2018 Local Congressional Meetings Advocacy Update & Issue Review

Transcription

1 Local Congressional Meetings Adocacy Update & Isse Reiew April 16 th Presented By: Dane Christiansen, HMCW

2 Washington Update Adocacy Progress FY /FY 2019 Bdget and Appropriations Health Coerage and Access Opioid Therapy Policies

3 Fiscal Year Sccesses Increase fnding for the research portfolio at NIH RLS DC Agency Visits NHLBI NINDS FDA Inclsion in research actiities at the Department of Defense Positie feedback on RLS patient protection reqests

4 The Sqeaky Wheel Sleep Research Sleep Disorders Research $230 million in FY 2013 $330 million in FY Nobel Prize in Medicine $3 million for narcolepsy $6 million for restless legs syndrome $1 million for Klein Lein syndrome

5 The Sqeaky Wheel Crrent NIH Research Portfolio (in millions) Atism (232) Breast Cancer (656) Sleep (315) Dystonia (16) RLS (6)

6 Contemporary Legislatie Isses Research Fnding Health Coerage and Access FY, $3 Billion increase for NIH For Pillars of Patient Protection Maintained FY 2019, additional $2 billion increase for NIH FY, $330 Million for Peer- Reiewed Medical Research Program Sleep Disorders inclded as a condition eligible for stdy Indiidal Mandate repealed Focs on Indiidal Market stabilization Short-Term, Limited Dration Insrance Plans (STLDPs)

7 Opioid Legislation Introdced U.S. Senate Combatting the Opioid Epidemic Act (S. 2004) This Congress Hose of Representaties Empowering Pharmacists in the Fight Against Opioid Abse Act (H.R. 4275) Opioid Qota Act (S. 1882) Protecting Americans from Dangeros Opioids Act (S. 1079) Opioid Addiction Preention Act (S. 892) DEA Opioid Enforcement Restoration Act (H.R. 4095) Opioid Immediate Sspension Order Act (H.R. 4073) Opioid PACE Act (H.R. 2063) CARA 2.0 Act of (S. 2456) 59+ Total 35+ Total

8 Statement of Principles Abot one in thirty-three Americans hae a chronic n-abating, moderate-to-seere form of RLS that, if left ntreated, will case nthinkable deastation of their lies. This disease is a nerologically-based sleep disorder and therefore management shold not fall nder the exclsie priew of Pain-management specialist when opioids are part of treatment The nderlying neropathology in RLS is qite different from that associated with chronic pain. Therefore, long-term otcomes for opioid se in RLS shold not be extrapolated from their se in chronic pain. The total daily dose of opiates commonly sed to treat RLS are often lower than that se in managing chronic pain and therefore the risk of tolerance and dependency may be less. RLS patients and their physicians need assrance that reglations designed to crb abse of opiates do not inadertently penalize patients sffering from a serios disease who hae exhasted other treatments. Reglations whose effect is to limit refills, reqire freqent doctor isits or co-payments or erect other barriers that can hae a deastating effect on RLS patients with no conterailing pblic health or safety benefit. Any legislation, policy, or reglation mst take into accont the specific needs of RLS patients and not paint them with the same broad brsh as other commnities tilizing (and often strggling with) opioid treatments.

9 Contemporary Isse Reiew Increase fnding for medical research Contine to inclde sleep disorders in the PRMRP Spport a legislatie care-ot for RLS patients and low-total daily dose opioids

10 What Adocates Do Edcate their Senators and Representatie abot the condition and their personal experience Use their story to raise awareness Ask for specific actions on key isses at the proper time Work together with others to create a grassroots network and a critical mass of spport on Capitol Hill

11 Why Adocacy? Us Congress Make Laws/Policy Federal Agencies Oersight of Agencies Power of the Prse Legislators Work for Yo Member-Drien Process At the Table or on the Men

12 Making an Effectie Local Visit Hose.go Senate.go

13 Making an Effectie Local Visit Ahead of the Meeting At the Meeting Connect with the Fondation for briefing and leae-behind materials Introdce yorself and make a local connection (make sre eeryone speaks) Connect with other adocates in yor area Connect with the local office(s) to identify a meeting time and location Familiarize yorself with the isses, backgrond, and asks Explain abot the Fondation and the condition (assme they know nothing) Tell yor story Introdce the asks Leae behind the materials Thank them for their time and exchange contact information

14 Making an Effectie Local Visit After the Meeting Jst remember Proide the Fondation with any critical information or qestions the staff may hae asked (jst tell them yo will find ot and follow p) We are here to help at eery step in the process; jst ask! Bring a camera and hae fn with yor meeting Use their contact information to send them a brief thank yo with the electronic copy of the Mayo Clinic stdy Consider this a relationship bilding actiity and plan to follow p with the office moing forward

15 Congressional Calendar Hose Back home: April 30 May 4 May 28 Jne 4 Jne 29 Jly 9 Jly 30 September 3 Senate Back home: March 26 April 6 April 30 May 4 May 28 Jne 1 Jly 2 6 Agst 6 September 3

16 Key Research Fnding Messages for Policymakers Congressional Ask Please proide NIH with at least $39 billion for FY 2019 Backgrond NIH is the world s foremost organization spporting biomedical research RLS is a growing research portfolio Cres called for $2 billion per year moing forward NIH is crrently fnded at $37 billion Thank yo for proiding NIH with $3 billion for FY More fnding for NIH oerall = more fnding for RLS research Please contine to inclde sleep disorders in the PRMRP

17 Key Opioid Access Messages for Policymakers Many federal, state, and priate health coerage policies affecting the practice of pain management reqire that patients: Are tried on other recognized chronic-pain management treatment before starting opioids. Secre an opioid prescription throgh certified pain management professionals. Hae their medications redced oer time (or proided in minimal qantities). Generally, limit access to opioids. While alid for chronic pain treatment, these policies are not appropriate for ealating the se of opioids to treat RLS. RLS is not related to chronic pain. RLS is a nerological disease impacting sleep and shold be managed by a nerologist or sleep disorders specialist. Moderate to seere RLS is almost always a life-long disease. When opioids are indicated to treat RLS, the condition specifically reqires that opioid medications are not redced oer time. Please work with yor colleages in Congress to ensre that RLS patients retain access to physician-directed care and treatment.

18 Leae Behind Materials Commnity Legislatie Agenda Statement of Principles Docment on Opioid Access Policy Scientific Literatre on Proper RLS Treatment Fondation letter on the DoD PRMRP reqesting sleep disorders inclsion for FY 2019 Fondation letter reqesting safe harbor for RLS patients

19 Qestion and Answer Dane Christiansen Peter Herzog For more information abot pcoming webinars and programs isit