August Recess 2015

Training

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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

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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

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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

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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

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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

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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

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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

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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.

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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.

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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

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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

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Visit Script

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• 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.

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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!

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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