Transcript The Ryan White Care ACT Feedback

Ryan White CARE Act Feedback
from
January 19th, 2006
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
[email protected]
Carl Schmid
Director of Federal Affairs
[email protected]
Jamila Taylor
Public Policy Associate
[email protected]
www.theaidsinstitute.org
(202) 835-8373
The Next Wave in AIDS Care:
Reauthorization of the Ryan
White CARE Act, 2005-2010
April 18, 2005
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
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
ADAP: It’s Just Not about
Waiting Lists
California North Carolina
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Financial Eligibility (as % of
FPL)
Number of Drugs on Formulary
OI Prophylaxis covered
% State Contribution
Per Capita Drug Expenditure
(June 2003)
400%
125%
152
16
58
0
28%
36%
$1,159
$1,238
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
The President’s Principles:
Focus on Life-Saving & Life-Extending Services
Establish Core Set of Medical Services:
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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.
The President’s Principles:
Focus on Life-Saving & Life-Extending Services
Require 75% of Funds in all Titles for Core Medical Services:
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SUPPORT
Appears to be an appropriate level.
Maintain Federal List of Core ADAP Drugs/Receive Priority
for Funding: SUPPORT
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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
The President’s Principles:
Increase Prevention Efforts
Require States to Implement Routine Voluntary Testing/
Encourage Private Providers to do same: SUPPORT
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Already included in current CARE Act
Cost should be paid for by CDC, not Ryan White CARE Act.
The President’s Principles:
Increase Accountability
All States Submit HIV Data by FY2007: SUPPORT
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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
The President’s Principles:
Increase Accountability
State & Local Care Delivery Coordination: SUPPORT

Including better coordination amongst the Titles
Eliminate Double Counting: SUPPORT
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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
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Will distribute resources more equitably
Current law holds back resources to other areas in need
The President’s Principles:
Increase Flexibility
Secretary Redistribute Unallocated Balances to State ADAPS
In Need: SUPPORT
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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
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NOT FULLY SUPPORT
Support conflict of interest requirements
Support cap in planning council expenditures
Support Councils, w/PLWHA participation, but decisions advisory
The President’s Principles:
Deficiencies
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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
The President’s Principles:
Deficiencies
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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
The President’s Principles:
Deficiencies
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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)
THANK YOU!