New York State position on the Re-authorization of Ryan White Funding for 2004-5:

(1)
Ryan White CARE Act Reauthorization
Prevention Planning Group
July 21, 2005

(2)
Ryan White CARE Act
Titles: Funding: Services:
Ryan White CARE Act Reauthorization
Challenges Nationwide: Proposals of Concern to New York: NASTAD Principles: NASTAD Recommendations:
New York State Recommendations: Activities to Date:
(2)

(3)
Ryan White CARE Act
Federal legislation governing health care and supportive service programs for persons with HIV/AIDS
First enacted by Congress in 1990 Reauthorized in 1996 and 2000 Next reauthorization: 2005

(4)
Ryan White CARE Act Titles

Title I: Emergency assistance to localities (EMAs) disproportionately affected by HIV/AIDS. New York’s EMAs: New York City, which includes the Lower Hudson region; Long Island; Dutchess
County.

Title II: Funds to states for health care, treatment and support services for persons with HIV/AIDS and their families.

Title III: Grants to providers for early intervention services and outpatient care. Also funds capacity development and planning grants.

Title IV: Provides grants directly to providers for coordinated services and access to research for children, youth, and women with HIV/AIDS and their families.

AETC (AIDS Education and Training Center): Provides grants to regional centers for education and training for primary care professionals and other AIDS-related personnel.

SPNS (Special Projects of National Significance): Provides grants for demonstration, research, and evaluation programs to identify innovative models of HIV care.

Dental Reimbursement Program: Provides grants for uncompensated costs incurred in providing oral health care to persons with HIV/AIDS.
(3)

(5)
Ryan White CARE Act Funding
New York State - 2004-05
$345.8 million TOTAL
$3.9 million SPNS
$5.6 million Dental
$4.0 million AETC
$10.9 million Title IV
$22.8 million Title III
$169.3 million Title II
$129.3 million Title I

(6)
Per Capita Ryan White Funding
5,111
10,531
2,692
4,709
665
4,772
506 744
1,875 2,260
1,425 1,845
$0
$2,000
$4,000
$6,000
$8,000
$10,000
$12,000
All RWCA Title II Base ADAP only
New York State Highest Lowest National
(4)

(7)
Services Funded by Ryan White CARE Act
Titles I & II
Medical Care: Medications (ADAP): Case Management: Treatment Adherence:
Support:
Mental Health Services: Counseling (e.g.,SubstanceAbuse, Risk Reduction): Peer Support: Housing Assistance: Nutrition/Meals: Transportation: Outreach for Case Finding: Other Supportive Services:

(8)
AIDS Drug Assistance Program
(ADAP)
Goal: All Americans with HIV infection should have access to state-of-the-art care and treatment. Nationally, ADAPs serve 136,000 Americans annually. Since inception, New York State’s ADAP has served more than 70,800 individuals. Annually, New York State’s ADAP serves more than 22,200 individuals.
(5)

(9)
HIV UNINSURED CARE PROGRAMS
ACTUAL EXPENDITURES by QUARTER/YEAR 1996-Present
2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q 4Q 1Q 2Q 3Q
96 97 98 99 00 01 02 03 04
$0
$10
$20
$30
$40
$50
$60
$70
Millions
HOME CARE ADAP PLUS ADAP APIC

(10)
CARE Act Reauthorization:
Challenges Nationwide

• Equitable access to care

• ADAP crisis (as of 5/05): - 1,891 individuals on waiting lists in ten states. - 1,438 of these individuals are currently receiving medications through the President’s initiative, which expires 9/05. - 453 are not covered by the President’s initiative. - 11 states have implemented other cost containment measures - 11 states anticipate new or additional program restrictions during the fiscal year ending March 2006 • Dollars available per AIDS case • Perceived funding disparity between EMA and non-EMA states

• Adequately funding areas with severe need - existing and emerging.

• Reliance on Title II to achieve equity and to address the ADAP crisis
(6)

(11)
CARE Act Reauthorization:
Proposals of Concern to New York
1. Change the Title II formula to eliminate or reduce the statewide component of the Title II base formula (i.e, eliminate or change “80-20”).
The formula for determining the Title II base awards (80-20) is calculated by using a state distribution factor and a non-EMA distribution factor. Including a statewide component in the base funding formula recognizes the role of states in coordinating a statewide response to the epidemic. Eliminating or changing 80-20 would reduce funding to states that are heavily burdened by the epidemic.

(12)
CARE Act Reauthorization:
Proposals of Concern to New York
Impact of elimination of “80-20” on New York State:
• Based on the FY 05 award, New York State would lose an estimated $22.8 million, or 56% of the Title II base award.
• Compared to all states, NYS would suffer the highest loss in dollars.
• The impact of this loss to New York State would be disastrous in terms of services for persons with HIV/AIDS.
7

(13)
CARE Act Reauthorization:
Proposals of Concern to New York
2. Eliminate or drastically change hold harmless provisions. The “hold harmless” provisions of the law limit the loss of resources to a jurisdiction over time in order to avoid substantial reductions in funding and the devastating effects associated with dismantling service programs.

(14)
CARE Act Reauthorization:
Proposals of Concern to New York
3. Shift funds to southern states.
This proposal is based on a widely held perception - that the HIV/AIDS epidemic has “shifted” from some states to others - which is not true. While the epidemic has expanded, a few states continue to carry the heaviest burden associated with the epidemic. More than half of all persons with HIV/AIDS in the U.S. reside in five states (New York, California, Florida, Texas, and New Jersey). Shifting funds among regions would reduce funding to states that are heavily burdened by the epidemic and would result in funding based on region rather than need.
(8)

(15)
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
Living AIDS Cases
California Florida Georgia Illinois Maryland
New Jersey New York Pennsylvania Texas Puerto Rico
Living AIDS Cases
1994 - 2003
Source: CDC HIV/AIDS Surveillance Report, Volumes 6-15

(16)
CARE Act Reauthorization:
Proposals of Concern to New York
4. Delay the incorporation of HIV cases into the Title I and Title II formulas.
Continued use of AIDS data in allocating resources disadvantages states that have implemented effective treatment programs, as fewer people progress to AIDS. Combined HIV/AIDS data are more appropriate for purposes of defining the scope of the epidemic and identifying need.
(9)

(17)
Reported AIDS Cases
1994 - 2003
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
Reported AIDS Cases
California Florida Georgia Illinois Maryland: New Jersey: New York: Pennsylvania: Texas: Puerto Rico:
Source: CDC HIV/AIDS Surveillance Report, Volumes 6-15

(18)
CARE Act Reauthorization:
Proposals of Concern to New York
5. Revise the structure of the CARE Act (e.g., consolidate or eliminate titles).
6. “Medicalize” the CARE Act.
This change would limit allowable services to medical/clinical services, reducing or eliminating essential support services that enable access to therapies and care. This change would disadvantage states that have devoted other resources to HIV/AIDS care (e.g., Medicaid).
(10)

(19)
CARE Act Reauthorization:
Proposals of Concern to New York
(7). AIDS Action ADAP Proposal
Proposes:
ADAP as a separate title. Open enrollment. Open formularies. Portability. Intent is commendable (i.e., improved access to medications and care). However: Real problems associated with fiscal pressures on ADAPs are cloaked in rhetoric (e.g., “streamlining” “modernizing,” and “managed growth”). A positive outcome is entirely conditional upon a doubling of the ADAP appropriation in the next fiscal year and a $100 million increase each year thereafter. Making ADAP a separate title has no value.

(20)
CARE Act Reauthorization:
Proposals of Concern to New York
AIDS Action ADAP Proposal (continued)
Lacks an understanding of existing ADAP programs and issues and proposes programs and activities that are already in place (e.g., create a clinical panel; issue guidelines on formularies; implement insurance continuation programs; allow ADAP funds to be used for lab work and medical monitoring; require a plan for coordination of health care services and ADAP). The recommendation to discontinue “burdensome” rebate programs and purchase drugs through a single federal agency demonstrates a lack of understanding of the drug purchasing, distribution, and rebate systems currently utilized by state ADAPs.
(11)

(21)
NASTAD Principles
Assure that all persons with HIV/AIDS have access to appropriate, high quality health care and support services. Assure that the role of states is recognized. Ensure coordination of publicly financed health care programs. Minimize administrative requirements.
Maintain maximum state flexibility in program design and implementation. Ensure no disruption in services or changes to infrastructure that impact service delivery. Emphasize the federal government’s responsibility to assure equitable access to care.

(22)

NASTAD Recommendations
Retain the current structure of the CARE Act. Include living HIV cases, in addition to living AIDS cases, in the allocation formulas, phased in over a ten-year period. Increase authorized funding levels for all components of the CARE Act. Maintain flexibility to allow CARE Act funds to support health care and support services based on locally determined needs. Do not mandate core services that are more limited than those allowed in the current law. Do not mandate percentage set-asides for specific services or limitations on the amount of funding that can be allocated for an eligible service.
(12)

(23)
NASTAD Recommendations
Revise the hold harmless provision to reflect a 1.5% loss each year (based on FY 05 funding), with a maximum possible loss of 7.5% over a five-year period. Allow states to use funds to serve clients covered by other payers if the services covered elsewhere are difficult to access. Prioritize new Title III grants for underserved states that do not have access to Title I funding and, as a secondary priority, underserved areas of states outside of Title I EMAs.

(24)
NASTAD Recommendations
ADAP: Enhance the availability of ADAP resources for persons with HIV/AIDS in all areas of the nation. Establish a guaranteed level of new funding for ADAP annually. Direct a portion of new funding to states with severe need (e.g., waiting lists, inadequate formularies, restrictive income eligibility). If the annual increase for the ADAP earmark is less than $60 million: Redirect unexpended funds from all titles. Institute an equal percentage tap on all titles excluding ADAP. Direct 80% of annual increases to the ADAP earmark. Direct 20% of annual increases to ADAP supplement.
13

(25)
NASTAD Recommendations
Emerging Communities:
Address inequities in per capita CARE Act funding by revising the emerging communities grants to provide additional Title II resources to states in need. Authorize $35 million in funding for states without Title I EMAs and states in which 50% or greater of their cases reside outside of Title I EMAs. Reduce Title I eligibility to 1,500 cases.

(26)
CARE Act Reauthorization:
New York State Recommendations
Retain the existing framework for Title II funding to states, with the base formula related to cases in the entire state as well as in areas outside of EMAs (i.e., 80-20), and with earmarked ADAP funds as a component of Title II with a separate allocation formula.
Retain hold-harmless provisions that limit the loss of resources to a jurisdiction over time. Revise the allocation formula to include cases of HIV - not just AIDS. Retain the existing multi-title structure of the CARE Act, with ADAP as a component of Title II.
14

(27)
CARE Act Reauthorization:
New York State Recommendations
Continue to fund a range of health care and supportive services. Increase ADAP supplement and award funds based on need. Refrain from mandating specific “core” services; flexibility at the local level is key. Strike region-specific set-asides (i.e., strike “emerging communities” provision of Title II) and reallocate funds to states with severe need.

(28)
Activities to Date
Submitted comments on two occasions to the CDC/HRSA Advisory Committee on HIV and STD Prevention and Treatment. Presented to PACHA. Conducted hill visits to present New York’s issues and recommendations. Presented to New York congressional delegation. Presented recommendations at two national conferences.
Presented to New York State AIDS Advisory Council. Presented to Ryan White Title II network coordinators. Active in NASTAD’s efforts to develop proposals that all states can embrace. Participated in HRSA studies on reauthorization issues.

Sincerely,

Derryck S. Griffith
Political Educator & Advocate.
Manhattan. New York City.

Tel# 1-212-337-3093
E-mail: derryck1950@verizon.net