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August Recess 2015
Training
• Call is being recorded
• All lines have been muted
• Please call into the meeting using the GoToMeeting call in
number, Access Code, and Audio Pin (Audio Pin is unique
for each attendee)
• You can ask questions through the question box
• We will unmute lines for questions – if you have a
question please click on the “raise your hand button”
• If you are having technical challenges with GoToWebinar,
please call the helpdesk at 1-877-346-6748
• The PowerPoint, call summary and call recording will be
distributed
2
Welcome to the August Recess Prep Call!
• Update on Society’s 2015 Federal Priority Issues
– Neuro Data/21st Century Cures
– Complex Rehab Technology Bill
– Funding Issues/Spending Caps
• What August Recess Visits are Like
– Format of the Visits
– Pointers
• Social Media
• When You Get Home
• Q&A
3
Call Agenda
Improved Policies for
People Affected by
MS
Relationships with Key
Stakeholders
Stories of People
Affected by MS
Data to Show the Policy’s
Impact
4
Your Stories & Relationships are Key
to Successful Activism
2015 Federal Priorities
Funding Issues/Spending
Caps
Complex Rehabilitation
Technology
Neuro Data/21st Century Cures
Neurological Data
6
Request Cosponsor and pass the Advancing Research for Neurological Diseases Act (H.R. 292/S. 849). • Senate: If your member is on HELP, request the
committee include S.849 in the Innovation bill. • House: Thank members who supported 21st Century
Cures. Request members not on H.R. 292 to join that bill as well.
Issue • Bill would create a data collection system at the Centers for Disease Control, pooling existing data.
Status • House included H.R. 292 in larger 21st Century Cures Act—PASSED!
• Uptick in Senate cosponsorship and in discussion with HELP committee
7
2 Track Approach for H.R. 292
Introduce Standalone Bill
Move Bill Through
House and Senate
Committees
House Vote Senate Votes President Signature
Included In H.R. 6
Move through House
Committee
House Vote
Included in Senate
Companion to H.R. 6
Senate Passage
President Signature
Track One
Track Two
8
Society and MS Activists’ Leadership
Demonstrated in Multiple Outlets
Research Idea generation for initial draft
Review of legislative language
Participation in Hill meetings
Public Policy Participation in in-district forums to generate ideas
Nearly 400 in person visits in March
Over 6,000 emails sent to legislators
Activist participation in Member press conference
Communication 3 OpEd placements
2 blog posts on Society’s national blog
Activist Quotes in Member’s Press Releases
Engaged in twitter campaign
9
What’s Next? 21st Century Cures Act
Moving Through Congress with HR 292
Listening tour Draft bill Mark-up House Vote Senate
Considers President Signature
House passed bill by a vote of 344-77 Release of Senate bill unknown
• Remnants of Budget Control Act of 2011
– Created sequestration and budget caps
– Deal Struck: Until 2016, sequestration has been avoided—still budget caps.
– Republicans want to increase defense budget and Democrats want to increase discretionary budget.
• Unclear path forward, likely possibilities include:
– Government Shutdown
– Continuing Resolution
– Agreement on a way to increase caps
New Ask: Pass a deal to increase spending caps and finish appropriations cycle
10
Politics May Interfere with
Appropriations
MS Research Funding:
National Institutes of Health (NIH)
Request Raise the funding caps and fund the NIH at least at $32 billion in FY 2016.
Issue • NIH is the country’s premier institution for medical research and single largest source of biomedical funding in the world.
• Approximately $102 million of FY 2014 NIH appropriated funding was directed to MS-related research.
Status • House Health subcommittee in Appropriations voted to increase NIH funding to $31.2 billion in FY 2016. Defunds other agencies.
• Senate Health subcommittee increased NIH funding by $32 billion in FY 2016. Defunds other agencies.
• 21st Century Cures Act $31.8 billion in FY2016.
MS Research Funding: MS Congressionally
Directed Medical Research Program
Request Raise the funding caps and provide $10 million for MS CDMRP in FY 2016
Issue • CDMRP is a peer-reviewed program funding novel research. • Funded every year via Defense Appropriations Act.
Status • House passed Department of Defense bill with $6 million for MS CDMRP.
• Amendment proposed but withdrawn that would have stripped many CDMRPs of funding.
• Senate bill has made it out of the appropriations committee --no specific line item for MS. Bill will likely not get a vote.
13
Complex Rehabilitation Technology
Request All Members: Cosponsor the Ensuring Access to Quality Rehabilitation Technology Act (H.R. 1516/S. 1013) If your member is on Senate Finance or House Ways and Means: Include the bill in the Committee’s next mark up.
Issue • CRT = medically necessary products that are individually configured to meet a person’s needs
• Includes manual and power wheelchairs and seating and positioning systems
• Bill would create a separate recognition for CRT
Status • House reintroduced in late March and have 128 cosponsors
• Senate reintroduced in April and have 12 cosponsors
• Increase Education: July 20th Expo on the Hill to
showcase complex chairs and their advantages.
– Goal: Additional understanding of the issue will increase
likelihood committee will move the bill
– Next step: Committee “mark-up”, where they provide edits
to the original bill and vote on moving it.
14
Complex Rehab: What’s Next?
**Reminder: Check if your Members are on Senate
Finance or House Ways and Means. If they are, ask them
to prioritize this bill and move it out of committee!**
What an August Recess Visit is Like
• The atmosphere is casual, a conversation
• With the member of Congress and/or a staffer
• Don’t worry about getting too deep into policy – you
are not expected to be an expert
• Your role: TO TELL YOUR STORY
15
Scheduling the Meetings
• Each District Activist Leaders is scheduling a visit
with his/her U.S. Representative
• Chapter advocacy staff are coordinating the Senate
visits and will communicate the overall schedule
• One person per visit scheduled, please enter it into
our online system:
http://ssl.capwiz.com/nmss/lrm/feedback.tt?event=47
754&mode=appointment
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http://ssl.capwiz.com/nmss/lrm/feedback.tt?event=47754&mode=appointmenthttp://ssl.capwiz.com/nmss/lrm/feedback.tt?event=47754&mode=appointment
What to Talk About During Your Visit
• We provide you with a script per issue—these are called
Talking Points.
• Talking points will be posted soon so that you can get
comfortable with them.
• You can keep the talking points in front of you during
your visits.
• Hook – Line – Sinker format
17
Visit Script
18
• Start w/ your request
• Paint the picture: What is MS?; How has MS impacted you and your family?
• What are the stakes?
Hook
• The issue (neuro data, complex rehab, or funding/spending caps)
• Why does the issue matter to you as someone living with or affected by MS?
Line
• Also end with the REQUEST: What do we want the member of Congress to do?
• Benefits of the request Sinker
Visit Pointers
• 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 follow-up that needs to be done.
• Be sure to thank them for their time, make sure you have their contact information, and follow up.
19
Social Media
Follow @MSactivist
• Tweet photos of your visits and tag us
Issue Hashtags:
• #MSactivist
• Neuro Data: #cures2015, #neurodata, and #MS
• Complex Rehab: #complexrehab and #access2CRT
• Funding/Spending Caps: #MSresearch, #NIH,
#CDMRP, and/or #cutshurt
When You Get Home
• Send a thank you
• One person per visit should submit an online form about
how their visit went:
http://ssl.capwiz.com/nmss/lrm/feedback.tt?event=47754
– Note any personal connections to MS
– Note any follow up that needs to be done by the Public Policy
Office
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http://ssl.capwiz.com/nmss/lrm/feedback.tt?event=47754
1. Take a look at the August recess website
2. Find out if your Member of Congress has co-sponsored/supported any of our priority issues
3. Determine if they are on a key committee – Senate HELP: Include neuro data bill in Innovation
Initiative
– Senate Finance: Move complex rehab bill out of committee
– House Ways and Means: Move complex rehab bill out of committee
4. Develop Story
5. Break out the orange!
22
Action Items Before Visit
Wrap-up For updates and resources: www.nationalmssociety.org/augustrecess
• Talking points
• Leavebehinds
• Co-sponsorship list
• Voting record for 21st Century Cures Act
• Story telling guide
• Social media guides
Questions?
http://www.nationalmssociety.org/augustrecess