April 21, 2020

Speaking Out During “Stay at Home” Orders

COVID-19 may keep us apart, but we can all stand together to let Congress know that nearly 12 million Americans live with RLS and we must be heard. Our original plans for RLS advocates to travel to Washington, DC for “RLS Hill Day” have changed due to “stay at home” orders.

This unique situation provides each of us in the RLS community the opportunity to participate in this day of virtual advocacy by calling or emailing our representatives to educate them about RLS and to ask for their support in specific policies and legislation. We’re calling it Virtual RLS Advocacy Day and we are looking for anyone with RLS, and anyone who loves and cares for someone with RLS, to join in this campaign on Friday, April 24th, to let lawmakers know what the RLS community needs in order to manage this misunderstood disease.

What Makes this Day Different?

The RLS Foundation has partnered with the Health and Medicine Counsel of Washington (HMCW) for over three years to coordinate and direct our advocacy efforts. Working together, we have coordinated multiple trips to Washington DC to meet with key legislators in person to discuss our concerns and ask for their support in specific legislation and policy. What we have learned is that your representative wants to hear YOUR story. You can make a difference. You, the constituent, must reach out to your representatives with your personal RLS story and let them know how they can effect change in your life with our priority legislation.

What are the Priorities

We have narrowed down our requests to the following four areas currently under consideration in Congress. We all need to ask our representatives to support these initiatives on our behalf:

• Increase funding at the National Institutes of Health—$44.7 billion in the FY 2021 Labor-HHS-Education Appropriations bill to fund critical research to find treatments and a cure for RLS.
• Continue to include “sleep disorders” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) in the FY 2021 Defense Appropriations Bill.
• Protect the needs of RLS patients who depend on appropriate access to low-total daily dose opioid therapy to manage the most severe forms of the disease when all other treatment options have proved ineffective. Ensure that RLS patients retain access to physician-directed care and treatment using opioids in any legislation, policy or regulations.
• Support provider education to minimize misdiagnosis and incorrect treatment of this misunderstood disease. The CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) supports several programs that work to increase public awareness and improve professional education. Please provide $5 million for the National Neurological Conditions Surveillance System (NNCSS) and $5 million for a Chronic Diseases Education and Awareness Program.

Why Contact your Representatives?

Hearing from constituents can make a powerful difference in how legislators view and vote on issues. Making a phone call or sending an email allows you to tell your RLS story. When you explain how RLS affects your everyday life—impacts your job, curbs your ability to travel, makes it impossible to get a full night’s sleep—you put a face on this misunderstood disease and gain support from our lawmakers.

How YOU Can Make a Difference

We want this to be as easy as possible for everyone to join us on this first Virtual RLS Advocacy Day on Friday, April 24. We have gathered all the information you need to make phone calls or send emails, or both!

• Before Friday, download the Prep packet from the Advocacy page on our website (www.rls.org). There you will find instructions on how to contact your members of Congress. We have provided an email template and a call script – you simply add your personal RLS story.
• Watch the recorded webinar “How to Prepare: Virtual RLS Advocacy Day” or download the webinar slides to find out what you need to know before you make your calls or send emails.
• Read the RLS Foundation’s legislative priorities if you want more details on each issue.
• If you prefer to make phone calls, you will likely be directed to the staffer that handles health issues (Health Legislative Assistant or HLA). We have a partial list of the HLAs in the Prep packet. Check to see if your member of Congress is listed for their phone number and HLA.
• Finally, after you have completed your calls or emails, please let us know who you contacted and if they requested additional information so that the Foundation can follow up with this request. It helps to know which members of Congress have been contacted to determine the effectiveness of this campaign and to identify potential RLS champions in Congress. Complete this short survey after your contacts.
• If you have any questions before or during Virtual RLS Advocacy Day please give us a call at 512.366.9109 or email amber@rls.org.