2018 Local Congressional Meetings Advocacy Update & Issue Review

April 16th

Presented By:

Dane Christiansen, HMCW

2018 Webinar Series

2018 Webinar Series

2018 Webinar Series

Washington Update

Ø Advocacy Progress

Ø FY 2018/FY 2019 Budget and

Appropriations

Ø Health Coverage and Access

Ø Opioid Therapy Policies

2018 Webinar Series

2018 Webinar Series

Fiscal Year 2018 Successes

Ø Increase funding for the research portfolio at NIH

Ø RLS DC Agency Visits

Ø NHLBI

Ø NINDS

Ø FDA

Ø Inclusion in research activities at the Department of Defense

Ø Positive feedback on RLS patient protection requests

2018 Webinar Series

2018 Webinar Series

The Squeaky Wheel…

u Sleep Research

Ø $230 million in FY 2013

Ø $330 million in FY 2017

Ø 2017 Nobel Prize in Medicine

u Sleep Disorders Research

Ø $3 million for narcolepsy

Ø $6 million for restless legs syndrome

Ø $1 million for Klein Levin syndrome

2018 Webinar Series

2018 Webinar Series

The Squeaky Wheel…

0

100

200

300

400

500

600

700

Autism (232) Breast Cancer(656)

Sleep (315) Dystonia (16) RLS (6)

Current NIH Research Portfolio (in millions)

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2018 Webinar Series

Contemporary Legislative Issues

u Research Funding

Ø FY 2018, $3 Billion increase for NIH

Ø FY 2019, additional $2 billion increase for NIH

Ø FY 2018, $330 Million for Peer-Reviewed Medical Research Program

Ø “Sleep Disorders” included as a condition eligible for study

Health Coverage and Access

Ø Four Pillars of Patient Protection Maintained

ØIndividual Mandate repealed

ØFocus on Individual Market stabilization

ØShort-Term, Limited Duration Insurance Plans (STLDPs)

2018 Webinar Series

2018 Webinar Series

Opioid Legislation Introduced This Congress

U.S. Senate v Combatting the Opioid Epidemic Act

(S. 2004)

v Opioid Quota Act (S. 1882)

v Protecting Americans from Dangerous Opioids Act (S. 1079)

v Opioid Addiction Prevention Act (S. 892)

v CARA 2.0 Act of 2018 (S. 2456)

v 35+ Total

House of Representatives v Empowering Pharmacists in the Fight

Against Opioid Abuse Act (H.R. 4275)

v DEA Opioid Enforcement Restoration Act (H.R. 4095)

v Opioid Immediate Suspension Order Act (H.R. 4073)

v Opioid PACE Act (H.R. 2063)

v 59+ Total

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2018 Webinar Series

Statement of Principlesv About one in thirty-three Americans have a chronic un-abating, moderate-to-severe form of RLS

that, if left untreated, will cause unthinkable devastation of their lives.

v This disease is a neurologically-based sleep disorder and therefore management should not fall under the exclusive purview of Pain-management specialist when opioids are part of treatment

v The underlying neuropathology in RLS is quite different from that associated with chronic pain. Therefore, long-term outcomes for opioid use in RLS should not be extrapolated from their use in chronic pain.

v The total daily dose of opiates commonly used to treat RLS are often lower than that use in managing chronic pain and therefore the risk of tolerance and dependency may be less.

v RLS patients and their physicians need assurance that regulations designed to curb abuse of opiates do not inadvertently penalize patients suffering from a serious disease who have exhausted other treatments.

v Regulations whose effect is to limit refills, require frequent doctor visits or co-payments or erect other barriers that can have a devastating effect on RLS patients with no countervailing public health or safety benefit.

v Any legislation, policy, or regulation must take into account the specific needs of RLS patients and not paint them with the same broad brush as other communities utilizing (and often struggling with) opioid treatments.

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2018 Webinar Series

Contemporary Issue Review

Ø Increase funding for medical research

Ø Continue to include “sleep disorders” in the PRMRP

Ø Support a legislative carve-out for RLS patients and low-total daily dose opioids

2018 Webinar Series

2018 Webinar Series

What Advocates Do

v Educate their Senators and Representative about the condition and their personal experience

v Use their story to raise awareness

v Ask for specific actions on key issues at the proper time

v Work together with others to create a grassroots network and a critical mass of support on Capitol Hill

2018 Webinar Series

2018 Webinar Series

Why Advocacy?

Us Congress v Make Laws/Policy

v Oversight of Agencies

v Power of the Purse

v Legislators Work for You

v Member-Driven Process

v At the Table or on the Menu…

Federal Agencies

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2018 Webinar Series

Making an Effective Local Visit

House.gov Senate.gov

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2018 Webinar Series

Making an Effective Local Visit

u Ahead of the Meeting

Ø Connect with the Foundation for briefing and leave-behind materials

Ø Connect with other advocates in your area

Ø Connect with the local office(s) to identify a meeting time and location

Ø Familiarize yourself with the issues, background, and asks

u At the Meeting

Ø Introduce yourself and make a local connection (make sure everyone speaks)

Ø Explain about the Foundation and the condition (assume they know nothing)

Ø Tell your story

Ø Introduce the asks

Ø Leave behind the materials

Ø Thank them for their time and exchange contact information

2018 Webinar Series

2018 Webinar Series

Making an Effective Local Visit

u After the Meeting

Ø Provide the Foundation with any critical information or questions the staff may have asked (just tell them you will find out and follow up)

Ø Use their contact information to send them a brief thank you e-mail with the electronic copy of the Mayo Clinic study

u Just remember

Ø We are here to help at every step in the process; just ask!

Ø Bring a camera and have fun with your meeting

Ø Consider this a relationship building activity and plan to follow up with the office moving forward

2018 Webinar Series

2018 Webinar Series

Congressional Calendar

House

u Back home:

Ø April 30 – May 4

Ø May 28 – June 4

Ø June 29 – July 9

Ø July 30 – September 3

Senate

u Back home:

Ø March 26 – April 6

Ø April 30 – May 4

Ø May 28 – June 1

Ø July 2 – 6

Ø August 6 – September 3

2018 Webinar Series

2018 Webinar Series

Key Research Funding Messages for Policymakers

u Congressional “Ask”Ø Please provide NIH with at least $39

billion for FY 2019

Ø Cures called for $2 billion per year moving forward

Ø Thank you for providing NIH with $3 billion for FY 2018

Ø Please continue to include “sleep disorders” in the PRMRP

Background

Ø NIH is the world’s foremost organization supporting biomedical research

Ø RLS is a growing research portfolio

Ø NIH is currently funded at $37 billion

Ø More funding for NIH overall = more funding for RLS research

2018 Webinar Series

2018 Webinar Series

Key Opioid Access Messages for Policymakers

Many federal, state, and private health coverage policies affecting the practice of pain management require that patients:

v Are tried on other recognized chronic-pain management treatment before starting opioids.

v Secure an opioid prescription through certified pain management professionals.

v Have their medications reduced over time (or provided in minimal quantities).

v Generally, limit access to opioids.

u While valid for chronic pain treatment, these policies are not appropriate for evaluating the use of opioids to treat RLS. RLS is not related to chronic pain. RLS is a neurological disease impacting sleep and should be managed by a neurologist or sleep disorders specialist. Moderate to severe RLS is almost always a life-long disease. When opioids are indicated to treat RLS, the condition specifically requires that opioid medications are not reduced over time. Please work with your colleagues in Congress to ensure that RLS patients retain access to physician-directed care and treatment.

2018 Webinar Series

2018 Webinar Series

Leave Behind Materials

Ø Community Legislative Agenda

Ø Statement of Principles Document on Opioid Access Policy

Ø Scientific Literature on Proper RLS Treatment

Ø Foundation letter on the DoD PRMRP requesting “sleep disorders” inclusion for FY 2019

Ø Foundation letter requesting safe harbor for RLS patients

2018 Webinar Series

2018 Webinar Series

Question and Answer

For more information about upcoming webinars and programs visit www.rls.org.

Dane ChristiansenChristiansen@hmcw.org

Peter HerzogHerzog@hmcw.org