2019 Advocacy Efforts Pay Off

February 17, 2020 2020 Federal Spending Package Supports RLS Research By Kris Schanilec The RLS Foundation continues to advocate f...

February 17, 2020

2020 Federal Spending Package Supports RLS Research
By Kris Schanilec

The RLS Foundation continues to advocate for the RLS community on Capitol Hill and across federal agencies. 2019 was an active year, and the Foundation was successful in helping to secure recommendations from Congress through the appropriations process.

Notably, the federal funding bill encourages sleep disorders research at the National Institutes of Health (NIH) – and for the first time, specifically lists “restless legs syndrome.” In late December, Congress passed its final bills, and the president signed both to fund the government in fiscal year 2020.

Following are some of the key recommendations and funding that were included in this important legislation.

Medical Research

National Institutes of Health (NIH):

  • Congress appropriated $41.7 billion for the NIH – an increase of $2.6 billion over the 2019 fiscal year. The RLS Foundation worked alongside the broader patient community to ensure that the NIH received a substantial increase in funding to continue vital research that will benefit patients.

  • Congress included the following recommendations:

Sleep and Circadian-Dependent Mechanisms Contributing to Opiate Use Disorder. The funding bill specifically recognizes work by the National Institute on Drug Abuse (NIDA) and the National Institute of Neurological Disorders and Stroke (NINDS) to address the opioid crisis through innovative research directions. The bill notes “the promise that research on sleep and circadian mechanisms can play in the prevention and treatment of opiate use disorder” and encourages relevant NIH institutes and centers to work collaboratively to “continue the exploration of innovative research pathways.”

Sleep Disorders. The bill commends “the recent expansion and advancement of the sleep and circadian research portfolio under the coordination of the National Center on Sleep Disorders Research (NCSDR),” and “encourages dedicated research activities on specific sleep disorders, such as narcolepsy and restless legs syndrome, to ensure scientific progress benefits patients impacted by debilitating conditions disordering their sleep and biological rhythms.”

The fiscal year (FY) 2020 NIH Congressional Justification (a document with detailed estimates and justifications for research activities) also emphasizes that restless legs syndrome research continues to be a promising direction for the NCSDR.

Department of Defense:

  • The Peer-Reviewed Medical Research Program has been funded at $360 million for FY2020, and sleep disorders has been included again as a category eligible for funding.
Professional Education

Centers for Disease Control and Prevention (CDC):

  • Congress budgeted $5 million for the National Neurological Conditions Surveillance System. This initiative aims to expand surveillance of neurological conditions, providing data to increase the understanding of these disorders and to further support neurological research. The system will initially focus on multiple sclerosis and Parkinson’s disease, with the goal to eventually expand surveillance of many neurological conditions.

Department of Veteran’s Affairs:

  • Sleep Disorders. The Department of Veteran’s Affairs was previously directed by Congress to assign a program manager for sleep disorders. The new funding bill requires that the Department provide an update to Congress by June 30, 2020. This is an important first step in improving coordination of sleep disorders research across federal agencies and in broader activities.

None of this progress would be possible without the many RLS patients and others across the country who have connected with their legislators locally and in Washington to share their personal stories.

While the RLS community has accomplished much, more needs to be done. In 2020, Congress will continue to take legislative action on funding the government, advancing critical research, and addressing the opioid crisis. The RLS Foundation will continue to advocate for appropriate access to opioid therapy at low total daily doses for RLS patients through targeted outreach to federal agencies and key congressional committees.

The RLS Foundation is looking for individuals to get involved in legislative activities and share their experiences with leaders in Washington. Are you ready to step up? To learn more about RLS advocacy and to view free educational webinars, visit the Advocacy page at www.rls.org or contact the Foundation at info@rls.org.

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