2016 August Recess Visits Training Strategy 2: Community, Policy & Legislative Solutions

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1 2016 August Recess Visits Training Strategy 2: Community, Policy & Legislative Solutions 1

2 Presenters Laura Weidner Senior Director, Federal Government Relations Leslie Ritter Senior Director, Federal Government Relations Laura Bennett (LB) Manager, Grassroots 2

3 Learning Objectives Following today s call, you will: Be prepared for August recess meetings Know the meeting focus and legislative asks Understand the status of other federal priority issues Know your point of contact and the process for scheduling meetings 3

4 Agenda Purpose of August recess meetings What August recess meetings are like Focus of meetings Neuro Data Status of other federal priority issues Your point of contact and process for scheduling meetings Pre- and post-meeting tips Q&A 4

5 Purpose of August Recess Meetings Members of Congress are home August 2 September 2 Opportunity to: Reconnect and strengthen relationships with legislators Meet/strengthen relationships with district staff Urge continued focus on MS priorities 5

6 What August Recess Meetings are Like Casual, a conversation With legislator and/or district staff (usually not D.C.-based staff) Share how MS impacts your life and why priority issues are important to you 6

7 Pointers for Meetings Wear orange if you can! If you get asked questions and don t know the answer, that s ok. Society staff will follow up with the office. Take notes during your visits this will help you fill out the online feedback forms. Make note of any personal connections to MS that you learn about and/or followup that needs to be done. Thank them for their time, make sure you have their contact information, and follow up. 7

8 Focus of the Meetings: Neuro Data The Issue The bill would establish a data collection system to track the incidence & prevalence of neurological diseases Why It s Important Last MS prevalence study was done in 1975 Researchers are working at a distinct disadvantage Could help us understand factors like: geographic clusters, variability in racial and ethnic risk, changes in gender radio 8

9 Focus of the Meetings: Neuro Data Impact Since the Public Policy Conference (PPC) & Status 12 added cosponsors since the PPC House passed the bill as part of 21 st Century Cures in July 2015 Senate wants to pass a package of biomedical innovations bills (including neuro data) but remains at an impasse over mandatory funding The Ask Senate: Pass S. 849 House: Thank you for passing H.R. 292 as part of 21 st Century Cures. When the Senate passes S. 849/Innovations, we hope some of the stronger House-passed language can be added back in. 9

10 Priority Issue Update: MS Congressionally Directed Medical Research Program (CDMRP) Funding The Issue Funds important, innovative MS research complementary to that of the National Institutes of Health (NIH) Has funded nearly $40 million of MS research projects since 2009 Why It s Important More investment is needed because an average of less than 15% of applications submitted to the MS CDMRP were able to be funded between Urges focus on critical areas of need like biological basis for disease progression and biomarkers 10

11 Priority Issue Update: MS CDMRP Funding Impact Since PPC & Status 80 Representatives supported $10 M request At least 9 Reps and Sens included MS CDMRP as a priority in their letter to the Appropriations Committees Full House approved $6 M. This continues the 2016 $1 M increase. The Ask Provide $6 M for the MS CDMRP in the final 2017 spending bill 11

12 Priority Issue Update: National Institutes of Health (NIH) Funding The Issue Country s premier institution for medical research In 2016, the NIH received $32.1 B Why It s Important Since 2012, NIH spending on MS-related research has decreased by more than $20 M NIH-funded research has helped make significant progress in understanding MS lesions and how the immune system responds to different stimuli, as well as provided the basic research to develop MS therapies 12

13 Priority Issue Update: NIH Funding Impact Since PPC & Status 200 Representatives and 56 Senators supported $34.5 B request Senate Appropriations Committee approved a $2 B increase total of $34.1 B House Appropriations Subcommittee approved $33.3 B The Ask Provide at least $34.1 B for the NIH in the final 2017 spending bill 13

14 Priority Issue Update: Access to MS Medications The Issue Cost and insurance barriers are negatively impacting people with MS s access to MS medications Both innovation and affordable access are critical to ensure people receive the medication and treatments they need Why It s Important A growing body of evidence indicates that early and ongoing treatment is the best way to modify disease course, prevent accumulation of disability and protect the brain The patient voice and experience are critical perspectives as Capitol Hill looks at access to medications 14

15 Priority Issue Update: Access to MS Medications Impact Since PPC & Status Capitol Hill continues to hold hearings on access to medications, though not MS-specific; has included the patient perspective in one hearing The Society s Advisory Committee to release recommendations later this Summer The Ask No immediate ask; for later August recess meetings, activists may be able to share the Advisory Committee s recommendations 15

16 Point of Contact & Process for Scheduling August Recess Meetings Local Government Relations staff is your primary point of contact and the primary organizer of statewide scheduling so be sure to check with him/her if you do not know who your local Government Relations staff contact is Generally: Local Government Relations staff will schedule Senate meetings District Activist Leaders will schedule their particular district s meeting after coordinating with local Government Relations staff 16

17 Targeting & Once Visits are Scheduled Since our focus is getting Neuro Data through the full Senate and it s already passed the House, all legislators are important. Contact us if you are from a large state and need help narrowing down. All scheduled visits should be entered online: 54&mode=appointment 17

18 Resources August Recess resources will be posted on the: August recess website: and The MS Activist app: To download the MS Activist app, Search for "MS Activist" in your iphone or Android device or download the app at 18

19 Before Your Meetings Get comfortable with the following resources available on the August recess website and the MS Activist App: Members support of priority issues; Members of Congress s profiles (available on the app); Leave behinds (issue summaries); Talking points Links to submit your scheduled visits Links to submit your post-visit feedback Think about why these issues are important to you and tie them to your personal MS story 19

20 Social Media Tweet photos of your visits and tag us and your Representatives officials Twitter/Facebook/Instragram page Issue Hashtags: #MSactivist Neuro Data: #neurodata Funding: #MSresearch, #NIH, #CDMRP 20

21 After Your Meetings Send a thank you (we will post sample thank you language on the August Recess webpage) Think of an event to invite them to! Bike MS, Walk MS, Women on the Move Luncheon, etc. One person per visit should submit an online form about how their visit went: Note any personal connections to MS Note any follow up that needs to be done by the Public Policy Office 21

22 Questions? 22

23 Contacts Northeast PA, NJ, DE, DC, MD and Northern Virginia Southeast South Central Midwest West Federal Issue Questions and 23