Restless Legs Syndrome Foundation Blog

Creating Connections on Capitol Hill

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.

Join us in Washington DC

On behalf of the RLS Foundation, I invite you to join us for the 2019 RLS Advocacy Day on Capitol Hill on Friday, May 3, in Washington, DC.

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 RLS Advocacy Day on Capitol Hill will give RLS patients and caregivers the opportunity to advocate on behalf of our community in the halls of Congress. Throughout the day, you will meet with staff at the offices of your US senators and members of the House of Representatives to discuss the importance of advancing medical research, increasing access to treatments, and promoting education and awareness for RLS. These issues are vital to improving quality of life for patients and ultimately finding a cure for RLS.

As you know, most people aren’t aware of the daily challenges that come with an RLS diagnosis, and nobody communicates the needs of the community better than RLS patients themselves.

Advocacy is as easy as sitting down and telling your story. Many of you have already done this in writing, or in person with staff in your local congressional offices. Members of Congress and their staff want to see and hear directly from you. It’s their job to represent your concerns in the policy-making process in Washington.

Now, more than ever, your voice in policy making is needed. At each legislative meeting, we will discuss the importance of increased federal support for RLS medical research, education and awareness, and access to treatments.

We know that travel is often challenging for those with RLS. If your RLS prevents your attendance, we appreciate your help in spreading the word and supporting our important advocacy work in any way possible. Thank you for your participation in RLS advocacy efforts. We look forward to seeing you in Washington on May 3!

Please stay tuned for more information about this important event. If you have any questions, please contact me at herzog@hmcw.org.

RLS Foundation Returns to Washington

In November, an RLS Foundation delegation again joined the Health and Medical Counsel of Washington (HMCW) in Washington, DC, to visit the offices of legislators and federal agencies involved in health care policy.

The meetings took place at a critical juncture in the midst of the nationwide opioid crisis. The government is moving to implement H.R. 6, the SUPPORT for Patients and Communities Act. This law, passed in October, calls for tactics to promote treatment and recovery from opioid addiction, and to improve prevention.

Many people with severe RLS find themselves caught in the crossfire. Even though there is no federal legislation or policy that prohibits prescribing opioids for RLS, the increased scrutiny of prescribing practices has physicians increasingly reluctant to use them; some have stopped prescribing opioids altogether.

"The Foundation's opioid advocacy initiative has already made significant progress, but the issue is far from resolved,” says Lew Phelps, chair of the RLS Foundation Board of Directors. “We were successful in ensuring that Congress didn't include anything in the recent opioid legislation that would have harmed the ability of RLS patients to obtain needed and appropriate treatment. However, the implementation of this legislation still presents potential challenges. We have to stay engaged to help ensure that physicians continue to be allowed to prescribe opioids for RLS."

In the DC meetings, a Foundation team led by Executive Director Karla Dzienkowski emphasized that opioids are a legitimate and critical treatment for severe RLS. About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. When all other treatments have failed, opioids at low total daily doses are highly effective at alleviating RLS symptoms, and clinical guidelines are available for healthcare providers to use them appropriately.

“It’s important to spread the word that there are medically appropriate uses of opioids taken in low total daily doses,” says John Winkelman, MD, PhD, director of the RLS Quality Care Center at Massachusetts General Hospital. “We need to help doctors with safe prescribing – not overprescribing, but more effective and safe prescribing.” With support from the RLS Foundation, Dr. Winkelman is conducting a study to better understand the long-term safety of opioids in RLS.

Dr. Winkelman and Jeffrey Durmer, MD, PhD, of Fusion Health, joined the delegation on behalf of the Foundation’s Scientific and Medical Advisory Board. Sandra Katanick represented the RLS Foundation Board of Directors, and also the RLS patient community.

In the meetings the Foundation also stressed the importance of federal funding for research for the National Institutes of Health and the Department of Defense, both of which have growing portfolios in sleep disorders research.

Agency meetings: Making the RLS patient voice heard

The Foundation team met with the US Department of Health and Human Services (HHS) Pain Management Inter-Agency Task Force, led by Vanila Singh, MD.

The new opioid legislation requires HHS to study the impact of federal and state laws and regulations that limit opioid prescribing and submit a report to Congress. The Pain Management Inter-Agency Task Force is specifically charged with finding any gaps or inconsistencies in existing clinical best practices for managing acute and chronic pain.

It is critical for this report to acknowledge that opioids are used differently to treat RLS than to treat chronic pain, so that RLS patients continue to have appropriate access to opioid medications. Dr. Singh and her colleagues showed a strong understanding of RLS and the need for this accommodation, says Dzienkowski. “They were very receptive to the needs of the RLS community.”

The HHS Task Force will soon publish a draft of its recommendations, and the public will have the opportunity to comment over a 90-day period. The Foundation will notify the RLS community when this comment period begins with a call to action through its eFriends monthly newsletter and other channels. (Sign up to receive eFriends.)

The Foundation also met with the Centers for Disease Control and Prevention (CDC), which has issued a guidelines for prescribing opioids for chronic pain; and with the Substance Abuse and Mental Health Services Administration (SAMHSA), whose representatives sit on advisory groups to health care policy committees and working groups throughout the federal government. These meetings were a strong first step in building relationships within the two agencies. In follow-up, the Foundation will meet again with the CDC in December.

Congressional visits: ‘We now have RLS champions in Congress’

The RLS Foundation met with staff in the offices of Sen. Lamar Alexander (R-TN), Sen. Elizabeth Warren (D-MA), Sen. Bill Nelson (D-FL), Sen. Kamala Harris (D-CA), Sen. John Cornyn (R-TX), Sen. Johnny Isakson (R-GA), Rep. Rosa DeLauro (D-CT), Rep. Frederica Wilson (D-FL), Rep. John Yarmouth (D-KY) and Rep. John Lewis (D-GA).

Many of the Congressional staff members said that they are hearing from their constituent communities about barriers to treatment or providers unwilling to prescribe opioids in light of the new law.

Katanick observes, “I think we made a very compelling argument for the safe prescribing of opioids for conditions other than chronic pain, and the legislators’ duty to be certain that any rulemaking is not so restrictive that it actually harms patients.”

“We now have RLS champions in Congress,” says Dzienkowski. “In this round of meetings in Washington, we’ve seen a definite increase in awareness and support for the RLS community.”

“I want to thank everyone who has made donations to the Foundation’s advocacy initiative, responded to our calls to action, or met with their elected officials. At the Foundation, we are hearing from many people with severe RLS who are having trouble accessing their opioid medications. With your help, we are making a difference – for the RLS community today and for generations to come.”

The meetings were coordinated by HMCW, a government relations organization with nonprofit and health care industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. Also attending were Kris Schanilec of the RLS Foundation; and Dale Dirks, Dane Christensen, and Peter Herzog of HMCW.

To make a financial gift in support of the RLS Foundation Advocacy Initiative, visit www.rls.org.

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Read about the Foundation’s advocacy trips to Washington in February and June 2018.
• Watch for a complete update on RLS advocacy in the next issue of NightWalkers magazine, coming in February.