1. Ryan White CARE Act Feedback from January 19 th, 2006

2. The AIDS Institute is a national nonprofit organization promoting action for social change through public policy research, advocacy and education. Dr. Gene Copello Executive Director gcopello@theaidsinstitute.org Carl Schmid Director of Federal Affairs cschmid@theaidsinstitute.org Jamila Taylor Public Policy Associate jtaylor@theaidsinstitute.org www.theaidsinstitute.org (202) 835-8373

3. The Next Wave in AIDS Care: Reauthorization of the Ryan White CARE Act, 2005-2010 April 18, 2005

4. The AIDS Institute’s Basis for its RWCA Proposals Changing Epidemic & Growing Importance of Drug Treatment Huge Number of People Not Receiving Treatment -IOM: 315,000 people -CDC: 212,000 (44%) Not Receiving ART Important Role of Public Health Care Financing -Only 31% in private insurance Wide Variation in Care Based on Geography

5. A Patchwork of Care Great fluctuations in Care & Treatment  Medicaid Generosity & Eligibility  Ryan White Distribution of funds  State and Local Contributions  State and Local Eligibility Requirements  Cost of Care

6. ADAP: It’s Just Not about Waiting Lists California North Carolina 400% 125% 152 58 16 0 28% 36% $1,159 $1,238  Financial Eligibility (as % of FPL)  Number of Drugs on Formulary  OI Prophylaxis covered  % State Contribution  Per Capita Drug Expenditure ( June 2003)

7. The President’s Principles: Serve the Neediest First Establish Indicators to Determine Severity of Need for Core Medical Services: SUPPORT In addition to HIV prevalence, consider poverty & number of uninsured Don’t want to penalize States that provide resources Biggest determinant should be Number of HIV Cases; other factors much smaller weight Should apply to states and EMA formula distributions Question when it will be implemented 

8. The President’s Principles: Focus on Life-Saving & Life-Extending Services Establish Core Set of Medical Services: SUPPORT President did not define the services. The AIDS Institute’s definition: Primary Medical Care, Medications, Laboratory Services, Oral Health, Mental Health, Substance Abuse Treatment, Case Management, Hospice, and medical setting counseling such as adherence, nutritional, prevention, and wellness counseling. 

9. The President’s Principles: Focus on Life-Saving & Life-Extending Services Require 75% of Funds in all Titles for Core Medical Services: SUPPORT Appears to be an appropriate level. Maintain Federal List of Core ADAP Drugs/Receive Priority for Funding: SUPPORT Should, at a minimum, include all drugs recommended by DHHS guidelines (HIV antiretrovirals and medications to prevent and treat Opportunistic Infections) Available to patients at 350% of the Federal Poverty Level (FPL) or below 

10. The President’s Principles: Increase Prevention Efforts Require States to Implement Routine Voluntary Testing/ Encourage Private Providers to do same: SUPPORT Already included in current CARE Act Cost should be paid for by CDC, not Ryan White CARE Act.

11. The President’s Principles: Increase Accountability All States Submit HIV Data by FY2007: SUPPORT Will better reflect current reality of the epidemic Majority of states in compliance; others moving in that direction CDC will have to use estimated HIV cases for the short term, which is doable Hold Grantees Accountable for Reporting on System & Client-level Data & Progress: SUPPORT Must end unduplicated client data systems Require Ryan White CARE Act funds are payer-of last-resort: SUPPORT A requirement under current law that should be enforced

12. The President’s Principles: Increase Accountability State & Local Care Delivery Coordination: SUPPORT Including better coordination amongst the Titles Eliminate Double Counting: SUPPORT Will distribute resources more equitably For every dollar currently distributed due to this provision another dollar is not going to another jurisdiction that needs services. Eliminate Hold Harmless: SUPPORT Will distribute resources more equitably Current law holds back resources to other areas in need

13. The President’s Principles: Increase Flexibility Secretary Redistribute Unallocated Balances to State ADAPS In Need: SUPPORT Must end Unallocated Balances; Proposed Reforms will help Funds should not return to US Treasury Will assist struggling ADAPs & Unforeseen Events Planning Councils Voluntary & Only Advisory Bodies: DO NOT FULLY SUPPORT Support conflict of interest requirements Support cap in planning council expenditures Support Councils, w/PLWHA participation, but decisions advisory

14. The President’s Principles: Deficiencies  Lacks details and specifics  Does not recognize the need for increased funding Will still leave many people w/o care and treatment  Silent on the need for Increased Federal Government Coordination Medicare Part D is perfect example where better coordination is necessary  Silent on Drug Pricing Should be consistent across all States & be at lowest possible price paid by the federal government, or lower

15. The President’s Principles: Deficiencies  Silent on Other Key Issues: Portability of Services Increased Co-morbidities, such as Hepatitis B & C Need to expand Back to Work Programs Need to increase Insurance Continuation programs Need for trained HIV Medical Specialists

16. The President’s Principles: Deficiencies  Silent on the following The AIDS Institute Recommendations: Increase Formula Portion of Title I Funds from 50% to 75% ADAP Contributions Count towards TROOP Enactment of the Early Treatment for HIV Act (ETHA)

17. THANK YOU!