Restless Legs Syndrome Foundation Blog

Foundation Meets with Legislators

RLS patients need better treatments, better-educated medical providers, and access to all treatment options – including opioid medications in low total daily doses. This message was carried to US lawmakers and the National Institutes of Health (NIH) in February by the RLS Foundation.

A delegation met with the offices of 10 US senators and representatives on Capitol Hill – the sixth visit to Washington since the Foundation launched its advocacy initiative in 2017.

“We’ve made a lot of headway, but there are still knowledge and awareness gaps about the needs of RLS patients,” says Executive Director Karla Dzienkowski. “It’s important that we continue to educate legislators about RLS, and the need for more research to find better treatments and a cure. We also need to make sure that in health policy, RLS is differentiated from chronic pain, so that RLS patients don’t lose access to their opioid medications.”

Low total daily doses of opioids are an established and effective treatment for severe RLS. Most patients experience relief from their unrelenting RLS symptoms from only a fraction of the dosage of opioids prescribed for chronic pain, with relatively low risks of tolerance and addiction.

The RLS Foundation is calling for Congress to support:

• Increased federal funding for the NIH, the largest biomedical research agency in the world; and support for sleep disorders research through the Department of Defense.
• Access to ongoing opioid therapy for patients who need low total daily doses to manage severe RLS symptoms.
• Funding for programming at the Centers for Disease Control and Prevention (CDC) to educate providers and the public about diseases such as RLS.
• Funding for the CDC’s National Neurological Conditions Surveillance System, which collects and synthesizes data to support research.

Read the Foundation’s legislative and policy priorities.

For Carla Rahn Phillips, chair of the RLS Foundation Board of Directors, advocating on Capitol Hill was a new experience. “I was so pleased with how welcoming everybody was, how receptive they were to our message, and how engaged they were with the issues that matter a lot to us,” says Phillips. “Every staffer we talked to was particularly interested in personal stories about people who have RLS.”

RLS Foundation member Kathryn Camp, M.S., shared her personal story in the meetings. Like many RLS patients, Camp experienced augmentation as a side effect of dopamine medications, and after exhausting all other options, started opioid treatment.

A retired healthcare professional, Camp says she feels fortunate that she has good health insurance, is able to navigate the healthcare system to access opioid medications for RLS, and has a doctor and pharmacist who are supportive. “I worry about the patients across the country, and the globe, who don’t have these advantages,” she says.

The Foundation visited the offices of Sen. Bob Casey (D-PA); Sen. Kamala Harris (D-CA); Sen. Pat Roberts (R-KS); Sen. Tina Smith (D-MN); Sen. Joe Manchin (D-WV); Sen. John Cornyn (R-TX); Sen. Lamar Alexander (R-TN); Rep. Lucille Roybal Allard (D-CA-40); Rep. Jamie Herrera Beutler (R-WA-3); and Rep. Michael Burgess (R-TX-26).

Exploring all strategies for RLS research

The Foundation met with key institutes of the NIH: the National Institute on Drug Abuse, the National Center on Sleep Disorders Research, and the National Institute of Neurological Disorders and Stroke.

Congress has funded $4.1 billion for the NIH this fiscal year, thanks in part to the advocacy work of groups like the RLS Foundation. This budget funds some 50,000 competitive grants annually for researchers across the U.S. and internationally, as well as research conducted by scientists in NIH laboratories.

To access these funds, RLS researchers must submit exceptional proposals for studies that support NIH research priorities. In the meetings, the Foundation focused on identifying opportunities for RLS research that overlap with the NIH strategy.

Christopher J. Earley, MB, BCh, PhD, FRCPI, presented RLS research needs in areas such as model development, genetics, and biological dimensions. “The bottom line is to find new treatments,” says Dr. Earley, who is co-director of the Johns Hopkins Center for Restless Legs (a certified RLS Quality Care Center) and chair of the RLS Foundation Scientific and Medical Advisory Board.

“There is no substitute for face-to-face meetings with leaders of our national research agenda at the NIH. We covered a number of areas of potential overlap with RLS research where we can potentially collaborate and make progress in beating this disease,” Dr. Earley says.

Next steps: How you can get involved

Hearing from constituents can make a powerful difference to how legislators view and vote on issues. RLS patients and families have several upcoming opportunities to voice their needs to decision-makers in Washington.

• Join the RLS Foundation for our first Virtual RLS Advocacy Day on Friday, April 24. During this event, you can participate via phone, tablet or computer to create one voice from the RLS community. Register now.
• Year-round, RLS advocates can visit their members of Congress, either in their home states or in Washington. The RLS Foundation provides training and tools.
• Share your story, including how RLS impacts your daily life, the importance of access to low total daily dose opioids for your RLS treatment, and your experience finding a doctor to prescribe and a pharmacy to fill your opioid prescription. Your story may be included in letters to legislators asking them to help ensure continued access to opioids for RLS treatment.
• The RLS Foundation’s advocacy efforts are made possible solely through gifts from generous supporters. To make a donation, visit www.rls.org or call 512-366-9109.

Wash Your Hands and Keep an RLS Medical Alert Card Handy

The news is filled with information on the Coronavirus (also known as COVID-19). The disease it causes is a newly identified respiratory illness thought to spread by direct person-to-person contact. If the virus, which apparently can remain active for many hours outside the body, is on a surface, then someone can pick it up on their hands; touching their face can then cause infection. Symptoms include fever of 100.4° F or higher, dry cough, or body aches. Individuals at most risk are elderly with compromised health, have recently travelled, or been in contact with another individual diagnosed with COVID-19. If these symptoms develop, seek immediate medical care.

Living with a chronic medical condition like RLS may heighten concerns. That's why we are providing an RLS Medical Alert Card to keep in your wallet and to share with medical personnel. If you do become ill, they can refer to the list of medications to avoid and permissible substitutes for individuals with RLS. And to help you stay healthy, here are some practical tips to follow:

Don’t panic. Misinformation and fear mongering exist in the public realm. Depend on the Centers for Disease Control website (www.cdc.gov) and your local health department for the latest information on the corona virus. Some unscrupulous individuals are peddling useless products on-line at high prices. Don’t fall victim to their pitches.

Good hygiene tips:

• Wash your hands. Soap and water (20 second scrub - sing the Happy Birthday song twice) are your best defense against infection. Hand sanitizers that are 60% or more alcohol-based are a good second line of defense when soap and water is not available. Wash your hands often, especially after touching phones, keypads, handrails, and other shared surfaces.
• Don’t touch your eyes, nose, or mouth. Be sure to cover your mouth and nose with a tissue when you sneeze or cough; sneeze or cough into your elbow.
• Disinfect contact surfaces touched often (doorknobs, handrails, tables and cell phones). The EPA has an approved list of disinfectants here. Apple has announced that sanitizing wipes – but not sprays – are safe to use on its products.
• For the time being, eliminate handshakes and hugs; practice the “elbow bump” instead.
• Adopt safe food practices—don’t share your food with others and be vigilant about safe food handling and storage practices at home and if you dine away from home.

Avoid large crowds and any nonessential travel to limit exposure. Your state or local authorities may have provided guidelines to help you assess risk. Check with theaters, sports promoters, and others to see if events have been cancelled or postponed.

If think you are sick, please stay home and contact your healthcare provider. If a visit to a healthcare provider is necessary, don’t use public transportation. Take this RLS Medical Alert Card to share with medical personnel to make them aware of medications to avoid and permissible substitutes for individuals with RLS.

U.S. Public Health Service coronavirus resources:

• Centers for Disease Control and Prevention (CDC)
• Center for Medicare and Medicaid Services (CMS)
• National Institutes of Health (NIH)
• Food & Drug Administration (FDA)