January 4, 2019

Contact the Department of Health and Human Services and ask them to maintain access to low total daily doses of opioid therapies for RLS patients

As the nation moves to address the nationwide opioid crisis, many people with severe RLS are finding it difficult to access opioid medications to treat their symptoms. Your help is needed by March 25 to ensure this vital treatment option continues to be available to RLS patients.

Decision-makers at the US Department of Health and Human Services (HHS) are requesting comments from patients who use opioid therapies to manage their chronic conditions. Agency officials want to hear from RLS patients on how they manage their condition, and barriers that are affecting their access to treatment.

Background

On Dec. 18, 2018, the Pain Management Best Practices Inter-Agency Task Force issued a draft report on “Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.” This Task Force was established to provide guidance on policy for the use of opioid therapies to treat pain and other chronic conditions. HHS is overseeing this effort with the Department of Veterans Affairs and the Department of Defense.

RLS Foundation leaders met with the chair of the Task Force, Dr. Vanila Singh, earlier in 2018. Dr. Singh is the chief medical officer at the HHS Office of the Assistant Secretary for Health and has been overseeing a major portion of the federal government’s response to the opioid abuse crisis. She confirmed that RLS patients will need to comment on the Task Force’s draft report, so that the use of low total daily doses of opioids to treat severe RLS is incorporated when the recommendations are finalized later this year.

RLS is not a chronic pain condition; its underlying mechanisms and neuropathology are very different. It is vital for the RLS community to take part in this effort, however, because the perspectives shared will inform the Task Force’s guidance on regulations that will affect RLS patients who take low total daily doses of opioid medications to manage their condition.

HHS is requesting written feedback from the public on the draft report. The public will have 90 days to comment. Once the comment period ends, the Task Force will consider comments received and compile a Final Report with its proposed updates and recommendations.

Please submit your comments before March 25, 2019. RLS patients and caregivers must make their voices heard at this critical stage in the policy making process!

Take action: Submit your comments

Step #1: Go to the HHS online portal for submitting electronic comments and click on “Comment Now” at the right of the page.

Step #2: Tell the Task Force about RLS, how you manage your symptoms, and what kind of barriers have affected your access to treatment.

You can use the suggested discussion topics below to inform your comments. Feel free to answer the questions directly or simply review them to help guide your response:

• How long have you had RLS, and what were the steps you took to get diagnosed?
• How would you describe your RLS symptoms? (Characteristics could include location, intensity, duration, constancy or intermittency, triggers etc.)
• Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your RLS? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)
• How has your RLS changed over time? (Considerations include augmentation and the severity and frequency of symptoms.)
• What are you currently doing to help treat your RLS? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies.)
• How has your treatment regimen changed over time, and why? (Examples may include change in your condition, change in dose, or treatment side effects.)
• How well does your current treatment regimen manage your RLS?
• What challenges or barriers to accessing or using medical treatments, including low total daily doses of opioids, have you or do you encounter or are you concerned about?

If you have any questions about submitting comments, please contact Peter Herzog at herzog@hmcw.org or (202) 544-7499.

Electronic comments must be submitted on or before March 25, 2019.

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

Step #3:If you wish to let us know that you completed Step #1 and #2 click here, your information will remain confidential. Thank you for participating in this important Action Alert!

Please note that providing your name is optional, and comments may be publicly viewed on regulations.gov. Any personally identifiable information you include in the comment form or an attachment will be provided to the department or agency, and may be publicly disclosed in a docket or on the Internet.

Other Ways to Submit Your Comments

Email written comments to: paintaskforce@hhs.gov

Mail written comments to:

U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health
200 Independence Avenue SW, Room 736E
Attn: Alicia Richmond Scott, Pain Management Task Force Designated Federal Officer
Washington, DC 20201

More information

• Learn more about RLS advocacy and how to take action.
• Learn how to participate in the National Opioid RLS Registry.
• Make a financial gift in support of the RLS Foundation Advocacy Initiative.