JULY 15, 2018

In June, the RLS Foundation visited Washington for a second round of meetings to advocate for research funding and for continued patient access to opioid medications to treat severe RLS.

Led by Executive Director Karla Dzienkowski, the Foundation team met with members of Congress who are on key legislative committees that have jurisdiction over health policy, and with two groups at the National Institutes of Health (NIH).

“Our meetings at Congress and the NIH were very important to moving our advocacy program forward,” Dzienkowski says. “We had the opportunity to meet with Congressional staff who are directly involved in opioid-related legislation. We are also excited to be deepening our relationships at the NIH and taking meaningful steps to advance RLS research.”

The Foundation team met with staff in the offices of Sen. Sheldon Whitehouse, D (RI); Sen. Bob Casey, D (PA); Sen. Elizabeth Warren, D (MA); Rep. Markwayne Mullin, R (OK); Rep. Conor Lamb, D (PA); Rep. Katherine Clark, D (MA); and Rep. Michael Burgess, R (TX).

The discussions centered on the need for a safe harbor for RLS in any upcoming legislation or policy that might restrict access to opioid medications. “Staffers shared that over 50 opioid bills are under consideration,” says Dzienkowski. For the millions of Americans who have chronic, unrelenting RLS, opioid medications taken in low total daily doses can be very effective for controlling symptoms.

The Foundation team also asked legislators to support two research priorities: $2 billion in increased funding for the NIH in fiscal year 2019; and continued inclusion of “sleep disorders” as a category eligible for grants by the Department of Defense.

At the NIH, John Winkelman, MD, PhD, gave a presentation on behalf of the Foundation to the Sleep Disorders Research Advisory Board (SDRAB) of the National Heart, Lung, and Blood Institute. Dr. Winkelman is director of the RLS Quality Care Center at Massachusetts General Hospital and a member of the Foundation’s Scientific and Medical Advisory Board.

The SDRAB is a federal advisory committee that sets the strategy for sleep disorders research at the NIH, and the meeting was an opportunity to highlight the unmet needs of RLS patients. RLS Foundation Board member Linda Secretan is one of two patient advocates on the SDRAB.

In his presentation, Dr. Winkelman discussed limitations of RLS treatments and the importance of research, including his current study to evaluate the long-term use of opioids to treat RLS.

“We had a very positive discussion,” Dr. Winkelman says. “It was important to describe the existing landscape of RLS treatment options, particularly as not everyone at the table was fully aware that many people with RLS continue to suffer for a variety of reasons, such as augmentation. It was equally important to raise awareness about the effectiveness of low total daily doses of opioid medications as a therapy for severe RLS.”

The Foundation also visited the National Institute on Drug Abuse and met with members of the Division of Neuroscience and Behavior, which supports research on drug use and addiction. Dr. Winkelman led a lively discussion on the neuroscience of RLS and how new drug therapies might be developed to treat the disease.

“We’re always looking for new ways to intervene to prevent or treat RLS,” Dr. Winkelman says. “We discussed what we already know about what causes RLS in the brain, and the various ways we might learn more about the neurological pathways involved. We came away with new ideas to explore for research.”

The meetings were coordinated by the Health and Medicine Counsel of Washington (HMCW), a government relations organization with nonprofit and healthcare industry expertise that is partnering with the RLS Foundation to guide its advocacy efforts. In addition to Dzienkowski and Dr. Winkelman, the delegation included Kris Schanilec, RLS Foundation communications; and Dane Christiansen, Dale Dirks and Peter Herzog of HMCW.

How You Can Take Action

The RLS Foundation is working hard to advocate on behalf of the RLS community. The Foundation needs you, an RLS patient or family member, to amplify these efforts by meeting with your legislators. You can meet with your members of Congress at offices in your home state or in Washington. Elected officials want to hear directly from their constituents, and sharing your personal experiences is the best way to educate them about the needs of RLS patients.

The Foundation has resources to help you get started. Contact Peter Herzog at herzog@hmcw.org or visit www.rls.org to learn more.

RLS Advocacy: Our Progress

Since October 2017, the RLS Foundation and its partners at HMCW have:

• Delivered letters to members of Congress from 200+ individuals who responded to a request for personal stories about opioid medications and RLS. 
• Attended Congressional meetings and hand-delivered position letters to committees that are crafting legislation related to opioid medications and/or biomedical research funding. These efforts helped support passage of the FY2018 appropriations bill, securing a $3 billion increase in funding to the NIH. 
• Delivered 40 letters to members of the Senate Defense Appropriations Subcommittee from RLS Foundation members who responded to an Action Alert to support inclusion of “sleep disorders” on the Department of Defense Peer Reviewed Medical Research Program in FY2019. 
• Met with 23 Congressional offices, three NIH institutes, the NIH Sleep Disorders Research Advisory Board, and the U.S. Food and Drug Administration (FDA). 
• Coordinated or supported meetings by the RLS Foundation team and Foundation members with US senators and representatives of 13 states.

Why Are Opioids Needed for RLS?

About 1 in 33 Americans – 3 percent of the US population – has RLS that is severe enough to need daily medical treatment. Unfortunately, treatment options are limited, and FDA-approved medications for RLS often have serious, long-term side effects.

When all other options have failed, opioids at low total daily doses are an established, highly effective treatment option for people with RLS. Clinical experience among experts has not shown the degree of drug misuse, dependency or addiction commonly associated with opioid use to treat chronic pain. The RLS Foundation actively conducts educational outreach to help ensure that healthcare providers know how to diagnose and treat RLS, including appropriate use of opioid medications. For more information, visit www.rls.org.