Legislative and Policy Priorities

Medical Research

  • Please provide the National Institutes of Health (NIH) with at least $41.6 billion in fiscal year (FY) 2020, a $2.5 billion funding increase. Important research on RLS is funded across NIH Institutes and Centers, including the National Institute of Neurological Disorders and Stroke (NINDS), the National Heart, Lung, and Blood Institute (NHLBI), the National Institute on Drug Abuse (NIDA), and the National Institute of Mental Health (NIMH). Sustained funding commitments are needed to identify better treatments and a cure for this devastating disorder.
  • Please continue to include “sleep disorders” in the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2020. RLS is a major sleep disorder that affects an estimated 40,000 active duty military personnel and readiness.

Patient Access to Appropriate Treatments

  • Please accommodate the needs of patients who rely on the regular use of low-total daily doses of opioids to manage their RLS. As you consider new legislation and work with federal agencies to address the opioid epidemic, please support a diagnosis-appropriate safe harbor for RLS patients, so they do not face arbitrary barriers. RLS patients need for their physicians to be able to prescribe opioids appropriately and without undue restriction.

Education and Awareness

  • Please provide $5 million for the National Neurological Conditions Surveillance System (NNCSS) for FY 2020. The NNCSS at the Centers for Chronic Disease Control and Prevention (CDC) collects and synthesizes data to help increase our understanding of neurological disorders and to support further neurologic research. RLS remains a severely misunderstood and underdiagnosed neurological disorder, and increased surveillance is vital to improving patient outcomes.
  • Please provide at least $250,000 in line-item funding for sleep and sleep disorders public health activities at the CDC’s Center for Chronic Disease Prevention and Health Promotion. With the cessation of the National Healthy Sleep Awareness Project (NHSAP), CDC presently has no active public health activities dedicated to sleep or sleep disorders, despite the fact that sleep affects nearly every body system and many chronic diseases. Please allow the valuable scientific and public health efforts started during the NHSAP to continue.

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