Ilisa Halpern Paul, MPP Managing Government Relations Director and Jeremy Scott

1. 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

2. 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

3. 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)

4. 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

5. 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

6. 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

7. SBA FY 2010 Funding Priorities • $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). • $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. • $25.623 million to strengthen the CDC’s National Birth Defects Prevention Network. • $77.059 million for the CDC’s National Center on Birth Defects and Developmental Disabilities. • $405 million for the Agency for Healthcare Research and Quality (AHRQ). • $33.349 billion for the National Institutes of Health (NIH) to support biomedical research.

11. CDC SB Funding

12. 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.

13. 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

14. 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.

15. 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)

16. 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.

17. 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