Changes in the Political Environment What s happening What

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 111 th 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 3 rd, 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 111 th 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.

CDC SB Funding

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