changes in the political environment: what ’ s happening? what does it mean for people with spina...
TRANSCRIPT
Changes in the Political Environment: What’s happening? What does it mean for people with Spina Bifida?
Ilisa Halpern Paul, MPPManaging Government Relations Director
andJeremy Scott
Government Relations DirectorDrinker Biddle & Reath
Has Change Really Come to Washington?
• New Administration
• New Congress
• Renewed focus on health care issues
• Interest group advocacy ramped up
• Budgetary and economic concerns – growing budget deficit
• Renewed interest by some Republican members in “fiscal responsibility”
• More voices, more requests, less money
• Overwhelmed, overworked staffers
• Tired, frustrated, distracted elected officials
Health Care Agenda of the 111th Congress - Already Done
• SCHIP Reauthorization/Expansion – Passed and signed into law
• COBRA Subsidies – Included in the stimulus package
• Comparative Effectiveness Research – Included in the stimulus package
• Health Information Technology – Included in the stimulus package
• FDA Tobacco Regulation – Passed the House and as of June 3rd, pending on the Senate Floor
• Disease-specific authorizations – Some enacted into law (e.g., Christopher and Dana Reeve Paralysis Act), and some have passed the House (e.g., Vision Care for Kids Act)
Health Care Agenda of the 111th Congress – Still to Come
• National Health Reform
• Medicare Physician Fee “Fix” (aka SGR)
• FDA Drug Safety
• Generic Biologics
• Cancer Omnibus Legislation
• Health Disparities
Congressional Overview
• President Barack Obama (D-IL)
• U.S. Senate – 56 Democrats – 2 Independents– 41 Republicans– 1 Pending race - Minnesota
• House of Representatives– 256 Democrats– 178 Republicans – One vacancy
SBA Concerns in Congress: Overview
• Annual appropriations process
• Authorizing legislation (e.g., reauthorization of the Birth Defects and Developmental Disabilities Prevention Act)
• Health care reform – special needs of people with disabilities and chronic conditions
• Comparative effectiveness research
• Tax treatment for charitable contributions
• Folic acid fortification and other FDA related concerns
• Others
SBA FY 2010 Funding Priorities
1. $7 million for the National Spina Bifida Program at the National Center on Birth Defects and Developmental Disabilities, within the Centers for Disease Control and Prevention (CDC).
2. $4.818 million for the CDC’s national folic acid education and promotion efforts to support the prevention of Spina Bifida and other neural tube defects.
3. $25.623 million to strengthen the CDC’s National Birth Defects Prevention Network.
4. $77.059 million for the CDC’s National Center on Birth Defects and Developmental Disabilities.
5. $405 million for the Agency for Healthcare Research and Quality (AHRQ).
6. $33.349 billion for the National Institutes of Health (NIH) to support biomedical research.
NIH Funding
0
5
10
15
20
25
30
35
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Dolla
rs in
Billio
ns
NIH Funding
NIH SB Budget - Revised Method
02
468
1012
1416
2005 2006 2007 2008
Dol
lars
in M
illio
ns
NIH SB Budget
CDC Budget Summary Before Rescission
0
1
2
3
4
5
6
7
1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Fiscal Year
Do
lla
rs i
n B
illi
on
s
CDC SB Funding
Centers for Disease Control and Prevention (CDC) National Spina Bifida Program
(amount in the thousands)
5,100
3,6573,000
2,000
5,100 5,198 5,468
0
1,000
2,000
3,000
4,000
5,000
6,000
FY 2003Enacted
FY 2004Enacted
FY 2005Enacted
FY 2006Enacted
FY 2007Enacted
FY 2008Enacted
FY 2009Enacted
Overview of NIH and CDC Budget Numbers
• $261 billion spent on NIH research from 1998-2008.
• $50 million spent on Spina Bifida research at the NIH from 2005-2008.
• $10.4 billion in the stimulus package for biomedical research at NIH.
• $31.57 billion spent at CDC from 1997-2005.
• $29.5 million spent on Spina Bifida research at CDC from 2002-2008.
Other SBA Policy Priorities and Concerns
• Access to care for people with mobility concerns/challenges – remembering Debbie Blanchard
• Comparative effectiveness – how will its use impact Spina Bifida? Can the Spina Bifida registry contribute to this effort?
• Health Information Technology – how can it improve the lives of people with Spina Bifida?
• Disease specific authorizations/reauthorization – reauthorizing the Birth Defects and Developmental Disabilities Prevention Act
• Out of pocket expenses/life-time caps – safeguarding people with disabilities and chronic conditions
• Others
Tax Deductions for Charitable Gifts
• President Obama has proposed that the tax deduction for those with annual incomes of more than $250,000 - which is now 35 cents for each dollar donated - would be limited to 28 percent, returning the rate to where it was during the Reagan Administration.
• Sources do not agree to what extent this change will affect total charitable giving:
– President Obama argues that the change would not have an adverse effect on giving.
– Organizations, such as the Center on Budget and Policy Priorities and the Center on Philanthropy at Indiana University, predict a decrease in overall giving between 1.3 and 2.1%, or up to $4.1 billion.
– The Independent Sector, a nonprofit coalition of charities, estimates the potential decrease in giving as up to $7 billion.
Advocacy Strategic Plan – Check-In
• Influence the FDA to re-evaluate the current level of folic acid food enrichment and include corn-based products (depends on FDA leadership and responsiveness to Congressional pressure)
• Educate Congress about the vital importance of increased Spina Bifida research and influence them to act favorably on Spina Bifida appropriations and initiatives (ongoing!)
• Increase funding for the National Spina Bifida Program to $10 million (a steep hill to climb; partially depends on our ability to develop and deploy an effective grasstops effort on targeted Members of Congress)
• Double federal research investment in Spina Bifida basic science, clinical, educational, and psychosocial areas of research (depends on NIH and its subinstitutes and centers)
• Double the number of targeted Capitol Hill visits from 100 per year to 200 (we are working on it!)
• Lead efforts to develop the National Spina Bifida Patient Registry (well on our way)
Challenges/Opportunities
• Grassroots and grasstops more important than ever.
• Need more champions in both chambers and both parties.
• Need to offer solutions, not just criticism or complaints.
• Coalitions important venues to leverage increasingly scarce resources (e.g., NHC).
• Relationship with CDC important for future of the program.
• Need to revisit relationships and efforts at NIH, FDA, AHRQ, etc.
Thank You!
Ilisa Halpern Paul, MPPManaging Government Relations Director
202/230-5145, [email protected]
Other Team DBR-SBA Members:
Jeremy ScottGovernment Relations Director
202/230-5197, [email protected]
Elaine ViningGovernment Relations Director
202/230-5676, [email protected]