Changes in the Political Environment:
What’s happening? What does it
mean for people with Spina Bifida?
Ilisa Halpern Paul, MPP
Managing Government Relations Director
and
Jeremy Scott
Government Relations Director
Drinker 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
Dollars in Billions
35
30
25
20
15
NIH Funding
10
5
0
1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Dollars in Millions
NIH SB Budget - Revised Method
16
14
12
10
8
6
4
2
0
NIH SB Budget
2005
2006
2007
2008
CDC Budget Summary Before Rescission
7
6
Dollars in Billions
5
4
3
2
1
0
1997
1998
1999
2000
2001
2002
2003
2004
Fiscal Year
2005
2006
2007
2008
2009
CDC SB Funding
Centers for Disease Control and Prevention (CDC)
National Spina Bifida Program
(amount in the thousands)
6,000
5,100
5,000
4,000
3,000
2,000
3,000
5,100
5,198
5,468
3,657
2,000
1,000
0
FY 2003
Enacted
FY 2004
Enacted
FY 2005
Enacted
FY 2006
Enacted
FY 2007
Enacted
FY 2008
Enacted
FY 2009
Enacted
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, MPP
Managing Government Relations Director
202/230-5145, ilisa.paul@dbr.com
Other Team DBR-SBA Members:
Jeremy Scott
Government Relations Director
202/230-5197, jeremy.scott@dbr.com
Elaine Vining
Government Relations Director
202/230-5676, elaine.vining@dbr.com