Ryan White CARE Act Feedback from

1. Ryan White CARE Act Feedbackfrom January 19th, 2006

2. The AIDS Institute is a national nonprofit organization promoting action for social change through public policy research, advocacy and education.Dr. Gene CopelloExecutive Directorgcopello@theaidsinstitute.orgCarl SchmidDirector of Federal Affairscschmid@theaidsinstitute.orgJamila TaylorPublic Policy Associatejtaylor@theaidsinstitute.orgwww.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’sBasis 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. CaliforniaNorth 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) ADAP: It’s Just Not about Waiting Lists

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!