Restless Legs Syndrome Foundation Blog

Advocacy Action Alert: Support Sleep Disorders in the Peer-Reviewed Medical Research Program

Dear RLS Community,

The United States Senate is currently crafting the FY 2025 Department of Defense (DoD) appropriations bill, which will determine which medical conditions are eligible for research funding through the Peer-Reviewed Medical Research Program (PRMRP). Today, we need your help to ensure “sleep disorders” are included in the PRMRP for FY 2025! Take action now by contacting your state’s Senators to ask for their support.

Why It’s Important: The DoD PRMRP is a program designed to support research that enhances the health and well-being of military service members, veterans, retirees, and their family members. Restless Legs Syndrome (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 compete for $370 million in federal research funding each year.

Action: Please contact your Senator and ask that they support the inclusion of “sleep disorders and restrictions” in the DoD PRMRP’s eligible conditions list in FY 2025.

How to Participate:

1. Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action with the subject line: PRMRP RLS Advocacy Action Alert. Provide your mailing address and zip code to help Matt identify your Senator and connect you with the correct staffer.

Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we know which offices have been contacted.

2. Once you receive a response from Matt, email your Senator. You can copy and paste the sample message below:

Sample Message:

Subject line: FY 2025 DOD PRMPRP

Dear [Staffer Name],

My name is [your name] and I am a constituent of [insert representative’s name] and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please support the community’s FY 2025 request to ensure that sleep disorders and restrictions are once again included in the DoD PRMRP’s eligible conditions list for FY 2025.

[Please briefly share your personal story in 2-3 sentences.]

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

3. Personalize your message by briefly sharing your RLS story in 2-3 sentences. 4. Send!

Just a few minutes of your time could help influence the future of sleep-related research funding. If you have any additional questions, please reach out to info@rls.org. RSVP to our Facebook event page to stay up-to-date. Thank you for your support as an RLS and sleep advocate!

Advocacy Action Alert: Support Sleep Disorder Research

Calling all RLS advocates! The United States Congress is currently working on the annual spending bills for FY 2025. Congressman Adam Schiff is leading an official congressional sign-on letter, asking to prioritize funding for sleep disorders awareness and research. To increase support for this letter, we ask that you reach out to your congressional House representatives today!

Why It’s Important: This letter asks the House Appropriations Committee to address the critical needs of the sleep community. Though there is strong scientific evidence of sleep’s critical role in overall health, the CDC only has a few narrow sleep programs. It is important for the CDC to strengthen this foundation and modernize sleep public health, education, and awareness activities.

Action: Please contact your House representative and ask them to sign a Congressional letter in support of federal research, scientific advancements, and public health efforts – focusing on sleep health and sleep disorders within the Committee Report accompanying House FY 2025 Labor, Health and Human Services, Education, and Related Agencies (L-HHS) Appropriations Bill.

How to Participate: Email Matt Duquette (duquette@hmcw.org) at the Health and Medicine Counsel to indicate that you are interested in taking action. Be sure to provide your mailing address and zip code to help Matt identify your representative and connect you with the correct staffer. Please copy Adrianna Colucci (adrianna@rls.org) at the RLS Foundation so we can track which offices have been contacted.

Please email the staffer, attach the sign-on letter, and ask for their support. You can use the sample message below to assist with your outreach.

**Sample Message**

Dear [Staffer Name],

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write today to ask that your office please join the community’s FY 2025 appropriations sign-on letter to advance medical research in sleep, circadian, and sleep disorders, and improve public health. I have attached a copy of the letter and its corresponding Dear Colleague to this message and ask that you sign on to this critical letter. To sign on, please complete this form via Quill and please contact Kaitlyn Kelly at Kaitlyn.Kelly@mail.house.gov with any questions.

[Please briefly share your personal RLS story in 2-3 sentences.]

Thank you for your time and your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

****

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Last year because of our advocacy efforts, the sign-on letter attracted numerous bipartisan supporters and we are hoping to attract even more support this year to demonstrate our growing influence on Capitol Hill and impact on medical research and public health.

Thank you for your support as an advocate! Connect with us and RSVP on our Facebook event page for more information. If you have questions, please email info@rls.org.

When Should I Visit an RLS Quality Care Center?

This article is based on the QA from the webinar titled “When to Visit an RLS Quality Care Center,” presented by Avinash Aggarwal, MD. Dr. Aggarwal is the Quality Care Center Director at the University of Pittsburgh Medical Center in Pittsburgh, PA. The complete webinar recording can be found in the Member Portal on www.rls.org.

1. What is the desired outcome of a visit to a Quality Care Center? Reduced symptoms? Lifestyle changes? Dietary changes? Exercise?

When visiting a QCC, all of these issues are addressed. A thorough medical history of past and present medications, including supplements and over-the-counter medications, will identify potential RLS triggers. Physicians and patients work together to determine the desired outcome of their visit.

2. How do you ensure you will get assigned to the expert who can treat your severity of RLS?

Only the providers listed on the RLS Foundation website at www.rls.org/treatment/quality-care-centers are certified RLS experts. Patients should thoroughly research each physician on the Foundation website and ask for an appointment with the provider that is close in proximity and is a fit for all healthcare needs.

3. Which medical records do you bring to your first appointment?

Bring all medical records available and send them ahead of time, if possible. Medical records include physician notes, a list of previous medications and their side effects, current medications, and test results, specifically results from a complete iron panel.

4. What does a QCC offer me if I have a local doctor and have already tried all known classes of medications?

QCC providers think outside of the box, considering the patient’s complete history and a comprehensive neurological examination. All patients are administered the International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) on both their initial and subsequent visits. With adequate treatment, the severity rating can decrease from high to extremely low, sometimes zero. As experts in the RLS field, QCC certified providers can identify triggers and treat patients based on the latest guidelines.

5. What should I expect from the first visit, and can follow-up visits be done remotely?

The first visit is typically about an hour long. A QCC provider performs a thorough history and examination, reviews the current treatment plan, and discusses available therapies. The International Restless Legs Syndrome Study Group Rating Scale (IRLSSG) is also administered on the first visit to gauge RLS symptoms. A tailored treatment plan is developed for the patient utilizing a shared decision-making process. Follow-up visits can be done remotely.

6. How can we find the QCC closest to where we live? Is there a list of locations?

There are 10 QCCs in the United States and two in Europe. A list of all centers as well as contact and appointment information is available on RLS Foundation website. If you need assistance, contact the RLS Foundation at info@rls.org.

7. How long is the wait time for an appointment?

Every center is different and wait times are variable. At the QCC in Pittsburgh, there is a cancellation list that reduces waiting time.

8. What training and expertise do the QCCs have that sets them apart?

QCC physicians are board-certified in sleep medicine and many are neurologists. All QCC providers abide by the latest RLS treatment guidelines and provide comprehensive care. QCC physicians undergo a rigorous process to be credentialed.

8. If I have visited a QCC in the past, are there any reasons I should visit one again?

If symptoms are not controlled, if there are significant side effects, or if a patient is not satisfied with disease control, another visit to a QCC may be considered.

10. Are Canadians able to visit the QCCs?

QCCs welcome patients from around the world. Patients should speak to their insurance company to determine if there is coverage or if there will be out-of-pocket expenses.

11. Can out-of-state quality care centers continue with opioid therapy?

Opioid therapy coverage depends on individual state and insurance company regulations.

12. Is there a QCC available for consultations and treatment for out-of-state patients who are not able to travel?

Since COVID, some out-of-state appointments are available. Coverage will depend on the insurer and out-of-pocket expenses may apply.

Meet the RLS Foundation's Newest Team Member!

By Adrianna Colucci, RLS Foundation Communications Coordinator

Anjana Ganesh is a senior at the University of Texas at Austin (UT). She recently joined the RLS Foundation as an intern for the remainder of her senior year. In her free time, she enjoys reading, dancing and taking walks around Austin. The RLS Foundation is excited to have her join the team!

Q. What motivated you to pursue this internship opportunity?

A. I am part of UT’s Bridging Disciplines Program, where we are exposed to interdisciplinary classes. My certificate is called Patients, Practitioners & Cultures of Care. As part of the certificate, we are required to complete an internship, and I was really interested in learning more about the nonprofit side of healthcare. I discovered the Restless Legs Syndrome Foundation in an old blog post by my program. Upon delving into its mission and objectives, I found it to be an ideal fit for me. Not only did it align with my background in neuroscience, but it also presented me with an opportunity to explore a new dimension of healthcare.

Q. What has been the most exciting part of working with a new team?

A. It has been so exciting to work at the RLS Foundation! Each person I interact with has a unique skill set, ideas and perspectives, and everyone is so willing to let me learn. I’ve found that this diversity sparks stimulating discussions, leading to fresh approaches and innovative solutions to challenges. Everyone is so supportive and kind, which creates an incredibly compassionate atmosphere where I feel comfortable sharing ideas and asking questions.

Q. You recently wrote articles for the upcoming Spring 2024 edition of NightWalkers, the Foundation’s quarterly magazine. How has writing for the magazine magnified your understanding of the adversities the RLS community faces?

A. It has been such an incredible learning opportunity to write for NightWalkers. My focus has been exploring the intricate relationship between iron and RLS, a topic that has led me to delve deep into scientific literature and conduct insightful interviews, particularly with experts like James Connor, PhD, MS. Through these interviews and research for my articles, I’ve gained a comprehensive understanding of the scientific underpinnings of RLS, particularly regarding its connection to iron deficiency. By synthesizing information from various studies and expert opinions, I’ve uncovered the complexities of how iron levels impact RLS symptoms and the potential mechanisms at play. In my research, I discovered how hard it is to find easily accessible, accurate and concise information outside of the Foundation materials. Even after finding the materials, some studies are exceedingly complex, so it requires a lot of scientific background to understand what is happening.

Interviewing Dr. Connor has provided invaluable insights into the latest research findings and treatment approaches related to iron deficiency and RLS. This has broadened my understanding of the subject matter and equipped me with the knowledge to effectively communicate these concepts to NightWalkers readers.

Q. What have you learned about RLS and why do you feel it is important to increase awareness of the disease?

A. I’ve noticed how RLS is often misunderstood or misdiagnosed, leading to delays in receiving appropriate treatment. Many individuals with RLS may suffer silently, unaware that their symptoms are indicative of a medical condition that can be managed with proper intervention. Oftentimes, physicians aren’t familiar with RLS, and that’s why resources like the Foundation’s network of RLS Quality Care Centers are so important. I think that raising awareness of RLS is essential to ensure timely diagnosis, enhance support for affected individuals, and promote advancements in research and treatment.

Q. You aspire to have a career in the medical field. How will you employ your newfound knowledge of RLS in the future?

A. As a future healthcare professional interested in pursuing neurology, I hope to integrate my understanding of RLS into my approach to patient care. By recognizing the symptoms and implications of RLS, I can effectively assess and address the needs of individuals affected by this condition. Additionally, this internship has introduced me to the importance of medical advocacy and the need for more funding and research. I hope to contribute to advancements in RLS diagnosis and treatment by advocating for improved access to resources and research funding.

The American Academy of Sleep Medicine Invites Public Comment

The American Academy of Sleep Medicine (AASM) is inviting public comment through April 9th on the newly drafted clinical practice guidelines and systematic review of the Treatment of Restless Legs Syndrome and Periodic Limb Movement Disorder. These new guidelines will synthesize the RLS treatment therapies that are now recommended for adult and pediatric populations, updating the previous 2012 AASM RLS guidelines. In these guidelines, treatments were scored as either “strong” or “conditional” (strongly for, strongly against, etc.) The systematic review provides further insight and research data to support the accompanying guidelines. A video overview highlighting the signifcant changes is also available.

Interested members of the public are encouraged to provide feedback on the drafted guidelines to the AASM. From healthcare professionals to advocacy groups to RLS patients and caregivers – all can provide important comments. Varying evidence has value, including both clinical experience and published articles. Public participation ensures that the guidelines meet the needs of the medical and RLS patient communities. Responses should include questions and perspectives that are appropriate, respectful and relevant to the subject.

Comments can be made Tuesday, March 12th through Tuesday, April 9th. To submit comments, complete the disclosure form and email it alongside your comments and questions to ukazmi@aasm.org.

Revisions to the draft guideline and systematic review are at the discretion of the task force, but all submitted comments will be considered and responses internally documented before the guidelines are submitted to the AASM Board of Directors for approval for publication in the Journal of Clinical Sleep Medicine.

Disclaimer: The recommendations in the clinical practice guideline manuscript are in draft form and are still subject to substantive changes by the time they are published in final form. They should not be copied, disseminated, or implemented until final publication.

Helpful Abbreviations

• AASM: American Academy of Sleep Medicine
• CPG: Clinical practice guidelines
• CST: Clinical significance threshold
• IRLSSG: International Restless Legs Syndrome Study Group
• PICO: Patient, Intervention, Comparison, and Outcomes questions
• PLMD: Periodic limb movement disorder
• QOL: Quality of life
• GRADE: Grading of Recommendations Assessment, Development and Evaluation methodology
• RCT: Randomized controlled trial
• SR: Systematic review
• TF: Task force
• WASO: Wake after sleep onset

Translation from Generic Brand Name to Common Brand Names

• Bupropion: Wellbutrin
• Cabergoline: Dostinex
• Carbamazepine: Tegretol
• Clonazepam: Klonopin
• Dipyridamole: Persantin
• Ferric carboxymaltose: Injectafer
• Ferrous sulfate: various iron brand names
• Gabapentin enacarbil: Horizant
• Gabapentin: Neurontin; Gralise
• Levodopa: Sinemet
• Low-molecular-weight iron dextran: INFeD
• Oxycodone: Oxycontin
• Pramipexole: Mirapex
• Pregabalin: Lyrica
• Transdermal rotigotine: Neupro patch
• Valproic acid: Depakote

Dopamine Medications and Impulse Control Disorders

Dopaminergic medications (such as carbidopa/ levodopa, pramipexole, ropinirole and rotigotine) are frequently prescribed to treat RLS. Doctors often – though not universally – warn patients receiving the drugs that they may cause a dramatic worsening of RLS symptoms over time, an effect known as augmentation. However, few physicians and patients are aware of another serious side effect of these drugs: impulse control disorders (ICDs). Studies found 6-17% of patients on dopaminergic medications may be affected. Anyone taking these drugs needs to be aware of the potential for such effects and be proactive in educating their providers if side effects develop. As a moderator for the RLS Foundation’s Discussion Board forum, I often see this brought up in conversations, and I would like to bring awareness to it here.

ICDs show themselves as behaviors that are disturbing and out of the patient’s former patterns. They could emerge as compulsive gambling, compulsive eating, compulsive shopping, hypersexuality or punding (compulsive, repetitive behaviors). Oddly, the patient may not be aware of these new, harmful behaviors. Most ICDs are behaviors that, left unchecked, can destroy financial savings, break up families, cause excessive weight gain or destroy careers. These are serious situations that need to be identified and dealt with promptly. Family members and friends need to be alert and assertive in calling attention to these often-destructive behaviors and ensuring that they are taken seriously by both the sufferer and the medical professional.

ICD-induced compulsive gambling doesn’t refer to friendly, low-stakes, weekly poker games; light-hearted card games with friends; or occasional trips to a casino, assuming those were activities a person enjoyed before starting on the medication. Instead, it is a powerful need to take excessive and frequent financial risks for a perceived immediate gain, whether at the casino, at the horseracing track, or on day trading stocks.

Compulsive eating is another kind of ICD. Raiding the refrigerator day and night can be an indication of compulsion that may lead to rapid weight gain. To be sure, these medications can cause weight gain on their own, but compulsion needs to be ruled out if the patient eats compulsively.

Compulsive shopping does not include your daily essential purchases or even the occasional retail therapy. Compulsive shopping is an unrestrained need to buy unnecessary, sometimes unwanted, items. It is shopping purely to satisfy the desire to buy something – anything.

Hypersexuality is not simply defined as an increase in libido. It is an uncontrolled drive to participate in high-risk sexual activities that often do not include one’s typical partner. This compulsion presents an obvious risk to familial and friend relationships.

Punding is engaging in a repetitive action, such as compulsively assembling and disassembling something over and over again. Assembling a jigsaw puzzle several times in a row only becomes punding when it becomes an uncontrollable urge to work the puzzle again and again. Punding does not carry some of the dangers of the other ICDs, but it is still cause for concern and a reason to consider another medication to treat your RLS.

The one commonality that ICDs have is that the activity, though it may be of high risk and of high consequence, brings pleasure to the individual when they engage in it. The activity stimulates the dopamine pleasure center of the brain. When the patient becomes addicted to this form of stimulation and needs to fulfill the compulsion repeatedly, there can be serious long-term consequences.

As an additional danger, some studies suggest that patients with ICDs are more likely to develop an additional complication, dopamine agonist withdrawal syndrome (DAWS), a long-term condition that can cause severe depression, anxiety and other psychological symptoms that often do not respond to treatment.

Once an ICD is identified and the offending medication is discontinued or even if the dose is significantly decreased, an individual will cease all compulsive behaviors. There is no other effective treatment for the compulsive behavior. Familial support and perhaps even professional therapy may be required in some cases to repair damage to relationships that ICD-induced behavior may have caused.

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.