Steven E. Wolf, MD Golden Charity Guild Charles R Baxter MD Chair

1. ABA National Leadership Conference: Ten Year History of Successful Advocacy Efforts Steven E. Wolf, MD Golden Charity Guild Charles R Baxter MD Chair Professor and Vice-Chair for Research Chief, Burn Services Department of Surgery University of Texas – Southwestern Medical Center Editor-in-Chief, Burns

2. Advocacy Efforts • Ten years advocating for burned patients • Presentations from Legislative and Executive leaders • Providing insight from these offices for areas of interest to ABA and IAC members • Meetings with Legislators and Staff with specific requests ‘on the Hill’

3. ‘Track Record’ • Twelve specific issues supported in 10 years • 6 completely successful (50%) • 3 partially successful (25%) • 3 not yet successful AGGREGATE SUCCESS 75%!

4. Successes • Increased funding for mass casualty preparedness through the Bioterrorism Act of 2002 • Fire-safe Cigarettes • Centralized communication system for information on burn center capacity for mass casualty preparedness • Changed DRG for inhalation injury • Federal funding for burn research to support combat casualty care ($40M and counting) • ‘Burns’ included in the definition of trauma for current legislation • Decreased waiting period for Medicare Disability coverage for the severely burned through the Affordable Care Act • ‘Doc Fix’

5. Specific Asks and Results • 2002 • Support for Medicare/Medicaid disproportionate share programs to be based on the actual volume of uncompensated care • Medicare Claims Processing Manual – ‘For discharges occurring on or after April 1, 1988, the additional payment amount for the DRGs related to burn cases, which are identified in the most recent annual notice of prospective payment rates is computed using the same methodology (as stated above in section 20.1.2.3) except that the payment is made using a marginal cost factor of 90 percent instead of 80 percent’. • In spite of efforts in this regard, no changes have occurred in disproportionate share programs for burn centers. • Support for the Hospital Preparedness Program in the Bioterrorism Act of 2002 • As a result of this act, over $100M has been distributed to the States to increase preparedness for mass casualty events

6. Specific Asks and Results • 2003 • Support for legislation to mandate fire-safe cigarettes at the state and federal levels • This effort was completely successful. All states currently have fire-safe cigarette legislation, completed in March 2010.

7. Specific Asks and Results • 2004 • Direct FEMA and Homeland Security to implement and fund nationwide Advanced Burn Life Support training programs for first responders and emergency department personnel • No federal legislation was found to provide funding for such a program. The Department of Defense provides ABLS training for active duty deployed personnel, but this has not changed since development of the course. • Establish in coordination with the National Disaster Medical System a nationwide centralised communication system for rapid collection and dissemination of information on burn center capacity to treat burn casualties in cases of a national emergency • This effort was completely successful. The Department of Health and Human Services currently tracks burn bed availability through the ‘Burn Assets Resource Tracking System (BARTS). • Support for the creation of two new DRGs for ‘Extensive Third Degree Burn with Skin Graft and Tracheostomy’ and one for ‘Extensive Third Degree Burn with Skin Graft and Inhalation Injury’ (revise DRGs 482 and 483) • Partially successful, changed DRG 483 to include ventilation over 96 hours with and without major operating room procedure in 2005

8. Specific Asks and Results • 2006 • Support burn centers by legislation to provide usual Medicare reimbursement rates for care provided at ABA verified burn centers and 80% of usual rates for non-verified burn centers • Unsuccessful. Efforts continue in regards to carve outs for verified burn centers who have demonstrated peer-reviewed quality of burn care. Perhaps a comparative effectiveness study through PCORI would show benefits to direct federal funding in the future. • Direct NIGMS to devote substantially increased resources for burn research, particularly clinical research and multicenter trials • Unsuccessful on the direct aim, but this theme led to over $40M in Department of Defense Clinical Trial Research funding in burns (see 2008) • Support continued funding of TRISAT • Successful through 2008

9. Specific Asks and Results • 2007 • Support HR 685 that provides a waiver for the 24-month waiting period before an uninsured person with disabling burns becomes eligible for Medicare disability coverage and the 5-month waiting period for Social Security Disability similar to End-Stage Renal Disease and Amylotrophic Lateral Sclerosis. This would be done through co-sponsoring this bill and introducing a similar one in the Senate • Sponsored by Congressman Neal (D-Massachusetts) and Senator John Kerry, and co-sponsored by 33 others. Referred to Ways and Means Subcommittee on Health in the House in Jan 2007 but died in Committee. Since this time, the changes above were incorporated into the Affordable Care Act, accomplishing the desired result

10. Specific Asks and Results • 2008 • Advocate more federal funding for multicenter burn research to support combat casualty care, specifically $3.5M in the supplemental Defense bill • Overall this effort was highly successful with the support of Senator Barbara Boxer (CA) resulting in approximately $30M in research funds for burns administered by the ABA.

11. Specific Asks and Results • 2009 • Support HR 723 (Social Security and Medicare Improved Burn Injury Treatment Access Act of 2009) which provides a waiver for the 24-month waiting period before an uninsured person with disabling burns becomes eligible for Medicare disability coverage and the 5-month waiting period for Social Security Disability. This will require an evaluation for continued disability at 3 years from injury and is limited to only those with no private or public insurance (cost $30M-$40M) • Introduced (again), but died in Committee. Eventually incorporated into the Affordable Care Act

12. Specific Asks and Results • 2010 • Support of a request for $8M for multicenter burn research to support combat casualty care • See 2008

13. Specific Asks and Results • 2011 • Support the ‘CARES’ Act (HR 1955 and S 1045), Children’s Access to Reconstructive Evaluation and Surgery) which requires insurance companies to provide coverage for treatment of deformities. Specifically, support inclusion of ‘burns’ as Title 42 of United States Code section 300d-31(4) specifically defines trauma as ‘an injury resulting from exposure to a mechanical force’ • The change in wording was successful in that burns was added to the definition of ‘trauma’ for this bill. The bill was reintroduced with 41 sponsors in the House and 5 sponsors in the Senate), but died in Committee (Ways and Means in the House and Health, Education, Labor, and Pensions in the Senate. • Support HR 1792 and S 1035 (Fire Sprinkler Incentive Act) to allow for accelerated depreciation for installed fire sprinkler systems • This bill has a number of sponsors (51 House and 5 Senate) and has been introduced twice but died in Committee (Ways and Means in the House and Finance Committee in the Senate).

14. Specific Asks and Results • 2012 • Support the ‘CARES’ Act (HR 1955 and S 1045) which now includes ‘burn’. • See 2011 • Opposition to cuts in Medicare and Medicaid in the so-called ‘doc fix’ • A 10-month reprieve was passed soon after our visit to the Hill that prevented over 27% cuts in Medicaid and Medicare payments to providers.

15. Summary • Issues that remain • This often takes several years of effort with ‘shifting sands’… • Improved reimbursement for verified burn centers with demonstrated peer-reviewed excellence and higher quality of care • Fire Sprinkler Act • Continued support for burn research • ???