings and leading our advocacy efforts. If you would like to learn more about how to become involved in RLS advocacy, go to https://www.rls.org/get-involved/advocacy.

¹“Committee Jurisdiction: United States Senate Committee on Appropriations.” United States Senate Committee on Appropriations, www.appropriations.senate.gov/about/jurisdiction.
²“National Healthy Sleep Awareness Project.” Centers for Disease Control and Prevention, 14 Dec. 2022, www.cdc.gov/sleep/projects_partners.html.