September 12, 2019

A Letter to our RLS Foundation Supporters and the RLS Community

Thank you for your continued advocacy and support. In May, a delegation of RLS Foundation staff, board members and over 20 patients attended the first RLS Advocacy Day on Capitol Hill in Washington, DC. Our team of advocates sat down with staff of more than 45 legislative offices to educate them about RLS, share the personal stories and struggles of many of their constituents, and outline our community’s unique policy considerations. This was our fourth round of meetings in DC since we launched our advocacy initiative in October 2017.

As a direct result of our advocates’ hard work educating their federal representatives, Congress continues to highlight RLS medical research at the National Institutes of Health through report language in annual appropriations bills. Emphasizing the importance of funding in this area will help to move research forward, create new treatment options for patients, and bring us closer to a cure. The Department of Defense also continues to pursue important research activities on sleep disorders. Thanks to our community and others, Congress continued to include sleep disorders as a category eligible for funding in fiscal year (FY) 2019, and we are working to ensure the category is included for FY 2020.

We are also happy to report the impact our advocacy campaign made on the Pain Management Best Practices Inter-Agency Task Force Report. Over 350 RLS patients and advocates submitted comments on the report, and the RLS community’s voice has been heard! Many of our concerns are reflected in the report, including an emphasis on the importance of clinical guidelines that are supported by evidence and created by organizations like the RLS Foundation that are experts in the treatment of certain conditions.

These recommendations underscore the importance of resources such as “The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome” published by members of the RLS Foundation Scientific and Medical Advisory Board. We encourage you to share these guidelines with your healthcare providers to educate them on appropriate treatment practices.

In conjunction with the Task Force’s report, the Centers for Disease Control and Prevention (CDC) has also acknowledged that its 2016 Guideline for Prescribing Opioids for Chronic Pain has been broadly misapplied, which has resulted in a loss of appropriate patient access and significant disruptions of care. The guideline is intended for primary care doctors managing individuals with chronic pain. While RLS is not a chronic pain condition, it’s important to note that the guideline has contributed to a loss of access for many RLS patients who take low total daily doses of opioids to appropriately manage their RLS.

In April, the CDC published a commentary in the New England Journal of Medicine outlining ways in which the guideline has been misapplied. For example, the guideline has been misapplied to unintended groups (such as RLS patients), as well as resulted in sudden discontinuation of opioid therapy – a practice that would be potentially devastating for someone with RLS. The CDC is also working to address these misapplications through improved educational resources for patients and providers.

These outcomes from the Task Force and the CDC are great steps in the right direction, but we need to keep pushing these issues forward. RLS patients across the country are still losing access to opioid therapy as a result of stigma, fear and miseducation.

Thank you again for your tireless advocacy on these issues, and your continued financial support. We will continue to update you on our progress to increase medical research, maintain patient access, and improve education and awareness.

We do this together, as always,

Karla Dzienkowski, RN, BSN	Christopher J. Earley, MB, BCh, PhD, FRCPI
Executive Director, RLS Foundation	Chair, RLS Foundation Scientific and Medical Advisory Board