State AIDS Drug Assistance Programs:
A National Status Report on Access
Technical Report

Table Of Contents

Acknowledgments

This report would not have been possible without the generous financial support of the Henry J. Kaiser Family Foundation and their continuing commitment to be at the forefront of HIV/AIDS policy issues. The authors would especially like to thank Dr. Mark D. Smith, who assisted with initiating the project and Dr. Sophia Chang and Tina Hoff of the Kaiser Family Foundation for their support, encouragement and expert advice in shaping this report.

We owe a great deal of gratitude to our project advisory committee members who reviewed and provided suggestions for this report and our national ADAP survey. They are: Moises Agosto, National Minority AIDS Council; Dr. Roxanne Cox-Iyamu, Whitman-Walker Clinic; Anne Donnelly, Project Inform; Anita Eichler, Division of HIV Services (HRSA); T. Randolph Graydon, Health Care Financing Administration; Tracey Hooker, National Conference of State Legislatures; David Mulligan, Massachusetts Department of Public Health; Tracey Orloff, National Governors' Association; Valerie Reeder, Heaven in View, Inc.; Gary Rose, formerly of AIDS Action Council and now with IssuesSphere; and Jane Silver, American Foundation for AIDS Research.

We also wish to express our gratitude to the members of the National Alliance of State and Territorial AIDS Directors (NASTAD) and the AIDS drug assistance program (ADAP) coordinators across the country for completing the national ADAP survey that was the basis for this report. We are truly grateful that, in the midst of a time of crisis, and often with minimal or non-existent staff support, these individuals took the time to respond to our survey and numerous follow up telephone calls.

Finally, special thanks to the state AIDS directors, ADAP program managers, state and federal officials and HIV/AIDS policy advocates who devoted additional time to review and provide feedback on the draft of this report. Their contributions, along with those of our project committee, have helped to make this summary report and its companion technical report among the most comprehensive and useful documents on the status of ADAPs ever published.

The principal authors of this report are Arnold Doyle, Richard Jefferys and Joseph Kelly.

The National ADAP Monitoring Project

In an effort to monitor the rapidly changing fiscal and scientific environments in which state AIDS drug assistance programs (ADAPs) are operating, and the impact of these changes on the programs and the individuals that they serve, the National Alliance of State and Territorial AIDS Directors (NASTAD) was commissioned by the Henry J. Kaiser Family Foundation, Menlo Park, CA to conduct a two-year National ADAP Monitoring Project. NASTAD is uniquely qualified to monitor the situation of state ADAPs as it is an association of the individuals who direct AIDS prevention, care and treatment services at the state level. NASTAD's co-funded partner in the project, the AIDS Treatment Data Network (ATDN), is one of the most highly respected HIV/AIDS treatment information centers in the nation; ADTN maintains an on-line information library of the most recent treatment advances in HIV/AIDS, as well as detailed information on publicly- and privately-funded sources of reimbursement for HIV/AIDS treatments, including ADAPs.

Through the National ADAP Monitoring Project, NASTAD and ATDN will produce summary and comprehensive technical annual reports on the status of state ADAPs, with follow-up reports at six-month intervals, over the next two years. This July 1997 technical report provides a comprehensive analysis of state ADAPs based on a national survey completed in March 1997. A shorter summary report provides an overview of the major findings of the national ADAP survey and is available through the Kaiser Family Foundation at (800) 656-4533 or NASTAD at (202) 434-8090. Both the technical report and the summary report are also available for downloading from the Internet at http://www.aidsnyc.org/adap. This Internet site, developed by ATDN, also contains detailed descriptive information about every state ADAP including program eligibility, application procedures, access and drug coverage. NASTAD and ATDN can also be reached at the following addresses:

The National Alliance of State and Territorial AIDS Directors
444 North Capitol Street, NW
Suite 339
Washington, DC 20001
(202) 434-8090
(202) 434-8092 (FAX)

AIDS Treatment Data Network
611 Broadway, Suite 613
New York, NY 10012-2809
(800) 734-7104
(212) 260-8869 FAX

Executive Summary

State AIDS drug assistance programs (ADAPs) provide access for people living with HIV/AIDS to medications that treat HIV disease and prevent the onset of opportunistic infections. State ADAPs serve as a critical lifeline for many low-income individuals living with HIV/AIDS in the United States who do not have public health insurance or adequate private health insurance. These state-administered drug reimbursement programs form one link in the continuum of publicly-funded HIV care and services available to low-income individuals supported by the Ryan White CARE Act, Medicaid, Medicare, and local indigent health care programs. The critical role that ADAPs play in improving access to HIV/AIDS treatments have made these programs the subject of increasing public scrutiny and debate.

ADAPs were developed to serve those who are uninsured and those who are underinsured and lack coverage for medications. Potential clients include those individuals who may not be disabled and therefore cannot qualify for government-sponsored health insurance programs like Medicaid. Within general federal guidelines established through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, states set unique program financial and medical eligibility criteria for their ADAPs, determine the type and number of drugs covered by the program (the ADAP formulary), and establish how covered drugs will be purchased and distributed to clients. This has led to wide variability among ADAPs from state to state vis-a-vis their structures, eligibility criteria, accessibility and the type and scope of prescription drug coverage available to clients.

In March of 1997, the National Alliance of State and Territorial AIDS Directors (NASTAD) in collaboration with the AIDS Treatment Data Network (ATDN) conducted a comprehensive survey for the Kaiser Family Foundation of all 52 AIDS programs in the United States that receive funds through Title II of the Ryan White CARE Act. The following is a summary of the major findings of this national study:

What's Recently Been Happening With ADAPs?

How Accessible and Comprehensive Are ADAP Services?

Future Opportunities and Challenges

Introduction

Overview of State AIDS Drug Assistance Programs (ADAPs)

Background

Shortly after the Food and Drug Administration (FDA) approved the first anti-HIV drug in 1987, AZT (Retrovir), Congress appropriated funds for states to establish state-administered AIDS Drug Reimbursement Programs to assist low income individuals in accessing this new medication. As the arsenal of treatment options for HIV/AIDS slowly expanded over the years, these programs also expanded to provide more treatments to a steadily increasing number of clients. In 1990, authorization for the AIDS Drug Reimbursement Programs was subsumed under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Currently, these drug reimbursement programsónow commonly known as AIDS Drug Assistance Programs (ADAPs)óare authorized under Title II of the CARE Act to provide access to HIV/AIDS medications for low income, uninsured and underinsured individuals. State-administered ADAPs are one part of a larger health care system for people living with HIV/AIDS that includes Medicaid, Medicare, private insurance, state/local indigent care programs, and pharmaceutical manufacturer-sponsored patient assistance programs. ADAPs have often been a bridge for clients between private insurance coverage and disability-based medical assistance programs like Medicaid.

States have authority over many aspects of their local ADAP. Within broad guidelines established by the Health Resources and Services Administration (HRSA), states set financial and medical eligibility criteria for admission to the program and, sometimes, for access to specific covered drugs. States establish and administer their own ADAP formularyóthe type and number of drugs covered by the programóand develop procedures for how drugs are added to or deleted from the formulary. Finally, states determine how their ADAP will be administered and how covered drugs will be purchased and distributed to clients. This level of state flexibility in establishing the structure of state ADAP has resulted in significant variation among ADAP programs across the country.

State-administered ADAPs are funded primarily with federal funds appropriated under Title II of the CARE Act. Until recently, states determined how much of their overall Title II award would be devoted for ADAP. Beginning in FY 1996, however, Congress appropriated ADAP-targeted funds under Title II of the CARE Act, thereby giving states an ADAP-specific appropriation in addition to base Title II funds the states wish to budget towards the ADAP program. In some states, ADAPs also receive state-appropriated funds to support the program. A number of state ADAPs receive contributions from local Title I Eligible Metropolitan Areas (EMAs) to support the state-administered program.

Recent Trends

The explosive growth in state-administered ADAPs can reasonably be traced back to the approval of a new reverse transcriptase inhibitor, 3TC (Epivir), and the first protease inhibitor, saquinavir (Invirase), in late 1995 and the concomitant rise in the use of combination antiretroviral therapy in the treatment of HIV/AIDS. In early 1996, two additional protease inhibitors, ritonavir (Norvir) and indinavir (Crixivan), received FDA approval. The licensure of these new drugs and their reported efficacy in slowing the progression of HIV disease received significant media attention and sparked a resurgence of interest in antiretroviral therapy.

In the first half of 1996, many state ADAPs experienced large increases in program enrollment, utilization and monthly expenditures. Faced with rising expenditures and finite resources, many ADAPs were forced to take drastic measures to avoid bankrupting their programs. Among these measures were: capping program enrollment, restricting access to certain formulary medications, and delaying or indefinitely suspending coverage of the new drugs.

The appropriation of $52 million in federal emergency ADAP funding in FY 1996 provided some relief to the programs. However, many programs were forced to continue to maintain waiting lists for enrollment, reduce formularies and/or restrict coverage. Especially vulnerable were lower- and moderate-incidence states that receive no state or Title I EMA support. In anticipation of continued increased demand for access to the new medications, Congress appropriated $167 million specifically for state-administered ADAPs for FY 1997.

The ADAP Survey

Methodology

Using survey instruments previously developed by the National Alliance of State and Territorial AIDS Directors (NASTAD) as models, a comprehensive instrument was developed by NASTAD and ATDN staff for distribution to state AIDS directors and ADAP program managers in the fifty states, the District of Columbia and Puerto Rico (all recipients of federal funds under Title II of the Ryan White CARE Act). The survey instrument contained thirty-six questions to assess program operations/trends in the following areas:

An eleven-member project advisory committee was selected to provide input on the survey design, implementation and reporting. The project advisory committee also was charged with providing objective oversight of the ADAP surveying process and final report. The advisory committee is composed of representatives from national AIDS consumer and advocacy organizations, representatives from the Health Care Financing Administration (HCFA) and the Health Resources and Services Administration (HRSA), representatives from state governmental associations, and representatives from the private and public health sectors.

The survey instrument was distributed to the project advisory committee and a selected group of state AIDS directors and ADAP program managers for review and comment. The instrument was modified based on feedback from this group. The survey was then pilot-tested among five state ADAP programs. Following this pilot test, the survey was further modified, based on state responses, and prepared for distribution to all state ADAPs in mid-January 1997.

Survey Response and Follow-up

A total of fifty-two responses were received by March 15, 1997 from all states/territories that administer AIDS drug assistance programs. Follow-up phone interviews were conducted with the state ADAPs in order to clarify submitted information and to verify reported budget, expenditure and utilization figures. After verifying the reported information, data from the surveys were compiled and analyzed. A draft report based on the survey data was submitted to the project advisory committee for review and comment, and a finalized report was produced after receiving input from this group.

The findings from this report are based on this point-in-time survey. The authors recognize that the current ADAP situation is dynamic with changes in ADAP budgets, access criteria and approved drugs often changing throughout the course of a year. The National ADAP Monitoring Project will produce updated published status reports at six-month intervals over the next two years. In addition, up-to-date state-by-state ADAP information is available on the projectís Internet website: http://www.aidsnyc.org/adap.

Responding to the Emergency in Access to New Treatments

Background

The advent of combination antiretroviral therapy for HIV infection in late 1995 brought about an emergency in access to the new treatments for low-income individuals with HIV and AIDS who lack adequate private health insurance or Medicaid coverage. In previous reports, NASTAD and ATDN described the funding shortages experienced by state ADAPs and the limitations in coverage of FDA-approved pharmaceuticals on many state ADAP formularies. The new HIV/AIDS treatment breakthroughs, including the availability of protease inhibitors, and the alarms sounded by patient advocates and states over the crisis in funding for the costly new therapies led to significant responses from many quarters. The federal government, through increased funding for the Ryan White CARE Act AIDS treatment programs in FY 1996 and FY 1997, responded to the emergency. Many state governments, through increased state general revenue funding for ADAPs, in turn have responded. In addition, the growth in the number of new treatments with newer manufacturers entering the HIV/AIDS field and increased state aggressiveness in seeking cost containment measures, have led to an increase in the level of cost recovery achieved through HIV/AIDS drug manufacturer rebates and through private health insurance recovery.

ADAP Program Budgets

NASTAD has previously reported that in calendar year 1995 there were three main funding sources for ADAPs nationally. These sources included: the portion of federal Ryan White Title II funding which states opted to devote to ADAPs; state general revenue resources; and federal Ryan White Title I funding which Eligible Metropolitan Areas (EMAs) opted to contribute to state ADAPs. In 1995, total funding for ADAPs from all sources was reported by NASTAD to be $92.1 million with the breakdown of contributions from the three major sources as follows:

1995 ADAP Budget Nationally

SourceFundingPercentage
Title II (Federal):$40.6 million(44%)
State Funds: $30.7 million(33%)
Title I (Federal): $20.8 million (23%)
Total: $92.1 million(100%)

FY 1996 ADAP Budgets

The NASTAD/ATDN survey asked states to detail their ADAP budgets and funding sources for the Ryan White CARE Act Title II federal fiscal years 1996 and 1997. The findings indicate that funding for ADAPs nationally has grown by more than 318% since 1995.

In FY 1996, the most significant funding increase resulted from the first time ever dedicated federal appropriation of supplemental funding for ADAPs. The Clinton Administration proposed, and Congress agreed to, an increase of $52 million in FY 1996 for state ADAPs to provide FDA-approved HIV/AIDS therapeutics to eligible individuals. This increase, together with increased support states provided from their base Title II grants to ADAPs and a growth in state general revenue support for ADAPs, led to a 125% increase in funding nationally from $92.1 million in 1995 to $207.5 million in 1996.

FY 1996 ADAP Budget Nationally

SourceFundingPercentage
Title II Base (Federal): $58.2 million(28%)
State Funds:$53.7 million(26%)
Title II ADAP (Federal): $52.0 million(25%)
Title I (Federal): $25.9 million (13%)
Drug Rebates:$11.9 million(6%)
Insurance Recovery: $5.0 million (2%)
Other: $0.8 million (0%)
Total: $207.5 million(100%)

Survey Results

In FY 1996, 51 states and territories reported a total of $58.2 million in funding drawn from Ryan White Title II base formula grants (federal) which represented the highest percentage source (28%) for ADAPs nationally. Pennsylvania was the only state which did not devote a portion of its base Title II funding to ADAP in FY 1996, but it nonetheless devoted a substantial amount of state funding ($5,200,000) to ADAP. California ($9,849,105) and New York ($9,807,712), with the largest Ryan White Title II grants, were the states with the highest contribution from their Title II grants to ADAP. Alaska ($36,557) and North Dakota ($55,000) were the states with the smallest dollar contributions from their base Title II funding, but these represented relatively high percentage contributions from their small federal Title II funding allocations. State by state ADAP budgets for FY 1996 are detailed in Appendix I with tables which depict the percentage contributions to ADAP in each state from Title II base and ADAP supplemental grants, state funding, and Title I EMAs.

State general revenue support represented the next highest contributor to ADAPs nationwide with $53.7 million in FY 1996 (26% of the total). Thirty-four states provided state specific funding for ADAPs with the highest contribution ($15,600,000) from California and the lowest ($25,000) from West Virginia among those states reporting contributions. Eighteen states did not provide any state contribution to ADAP in FY 1996. The states with the highest percentage allocation of state funding compared with their overall ADAP budgets in FY 1996 were Louisiana (78%), Pennsylvania (76%), New Mexico (64%), and Illinois (58%). It is notable that 86% of the national contribution to ADAPs from states in FY 1996 was provided by the eight states which contributed over $1 million individually to ADAPs. These states were California, Illinois, Louisiana, Maryland, Massachusetts, New York, Pennsylvania, Puerto Rico and Texas.

The $52 million dedicated Title II ADAP appropriation in FY 96 represented one-quarter of the national ADAP budget and it meant a significant boost to struggling ADAPs in their ability to maintain fiscal stability. Its distribution also represented a majority of some individual ADAP budgets in FY 96 with the highest portions reported in Tennessee (65%), Oregon (64%), Michigan (54%) and Alaska (51%).

As the proportion of federal Title II support (base and supplemental grants) for ADAPs nationwide grew in FY 1996 from 44% to 53%, the percentage proportion of state and Title I EMA contributions decreased overall, but did not decrease in actual dollar amounts. Title I EMA contributions increased in FY 1996 from $20.8 million to $25.9 million nationwide, representing 13% of the national ADAP budget. Thirteen states reported dollar contributions from federal Title I sources to state ADAPs for the purchase or reimbursement of pharmaceuticals for eligible clients in the Title I areas in FY 1996. This represented 24% of all states and territories and 50% of the 26 states which have Title I EMAs located within their state boundaries. The 13 states were: Colorado, Connecticut, D.C., Georgia, Illinois, Maryland, Massachusetts, Michigan, New Hampshire, New Jersey, New York, Texas and Washington State. Title I EMAs in New York State (New York City, Nassau-Suffolk, and Dutchess County) contributed the greatest amount of funding ($19,858,730) to a state ADAP representing 77% of the overall Title I contribution to ADAPs nationwide. The lowest level of funding among those EMAs contributing was the Boston EMA to New Hampshireís ADAP ($72,308); however this contribution represented 17% of New Hampshireís overall ADAP budget in FY 1996. Percentage of Title I EMA contributions as a proportion of individual state ADAPs ranged from a high of 34% in New York State and D.C. ($800,000) to a low of 3% in Texas ($217,000 from the Houston EMA).

As states reported that they would fall short of ADAP funding before the end of the FY 1996 Ryan White Title II fiscal year (which ended March 31, 1997), the Health Resources and Services Administration (HRSA) allowed states meeting emergency funding conditions to apply for an early advance on FY 1997 dedicated ADAP supplemental funding. Three states (California, Florida and Illinois) were approved by HRSA for early advances on FY 1997 funding to be used prior to the end of FY 1996. Illinois subsequently declined the early federal advance as a result of a state emergency ADAP appropriation. California was approved for an advance of $6,592,973 and Florida was approved for an advance of $3,540,938. These two advances are not reflected in the FY 1996 budget tables and national ADAP funding, but are included in the FY 1997 funding tables.

In FY 1996, states also detailed the contributions to their budgets provided through HIV/AIDS drug manufacturer rebates. Twenty-one states reported actual cost recovery from pharmaceutical manufacturers in FY 1996 to recoup the costs of reimbursement for drugs provided to ADAP clients through local pharmacies. These revenues are returned to ADAPs and are plowed back into program budgets for reimbursement of other drug purchases. Nationally, drug rebates reported by states totaled $11.9 million, which represented 6% of the national ADAP budget. The most substantial rebates were made to New York ($5,600,000), California ($4,193,000), Illinois ($640,000) and New Jersey ($550,000). Many other states are able to achieve up-front discounts through Section 602 of the Veterans Health Care Act which allows for Public Health Service covered entities to purchase pharmaceuticals at deep discounts. The discounts achieved by those ADAPs which are structured to take advantage of these reductions through direct purchase of drugs are not reflected as revenue in the individual ADAP budgets. This report contains a more detailed discussion of the cost containment strategies employed by state ADAPs beginning on page 41.

To round out the FY 1996 ADAP budget picture: two states (New York and Illinois) reported revenue achieved through private health insurance recovery totaling over $5 million. Five states (Arkansas, Colorado, Ohio, Texas and Utah) reported other, smaller funding ñ totaling approximately $800,000 ñ such as transfers from other funding sources and back-billing of Medicaid for the period for which an ADAP client is in the process of applying for state Medicaid eligibility. FY 1997 Estimated ADAP Budgets

Overview

States provided NASTAD/ATDN with estimated FY 1997 budgets for ADAPs. Since the Ryan White Title II FY 1997 fiscal year begins in April 1997, and the survey responses were provided in March 1997, the budget represents statesí best estimates of funding for the coming fiscal year. Although one or more of the budget elements will not be expected to change during the fiscal year (e.g., the Title II ADAP supplemental), several of the budget elements may change, most notably state contributions, depending on final state appropriations. State by state ADAP budgets for FY 1997 are detailed in Appendix II with tables which depict the percentage contributions to ADAP in each state from Title II base and ADAP supplemental grants, state funding, and Title I EMAs. In addition, tables are included in Appendix II which provide comparisons between FY 1996 and FY 1997 ADAP funding by state and major funding sources.

FY 1997 Estimated ADAP Budget Nationally

SourceFundingPercentage
Title II ADAP (Federal):$167 million(43%)
State Funds:$109 million(28%)
Title II Base (Federal):$59.9 million(16%)
Title I (Federal):$22.7 million(6%)
Drug Rebates:$18.5 million(5%)
Insurance Recovery:$7.4 million):(2%)
Other:$.5 million(0%)
Total:$385 million(100%)

National ADAP Funding Source Changes Between 1996 and 1997

Funding SourceFY 1996FY 1997% Change
Title II Base (Federal):$58.2 million$59.9 million+3%
Title II ADAP (Federal):$52.0 million$167 million+221%
State Funds:$53.7 million$109 million+103%
Title I (Federal): $25.9 million$22.7million-12%
Drug Rebates: $11.9 million$18.5 million+55%
Insurance Recovery: $5.0 million$7.4 million+48%
Other: $0.8 million$0.5 million-37%
Total: $207.5 million$385 million+85%

Survey Results

The national ADAP budget increased by $177 million (85% growth) between FY 1996 and FY 1997. The two most significant developments in the national ADAP budget picture in FY 1997 were the substantial increase in dedicated ADAP supplemental funding ($167 million total, representing a 221% growth over the previous year) and the doubling of state general revenue contributions nationally ($109 million total reported to NASTAD/ATDN, representing a 103% growth over FY 1996).

Expected overall funding increases are highest in California ($49,053,839) and New York ($24,825,256). All but two states (Montana and New Hampshire) reported increases in overall ADAP budgets between FY 1996 and FY 1997. In Montana this was due to a reduction in state support (following a one-time-only emergency funding in FY 1996). In New Hampshire this was due to a reduction in ADAP support drawn from the stateís base Title II formula grant. Kansas reported only a 1% increase in its ADAP budget between FY 1996 and FY 1997 which resulted from a reduction in ADAP support drawn from its base Title II formula grant. Percentage increases in ADAP funding ranged from highs of 353% in Louisiana, 324% in Washington State, 268% in Oregon and 244% in Ohio to lows of 1% in Kansas, 3% in Wyoming, 10% in Idaho and 13% in Kentucky.

Congress appropriated an additional $115 million for Title II ADAP dedicated funding for FY 1997. ADAP supplemental funding has become the single most significant source of funding for most of the nationís ADAPs, representing 43% of the national ADAP budget in FY 1997. As a line item, it represents the majority of state ADAP budgets in 32 states; in three states (Iowa, Minnesota and Tennessee) ADAP supplemental funding represents 100% of the total ADAP budget.

Thirty states contributed state-specific funding to ADAPs in FY 1997 totaling $109 million and representing 28% of the national ADAP budget. California is expected to provide the most substantial level of funding from its state general revenue fund to ADAP ($40,159,000). Californiaís state ADAP contribution represents 46% of its total FY 1997 ADAP budget of $87,111,105. States which also have substantial estimated contributions from state general revenue funds to ADAP include: Louisiana ($16,000,000 ñ 83% of total ADAP budget); Washington State ($4,200,000 ñ 61%); Illinois ($8,325,000 ñ 57%); New Mexico ($740,000 ñ 55%); Pennsylvania ($4,612,723 ñ 47%); Massachusetts ($3,660,000 ñ 46%); Puerto Rico ($7,262,008 ñ 46%); Ohio ($3,000,00 ñ 45%); Texas ($2,697,376 ñ 16%); and New York ($12,400,000 ñ 15%).

Contributions from several states to ADAP have grown substantially between FY 1996 and FY 1997. Ohioís estimated state contribution to ADAP will grow 1400% from $200,000 to $3,000,000. Other states expected to experience significant growth in state funding for ADAP in FY 1997 include: Washington State (increase of $3,782,500 ñ 906%); Louisiana (increase of $12,684,926 ñ 383%); Massachusetts (increase of $2,560,000 ñ 233%); California (increase of $24,559,000 ñ 157%); Puerto Rico (increase of $3,855,357 ñ 113%); Illinois (increase of $3,125,000 ñ 60%); New York (increase of $4,000,000 ñ 48%); and South Carolina (increase of $150,000 ñ 43%). These states make up the vast majority of the increases in state funding for ADAP in the last year.

While the overall national ADAP contributions from states doubled, only one additional state (Vermont) that did not provide state funding for ADAP in FY 1996 has reported contributing to ADAP in FY 1997. The number of ADAPs reporting state contributions declined slightly from 34 in FY 1996 to 30 in FY 1997.

While at least 30 states are expected to provide funding for ADAP in FY 1997, at least 22 jurisdictions are not providing state funding or state contributions are currently uncertain for FY 1997. Five states (Connecticut, Delaware, Minnesota, Montana, and New Hampshire) that had provided state funding for ADAP in FY 1996 report no state contributions in FY 1997. In the case of Connecticut, this may be amended before the beginning of the state fiscal year. In the case of Montana, the FY 1996 funding was a one-time-only emergency appropriation. Clearly the substantial growth in overall funding from states to ADAPs nationally in FY 1997 must be tempered by the fact that this growth is largely occurring within states that have previously provided funding for ADAPs.

The most substantial percentage increases in support from base Title II grants in FY 1997 are reported in Louisiana (254%), Delaware (73%), Connecticut (71%) and Washington State (70%). States which rely the most heavily on base Title II grants to fund portions of their ADAPs are: North Dakota (74% of total ADAP budget); Montana (67%); South Dakota (63%); Mississippi (57%) and Alabama (52%).

Reported contributions from Title I EMAs to state ADAPs diminished nationally by 12% between FY 1996 and FY 1997. Thirteen states reported contributions from Title I EMAs in FY 1997 totaling $22.9 million nationally and representing 6% of the national ADAP budget. Oregon joined the list of states in FY 1997 with funding for its state ADAP from a Title I EMA (Portland). Illinois falls from the list in FY 1997 in reporting zero contributions to its state ADAP from Title I (Chicago). States reporting significant increased contributions from Title I EMAs in FY 1997 include: Colorado (230%), Massachusetts (186%), New Jersey (63%) and Texas (61%). Diminished contributions were reported in Georgia (-6%), Illinois (-100%), Maryland (-4%), New York (-24% -- $4.8 million), and Washington State (-51%). Despite the decreased support by EMAs in New York State (due to reductions in federal funding), New Yorkís EMAs make up two-thirds (66%) of the national Title I contribution to ADAPs.

Twenty-one states continued to report revenue from drug manufacturer rebates in FY 1997 totaling nearly $18 million and representing 5% of the national ADAP budget. Remaining high on the list were New York ($8,380,000) and California ($7,919,000) in expected increased recovery of costs through rebates in FY 1997.

Trends in Clients Served and Expenditures

Overview

In gauging state ADAPsí response to the emergency in funding and access to HIV/AIDS therapies, NASTAD/ATDN asked states to detail recent trends in program enrollment, clients served and expenditures. NASTAD/ATDN requested that states report program data gathered in the months of July and December 1996. A significant number of states were unable to provide reliable figures on their total monthly enrollment for this survey. Some states do not track overall enrollment in a given month, but track unduplicated enrollment based on a six-month or annual period. Some statesóespecially those with decentralized program administrationóexperience significant reporting delays on enrolled clients from the local/regional ADAP-administrating agencies. States are required to report annual unduplicated ADAP client enrollment to HRSA as part of the Annual Administrative Report (AAR), but are not currently required to maintain a tally of enrollment on a month-to-month basis.

It is an increasingly accepted observation that program enrollment in a given month is not a reliable indicator of potential program utilization. In many states, the number of clients utilizing services within a given month is usually fifty percent or less of the total enrollment for that month. However, this percentage varies from state to state and is subject to a number of variables, including the number of days/months for which a prescription may be filled (and therefore the number of times within a given set of months that a client may need to use program services).

Based on the variability of enrollment figures, their apparent lack of correlation to actual clients served and the inability of a significant number of states to provide monthly enrollment totals, an analysis of program enrollment trends is not feasible in this report. The authors contend that monthly-clients-served figures, viewed over the course of several months, are a more reliable indicator of actual ADAP program growth trends than program enrollment totals. Therefore, the analysis presented in this section will focus on trends in monthly clients served and expenditures.

Survey Results

States were asked to provide the total number of ADAP enrollees, the total number of utilizing ADAP clients and total monthly expenditures on pharmaceuticals for the months of July 1996 and December 1996. A ìutilizing clientî was defined as a client who received at least one prescription through the program during the given month. Actual and percentage increases/decreases in clients served and expenditures were calculated over the six month period. State responses are presented in the table beginning on the following page. ADAP Client Utilization and Expenditures in July 1996 and December 1996

Forty-two states (80%) reported increases in the total number of utilizing clients from July 1996 to December 1996. Twenty-one states (40%) reported a twenty percent or more increase in the number of utilizing clients and six states (12%) reported a fifty percent or higher increase in utilizing clients. Ten states (19%) reported a decrease in utilizing clients and one state (Idaho) reported no change in the number of clients served.

Forty-four states (85%) indicated increased monthly expenditures in December 1996 as compared to July 1996. Thirty-two states (62%) showed a twenty percent or higher expenditure increase and fourteen states (27%) reported a fifty percent or higher increase in expenditures.

Seven states (13%) showed decreased expenditures in December while one state (Wyoming) reported no difference in the expenditure amounts for July and December. Alaska, Louisiana and Missouri established new ADAP programs during mid to late 1996. Therefore, there is no utilization or expenditure data from July 1996 for these programs.

Iowa, North Dakota and Rhode Island reported slight drops in the number of utilizing clients in December 1996 compared to July 1996 but experienced increases in program expenditures. Conversely, the District of Columbia reported an increase in utilizing clients and a decrease in expenditures during this same period. Idaho reported an equal number of utilizing clients for both months but a significant increase (133%) in program expenditures. The following factors may have contributed to the lower utilization numbers reported by these and a few other states: program enrollment caps (Illinois, Kansas, Montana, Nevada, Wyoming), lowering of program financial eligibility thresholds (Illinois, Nevada), and nominal, monthly fluctuations in clients served among programs in states with relatively small ADAP client populations (Iowa, Maine, New Hampshire, North Dakota, Rhode Island).

Clients Served and Expenditure Trends

Nationally, states reported that 31,371 clients used ADAP services during July 1996 while 38,500 used ADAP services during December 1996. This represents a twenty-three percent (23%) increase in the number of utilizing clients from July 1996 to December 1996. Data from a previous survey conducted by NASTAD indicated that state ADAPs served approximately 21,807 clients during January 1996. This represents a seventy-seven percent (77%) increase in clients served over the twelve months of 1996, or an average net increase of approximately 1,400 clients served each month. Monthly program expenditures increased from a total of $14,907,699 in July 1996 to $20,423,634 in December 1996, representing a thirty-seven percent (37%) increase in expenditures nationally during the second half of calendar year 1996.

From the data collected, it is unclear how many new clients have begun utilizing ADAP services or how many enrolled clients who previously did not utilize services began to have prescriptions filled through ADAP. It is also unclear how long clients remain enrolled as active utilizers in ADAP programs. What is clear from the data, however, is that there have been very significant increases in the total number of clients served and in total program expenditures nationally over the course of calendar year 1996.

Emergency Cost-Containment Measures

Despite the growth in ADAP budgets, the increase in client demand and expenditures detailed in the survey have led numerous states to take emergency measures in order to sustain coverage of existing clients or make available newer antiretroviral agents. Thirty-five states (67%) reported taking at least one emergency measure in the last year in response to the precipitous increase in the number of ADAP clients and costs and increased demand for combination therapies. Among the major emergency actions reported by state ADAPs were:

Seventeen states transferred funds from other service categories to ADAP. The states are Alaska, Arizona, Colorado, District of Columbia, Illinois, Kansas, Louisiana, Maine, Massachusetts, Mississippi, New Mexico, New York, South Carolina, Texas, Utah, Washington State and West Virginia.

Sixteen states instituted formal or informal waiting lists for access to their ADAPs and/or specifically for access to protease inhibitors. The states reporting formal or informal waiting lists are Alabama, Alaska, D.C., Georgia, Indiana, Kentucky, Maine, Montana, Missouri, Nevada, Oklahoma, South Carolina, South Dakota, Vermont, Virginia and Wyoming.

Thirteen states capped ADAP client enrollment. The states are Alabama, Alaska, Arkansas, D.C., Georgia, Indiana, Kansas, Montana, Nevada, South Carolina, South Dakota, Washington State and Wyoming. Capped enrollment was reported to be still in effect in nine of the thirteen states including Alabama Alaska, D.C., Georgia, Indiana, Montana, Nevada, South Carolina, and South Dakota.

Fifteen states capped or restricted access to protease inhibitors for active clients. The states are D.C., Florida, Georgia, Illinois, Kansas, Kentucky, Maine, Mississippi, Missouri, New Hampshire, Oklahoma, Tennessee, Vermont, Virginia and Washington State. These restrictions were reported to be still in effect in ten of the fifteen states, including D.C., Florida, Georgia, Kentucky, Maine, Mississippi, Missouri, Oklahoma, Tennessee and Vermont.

Eleven states reduced ADAP drug formularies. The states are D.C., Illinois, Indiana, Mississippi, Nebraska, New Jersey, New York, South Dakota, Texas, Vermont and Virginia. These reductions were reported to be still in effect in nine of the eleven states, including D.C., Illinois, Indiana, Mississippi, New Jersey, South Dakota, Texas, Vermont and Virginia.

Seven states capped or restricted access to other formulary drugs. The states are Georgia, Indiana, Kansas, New Hampshire, Oklahoma, Texas and Washington State. These restrictions were reported to be still in effect in five of the seven states, including Georgia, Indiana, New Hampshire, Oklahoma and Texas.

Seven states revised ADAP financial eligibility criteria by lowering income levels. The states are Alabama, D.C., Illinois, Kentucky, Massachusetts, Nevada and Utah. These revised criteria were reported to be still in effect in five of the seven states including D.C., Illinois, Kentucky, Massachusetts and Nevada.

Six states canceled planned drug formulary expansions. The states are Alabama, Illinois, Mississippi, Nevada, New Jersey and West Virginia. These expansions remain on hold in four of the six states including Mississippi, Nevada, New Jersey and West Virginia.

ADAP Budget Shortfalls

Survey Results

NASTAD/ATDN asked states if they expect to encounter a shortfall in their ADAPs before the end of the Ryan White Title II FY 1997 budget period which began on April 1, 1997 and which ends March 31, 1998. Despite the emergency measures undertaken to prevent funding shortages, eleven states (21%) responded that they predict a shortfall in FY 1997. The states reporting anticipated shortages are Alabama, Arizona, Arkansas, Colorado, Montana, New Mexico, Puerto Rico, Texas, Vermont, Washington State and West Virginia. Anticipated shortages reported by the eleven states total over $8.5 million in FY 1997.

It is important to note that some respondents are reluctant to report anticipated shortfalls in ADAP budgets since some state laws/regulations prohibit overspending of federal or state resources. In addition, state administrations may not wish to publicize program shortages before making formal appeals to state legislatures for increased appropriations. Instead, some states will scale back ADAP services ñ by limiting enrollment or drug coverage ñ rather than report budget shortfalls. Several states, including Florida, Mississippi and South Dakota, have recently been forced to severely limit access to their ADAPs or substantially cut back on client services in order to sustain limited program operations for the coming year.

Additionally, every state has recently received significant infusions of Ryan White Title II base and/or supplemental funding with which to implement programs in FY 1997. It may be too early to tell which programs will experience overwhelming demand and costs that may result in additional reported shortfalls in FY 1997. Several factors may hasten additional states to report shortages before the end of 1997. These include: 1) failure to obtain proposed state and other funding increases for ADAPs; 2) approval of additional high-cost HIV/AIDS therapies before the close of the fiscal year; and 3) the impact of federal HIV clinical practice guidelines which will likely drive demand for programs to offer more expanded treatment options to meet current treatment standards.

Accessibility of State ADAPs Nationally

Overview

This section examines the eligibility criteria states establish for client entry into ADAPs based on financial and medical need, as well as the extent of pharmaceutical drug coverage across the states. The findings show that many states have been forced to limit or cap new enrollment in their programs and/or restrict access to promising new drug therapies. Many individuals are turning to ADAPs with renewed hope, only to find the doors closed due to a lack of sufficient resources.

Program Eligibility Criteria

Overview

Eligibility criteria for enrollment in ADAPs are developed by each state and, therefore, vary from program to program. Eligibility criteria are established at the local level within the guidelines established by the Ryan White CARE Act. Eligibility criteria generally fall into two broad categories: financial eligibility and medical eligibility. Some ADAPs, however, have developed additional eligibility requirements for access to specific formulary drugs. All of these factors contribute to a picture of uneven access to ADAPs across the nation.

Financial Eligibility Criteria

The majority of ADAPs use the federal poverty guidelines (see Appendix III for the current federal poverty guidelines) when assessing financial eligibility. The exceptions are Maryland, Massachusetts, New Jersey, New York, Pennsylvania and Puerto Rico. These programs have specific income criteria that do not change annually as is the case with the federal poverty guidelines. Montana requests that an applicant provide evidence that the cost of the covered medications will create a severe financial burden on his/her household.

All other programs specify a percentage of the current federal poverty guidelines for determining financial eligibility. These percentages can be absolute, or eligibility can be tiered to allow sliding-scale co-payments based on how the applicant's income equates with the federal poverty guidelines. Some programs will take into account out-of-pocket medication expenses when determining income, a practice known as "spenddown."

For example, the ADAPs with the most restrictive income criteria are Arkansas and Utah, which specify an income below 100% of the federal poverty guidelines for full admission to their programs. This would currently mean an annual income of $7,890 or less for one person. However, Arkansas takes into account medical expenses when assessing financial eligibility for their program. Utah operates a sliding scale co-payment system which charges 1.5% to 50% of the cost of service, depending how much over 100% of federal poverty the applicant earns.

Other programs with a low financial threshold for admission are Georgia and North Carolina, both requiring an income at or below 125% of federal poverty. In both states, this requirement is absolute and there is no provision for sliding scale co-payments or the consideration of out-of-pocket medical expenses. This is in contrast to the next most restrictive states, North Dakota and Oklahoma, which both require income to be at or below 150% of federal poverty. North Dakota allows sliding scale co-payments up to 200% of federal poverty. Oklahoma allows out-of-pocket medication costs to be taken into account when determining income. Florida reports that the income requirement for their program is 200% of federal poverty, but notes that applicants with incomes between 100% and 200% of federal poverty will be assessed for a sliding scale co-payment.

At the opposite end of the spectrum, ADAP programs in California, Hawaii, Idaho and Rhode Island require an income at or below 400% of federal poverty. California allows people earning more than this to make a sliding scale co-payment based on their annual state income tax liability and family size, up to a ceiling of $50,000 per year. However, it has been observed that even in states that have more generous eligibility criteria, the majority of ADAP clients are earning less than 200% of federal poverty.

Ten ADAPs have restrictions on liquid assets as part of their financial eligibility criteria. These are Hawaii, Kentucky, Louisiana, Minnesota, Nevada, New Mexico, New York, Oregon, Tennessee and Washington. Louisiana and Nevada specify liquid assets of less than $4,000 for admission into the program. In Tennessee the asset threshold is $8,000. In Hawaii, Kentucky, New Mexico and Washington the limit is $10,000. Oregonís ADAP uses $20,000 as its maximum allowable assets. Minnesotaís and New Yorkís ADAPs have the most generous allowable asset limit, at $25,000 or less.

The documentation required by ADAPs to prove income and assets varies from program to program, but typically involves standard paperwork such as W-2 forms, tax returns, recent pay stubs, entitlement award letters and current bank statements.

Medical Eligibility Criteria

The basic medical criteria for enrollment into any ADAP is a diagnosis of HIV infection. Alabama, Florida, Georgia, Idaho, Indiana, Mississippi, Nevada and South Carolina also require that an applicant have a CD4 cell count of less than 500, although this can be waived for pregnant women and neonates needing AZT. South Carolina also notes that the CD4 requirement can be waived but does not specify under which circumstances.

Kentucky currently requires a CD4 count of under 550 or a history of confirmed pneumocystis carinii pneumonia for enrollment in the program, although again this can be waived for pregnant women and neonates. Iowa requests that applicants have a recent CD4 count result available, but there is no specific CD4 requirement for entry into the program.

A new prognostic laboratory test known as the HIV viral load test is also now being used to determine medical eligibility for some ADAPs. The viral load test measures the amount of viral genetic material, known as HIV RNA, in a blood sample. Maine states that a CD4 count of under 400 or a viral load test result of over 20,000 copies is required for admission into the program. Mississippi requires a CD4 count under 500 or a viral load test result of over 30,000 copies. Puerto Rico specifies that the CD4 count be under 500 or the viral load be over 10,000. Louisiana and Virginia require that new applicants have a recent viral load test result available but there is no specific viral load requirement for entry into these programs.

Alaska, Arkansas, California, Colorado, Connecticut, Maryland, Minnesota, Montana, Oklahoma, Pennsylvania, South Dakota and Wisconsin all require that an applicant have a prescription for a covered drug before being enrolled in ADAP.

Additional Eligibility Criteria

The majority of ADAPs require that an applicant be a resident of the state. North Dakota specifies that the applicant must have been a state resident for at least 30 days. New Mexico further requires that an applicant also be a ìresidentî of the United States. There is one exception to this general state-residency requirement: Minnesotaís ADAP will accept applicants from two Title I EMA counties in Wisconsin.

Wisconsin requires that an applicant has applied foróand has been deniedómedical assistance during the 12 months prior to the date of his/her ADAP application. Michigan requires a Medicaid denial from within the past 60 days. Illinois is considering requiring evidence of denial from the Medicaid program from all ADAP applicants.

Minnesotaís ADAP will cover an individual with existing third-party insurance only if the individualís insurance plan requires the individual to pay more than 20% of the cost of each prescription, or more than $15.00 per prescription. Illinois ADAP requires that an applicant's private insurance must cover less than 80% of their prescription medications (i.e., that the individual is responsible for more than 20% of prescription costs). Arkansasí ADAP specifies that applicants have no third-party insurance that pays for more than 50% of the cost of any ADAP-covered medication.

ADAP Drug Formularies

Overview

States determine both the number and type of drugs that are available on their state ADAP formulary. Hence, there is a significant variation in the size and composition of ADAP formularies from state to state. ADAP formulary drugs fall into two main categories: antiretrovirals, which target HIV directly, and drugs to treat and/or prevent opportunistic infections.

Many state ADAPs also have advisory committees that assist them in crafting the ADAP drug formulary and, in some cases, that also provide input on broader ADAP policy issues. The composition of these advisory committees is determined locally. The Division of HIV Services (DHS) at HRSA has recently encouraged state ADAPs to utilize advisory committees in their decision making processes, especially since many of the programs are faced with making difficult medical and ethical decisions.

Survey Results

State ADAPs were asked to provide a copy of their most recent formulary, along with information on access criteria for specific formulary drugs, if applicable. States were also asked whether they have an ADAP advisory committee that has input into the formulary decision-making process. States with ADAP advisory committees were asked to describe the composition/membership of their advisory committees.

New York's ADAP offers the most comprehensive formulary, totaling 214 drugs, hepatitis vaccines and a variety of nutritional supplements and vitamins. This is commensurate with having the largest budget of any ADAP after California. At the other end of the spectrum is Louisianaís ADAP which reports that it covers only the three approved protease inhibitors. However, an additional HIV drug formulary has been available to low income state residents through several ambulatory care sites throughout the state, provided under the auspices of the Louisiana Health Care Authority (LHCA). There are plans to combine the state-funded LHCA program with the federally-funded ADAP in order to provide a more uniform HIV pharmaceutical assistance program for people living with HIV in Louisiana. For a full listing of ADAP drug coverage state-by-state, see Appendix V.

Although HIV incidence within a state, number of clients served and total budget might be expected to impact upon the comprehensiveness of an ADAP drug formulary, this is not always the case. North Dakota currently offers one of the largest formularies in the nation, although it has the smallest budget of any ADAP. North Dakota also served just fourteen clients during January 1997, making it the second smallest program after Alaska in terms of clients served.

Coverage of Antiretrovirals

The great leap forward in HIV/AIDS treatment witnessed over the past year has been driven largely by the advent of combination anti-HIV regimens containing protease inhibitors. At the time of our survey, three protease inhibitors were commercially available: saquinavir (Invirase), ritonavir (Norvir) and indinavir (Crixivan). Saquinavir was approved in December 1995, with ritonavir and indinavir gaining FDA licensing in March of 1996. On March 14, 1997, following the completion deadline for the ADAP survey, a fourth protease inhibitor, nelfinavir (Viracept), received FDA approval.

Four state ADAPs report that they do not cover any protease inhibitors: Arkansas, Nevada, Oregon, and South Dakota. Arkansas notes that formulary expansion is planned, but mentions no specific date. Nevada is considering adding new drugs if state funding can be secured. Oregonís ADAP reports that formulary expansion may be possible if the ADAP can successfully move more ADAP clients on to more comprehensive health insurance coverage. South Dakota estimates that the program would require an additional $150,000 a year in funding to provide protease inhibitors to eligible clients.

Several states do not offer the three protease inhibitors approved at the time of the survey. Delaware reports that indinavir will be added when it is "commercially available." This is presumably a reference to the fact that the drug is currently available nationally through only one mail order pharmacy, Stadtlanders, located in Pittsburgh, PA. Idaho covers only indinavir. Mississippi covers only saquinavir. Virginia reports that only one protease inhibitor, indinavir, is covered on the formulary, but other protease inhibitors can be made available if an individual cannot tolerate or becomes resistant to indinavir.

Nelfinavir became the fourth FDA approved protease inhibitor on March 14, 1997, following the deadline for completion of the survey. Preliminary data from other sources indicate, however, that currently, approximately 28 ADAPs (54%) have added nelfinavir to their formulary.

All ADAP programs, with the exception of Louisiana, offer all five approved nucleoside analog antiretroviral drugs: zidovudine (AZT, Retrovir), didanosine (ddI, Videx), zalcitabine (ddC, HIVID), stavudine (d4T, Zerit) and lamivudine (3TC, Epivir), although some programs may restrict access to these drugs based on specific medical criteria. As previously noted, a separate state program can provide these drugs through several ambulatory care sites in Louisiana.

A new class of anti-HIV drugs known as non-nucleoside reverse transcriptase inhibitors (NNRTIs) have also recently become more widely available. There is currently only one approved NNRTI, nevirapine (Viramune). Since its approval in June of 1996, twenty-six ADAPs have added the drug to their formularies. Three states responded that nevirapine was currently under consideration for addition to their formulary.

Drugs for the Treatment and Prevention of Opportunistic Infections

Drugs for the treatment and prevention of opportunistic infections (OIs) have significantly improved the length and quality of the lives of people with AIDS. The preventive treatments available for pneumocystis carinii pneumonia (PCP), for example, have dramatically extended survival after an AIDS diagnosis.

Most ADAPs offer some of the available OI drugs, but it is in this category of drug coverage that the widest variability is found across the states. The reauthorized Ryan White CARE Act explicitly stipulates that efforts be undertaken at the Federal level to ensure that ADAPs offer comprehensive coverage of OI drugs.

In 1995, the Infectious Disease Society of America (IDSA) in conjunction with the U.S. Public Health Service (PHS) issued Guidelines for the Prevention of Opportunistic Infections in Persons Infected with Human Immunodeficiency Virus. The drugs referenced in these guidelines as "strongly recommended" for the prevention of OIs include TMP/SMX, dapsone, pentamidine, pyrimethamine, leucovorin, sulfadiazine, clindamycin, fluconazole, itraconazole, isoniazid, foscarnet, ganciclovir and acyclovir. Currently, five ADAPs (10%) report that they have these drugs available on their formularies: Illinois, New York, North Dakota, Pennsylvania and Wyoming. A revised, updated ISDA/PHS document was released on June 27, 1997 containing 14 drugs which are strongly recommended for the prevention of OIs. Two ADAPs ñ New York and Illinois ñ report that they have all of these drugs available on their formularies.

Currently, there are three drugs approved for the prevention of another common OI, Mycobacterium avium complex (MAC): rifabutin, clarithromycin and azithromycin. All of these treatments have demonstrated a clear ability to prevent MAC and two have also been associated with a distinct survival benefit. Thirty programs (58%) cover all three of these drugs. Five ADAPs offer two of these drugs while six ADAPs cover only one.

Medical Criteria for Access to Formulary Drugs

Sixteen states (31%) report that they have established specific medical criteria for access to certain formulary drugs. These criteria commonly take the form of specific diagnoses or laboratory values (e.g., CD4 counts, viral load levels). Medical access criteria and other formulary restrictions are presented for each state ADAP in Appendix VI.

Antiretrovirals

Several states have specific medical criteria for access to protease inhibitors and other antiretroviral treatments. Georgia requires a CD4 cell count under 100 for access to protease inhibitors. Kentucky specifies under 200 CD4 cells, a viral load of over 10,000 and failure of prior combination reverse transcriptase inhibitor treatment for access to their protease inhibitor pilot program. Florida requires a CD4 cell count of under 350 and a viral load of over 10,000 for protease inhibitors. Idaho offers one protease inhibitor, indinavir (Crixivan), and requires prior failure of double combination reverse transcriptase inhibitor therapy before granting access to this drug.

Puerto Rico limits protease inhibitors to those with a CD4 count under 500 and a viral load of over 10,000. Virginia uses the same criteria but specifies CD4 less than 500 or viral load greater than 10,000. Tennesseeís ADAP follows guidelines promulgated by TennCare, their statewide managed care program. These guidelines state that antiretroviral therapy is appropriate if the CD4 count is under 500 and the viral load is over 5,000, or if the CD4 count is over 500 and the viral load is over 30,000. Texas uses solely a viral load criteria of over 10,000 for protease inhibitor treatment.

Opportunistic Infection Prophylaxis and Treatment

Fifteen ADAP programs (29%) also have developed medical criteria for access to certain OI drugs. These criteria commonly are based upon FDA-approved drug labeling (e.g., a drug may be indicated for the prophylaxis of a particular OI in a person who has a particular CD4 count). Some ADAPs limit access to certain OI drugs by only reimbursing the cost of the drug if it is used in acute treatment, not prophylaxis. For example, Delaware, Illinois, Kansas, Mississippi and Texas ADAPs will not pay for prophylactic use of the drug ganciclovir. Massachusetts, Michigan, Mississippi, Nevada and Texas ADAPs will not pay for prophylactic use of the drug fluconazole.

ADAP Advisory Committees

Forty-six states (88%) report that they have a formal ADAP advisory board in place. Alaska, Kentucky, Montana and Wisconsin report that they use an informal advisory network. Kentucky indicates that its informal advisory network includes physicians, community-based organizations and people living with HIV and that it finds the informal system to be more efficient than regularly convening a formally appointed group. Louisiana and Tennessee reported that they do not have an ADAP advisory board.

Physicians are represented on ADAP advisory committees in forty-five states (87%). Vermont ADAP reports that no physicians sit on its advisory committee (the committee, however, does include pharmacists, people living with HIV and ADAP consumers). People living with HIV/AIDS are represented on advisory committees in thirty-nine states (75%). The following table details the overall representation of various groups on ADAP advisory committees:

Category No. of Advisory Committees
Physicians45
People Living with HIV/AIDS39
Pharmacists34
State Governmental Representatives42
ADAP Consumers42
Representatives from Ethnic/Racial Minorities19
Other* 19

* Advisory group members in the "Other" category include: Title I Administrators, Ethicists, Case Managers, Nurse Practitioners, Substance Use program staff, ADAP staff, Academics, Title II Administrators and Medicaid representatives.

Community Outreach Strategies

The degree to which ADAPs conduct outreach efforts in local communities to reach potential clients may have an impact on the accessibility of the program, especially for traditionally underserved populations. States were asked to indicate, in general terms, whether they conduct outreach efforts to make potential clients aware of ADAP and, if so, to include information on special outreach efforts to racial/ethnic minority populations and women, if applicable.

Thirty-five states (67%) report conducting outreach to publicize their ADAP. The methods used vary, but commonly include distribution of information (in the form of flyers, brochures, informational letters, etc.) through local providers, including diverse community-based organizations, consortia, medical providers and health clinics. New Yorkís ADAP indicated that it also utilizes television and radio advertising, and Ohio is developing a video to promote the program.

Selected outreach strategies of state ADAPs include using local press outlets (including newspapers with a specific ethnic audience) to make potential clients aware of the program. New Yorkís ADAP also has ADAP brochures in several languages, bilingual outreach staff and a contract with the Inter-Council of Community Fellowship in Harlem to provide outreach to specific minority communities. Marylandís ADAP sets up exhibits at ethnic and cultural fairs/festivals to further publicize the program. Washington Stateís ADAP extends its outreach efforts through cooperation/participation in the National Minority AIDS Council/ People of Color Against AIDS Network PCP prevention campaign. Alaska and Nebraska publicize their ADAPs through grantees serving minority populations.

New Mexico runs a coordinated outreach effort to women that spans several public health programs that includes ADAP. This outreach program utilizes an advisory committee that includes community representation. Mississippi conducts specific outreach to women through community health clinics. New Yorkís and Wisconsinís ADAPs also conduct specific outreach programs that are targeted to women.

Barriers to Serving Potential Clients

Background

ADAPs, by statute, are intended to provide pharmaceutical assistance to low income, uninsured and underinsured individuals. This may include lower-income individuals who have either no private insurance coverage, inadequate prescription coverage through their private insurance (e.g., prescription caps), individuals who do not meet the financial or disability criteria for Medicaid, and/or individuals who may be ineligible for Medicaid due to other factors (e.g., immigration status, homelessness, substance abuse). There has been little effort in the past to identify the barriers that ADAP programs face in attempting to serve intended client populations. Most previous analyses of ADAP programs have focused solely on funding-related issues. However, there are additional barriers that may limit an ADAPís ability to adequately provide services to the populations they are intended to serve.

Survey Results

States were asked to list the barriers, in order of severity, that impact on their ability to serve intended client populations. Similar responses were collapsed into single categories; identified barriers listed by only one state each were collapsed into the category of ìother.î Responses are summarized below:

Identified BarriersNumber of States% of States
Inadequate Funding2445%
Administrative Issues (e.g., lack of automation, inadequate staffing, etc.)611%
Lack of Adequate Service Coordination (e.g., with case managers or other service providers, especially in rural areas of the states)611%
Lack of Adequate Coordination with the State Medicaid Program48%
Other611%
None Identified713%

Twenty-four states indicated that inadequate funding is the primary barrier to their ADAPís ability to serve intended client populations. Six states cited various administrative issues as another barrier to adequate service delivery and six indicated that lack of adequate service coordination with other providersóespecially in rural areasówas a barrier to the adequate provision of service. Four states identified lack of coordination with the state Medicaid program as a barrier and six states named other factors as barriers to service provision. Seven states identified no barriers to service. Eleven states did not respond to this question.

Several states also expressed difficulty in defining what is meant by ìadequately serving intended client populations.î There are currently no national projections of the potential universe of ADAP clients who could be served in the absence of the identified barriers. According to the Centers for Disease Control and Prevention (CDC), twenty-eight states collect data on HIV infection rates in addition to AIDS cases, and two of these states only collect information on new HIV infections for infants. The lack of sufficient data on reported HIV infection in all states, in addition to a lack of a current and complete assessment of the numbers of HIV-infected individuals and individuals with AIDS who have adequate private insurance and/or Medicaid, makes a precise estimate of the potential ADAP client population problematic.

A gross estimate of potential demand for ADAPs nationally, however, can be extrapolated from existing published data sources. CDC estimates that there were 650,000-900,000 individuals with HIV in the U.S. in 1992. Based on a 1994 published study on AIDS cost and services utilization (ACSUS) from the federal Agency for Health Care Policy Research (AHCPR), approximately 21.4% of persons with symptomatic HIV disease receiving care in the U.S. have no health insurance coverage. This population would represent those for whom triple therapy would be uniformly recommended and who would generally be eligible for an ADAP program (although no income information is available). This number is likely an underestimate of those who are uninsured who would be eligible for HIV therapy and does not include any estimates of the number of underinsured. This number is likely an overestimate of those who are aware of their HIV status and in care. Based on these estimates, between 140,000 to 280,000 individuals could potentially be eligible for the ADAP program. This number represents a two- to four-fold increase from the current estimate of 80,000 clients being served nationally on an annual basis.

Reevaluating ADAP Program Structures and Strategies

Overview

In the midst of rapid changes in budgets, program eligibility and drug coverage, state officials have also sought to improve ADAP program structures and strategies. Many states reported that they have examined and re-examined such basic yet complex areas as how their ADAPs are administered, how drugs are purchased and distributed to clients, and how costs can be reduced.

Program Administration

Background

The Ryan White CARE Act allows states significant flexibility in structuring the underlying administrative structure of their ADAP programs. This flexibility has resulted in varying administrative structures across state ADAPs. However, these basic variations in ADAP program administration generally fall into one of three broad categories: centralized, decentralized and contracted out.

Centralized: ADAPs in this category are administered out of a central state agency, usually the state health or social/human services department.

Decentralized: ADAPs in this category are generally administered through local consortia or county health departments. These entities receive sub-grants from the state to administer the day-to-day activities of the ADAP at a local/regional level. The state continues to maintain a large role in the oversight of the program carried out at the local level.

Contracted Out: ADAPs in this category are generally administered by a private or public agency (e.g., a public hospital or a community-based organization) through a contract/grant with the state. There is minimal state involvement in the day to day operations of the program.

Survey Results

The survey asked whether states administer their ADAP centrally, de-centrally, contract-out the day-to-day administration of the program, or use some other administrative mechanism. Results are presented in the Table on the following page.

Of the fifty-two state ADAPs responding to this survey question, thirty-six states (69%) indicated that they centrally administer their ADAP program. Six states (12%) indicated that their programs are administered through a decentralized mechanism, seven states (13%) contract out the administration of their ADAPs, and three states (6%) indicated that their programs are administered through other mechanisms. To illustrate the variety of responses: New York administers its ADAP program centrally through the state health department; Arkansas provides grants to local consortia to administer ADAP at a regional level; Indiana contracts out the administration of its ADAP to the Indiana Community AIDS Action Network (ICAAN); and Delaware administers part of its ADAP grant centrally, while contracting out a large portion of the grant to the Medical Center of Delaware.

pie chart

Another survey question asked whether states had any plans to change the administration of their ADAPs. Forty-five states (87%) have no plans to change the administrative structure of their programs, while the remaining seven states (13%) are planning to alter their programís administrative structure. Of these seven states, five (Arizona, California, Missouri, Puerto Rico and West Virginia) plan to move from a decentralized or contracted-out program to a centrally administered program.

Drug Purchasing And Distribution Systems

Background

The drug purchasing and distribution systems of state ADAPs have been under increasing scrutiny from Congress, the Administration and HIV/AIDS advocacy organizations over the past several months. The heightened interest is due in large part to the fact that the drug purchase and distribution system used by a state ADAP has a direct impact on the ADAPís ability to take advantage of the various drug discounting mechanisms which are available to the programs. The more money an ADAP can save through discounted purchasing arrangements or rebates, the more money there is available to potentially expand the ADAP drug formulary and/or to expand program eligibility to serve more clients. In order to serve increasing numbers of potential clients while covering new and promising therapies (protease inhibitors in particular), many states have been obliged to carefully evaluate their drug purchasing and distribution systems in order to meet these challenges with finite resources.

The methods that states use to purchase formulary drugs may be classified generally as follows:

Direct Purchasing: The state ADAP purchases drugs centrally by itself, or through a state pharmacy, purchasing agent or public agency/hospital.

Indirect Purchasing: The state ADAP contracts with a pharmacy network/mail order pharmacy/pharmacy benefits management company (PBM) for the purchase of drugs and subsequently reimburses the purchasing entity.

State ADAPs that purchase drugs directly usually have a centralized mechanism for dispensing drugs to clients. For example, drugs purchased through a central state pharmacy may be distributed through a network of local public health clinics/hospitals, sent directly to clients or distributed through clients' physicians. These "direct purchase" ADAPs participate in federal discount drug pricing programs such as Section 602 of the Veteran's Health Care Act. Another mechanism for drug distribution that states employ is to allow ADAP eligible clients to obtain drugs through their neighborhood drug store or local pharmacy networks. These "indirect purchase" ADAPs may in turn obtain rebates from pharmaceutical manufacturers in order to achieve cost containment and recovery. All states currently report using one or more cost containment measures ñ which include use of purchasing discounts, rebates or other cost savings mechanisms ñ or are making progress toward achieving the lowest possible costs for formulary medications. This will be discussed in more detail in the section on cost containment strategies.

Survey Results

States were asked whether they purchased formulary drugs directly, indirectly or through some other method. Responses are summarized in the table on the following page. Eighteen states (35%) indicated that they purchase drugs directly, twenty states (38%) responded that they purchase drugs indirectly, and fourteen states (27%) responded that they use another method to purchase formulary drugs. Of the fourteen states that indicated they used another drug purchasing method, all use some version of the indirect purchase method or a combination of direct and indirect purchasing (e.g., in Maryland and Kentucky), ADAP clients choose their own pharmacies and the ADAP programs reimburse the pharmacies at a set rate for covered drugs, but there is no formal contract between the programs and the pharmacies; in Iowa and Arkansas, each regional consortia contracts with its own pharmacy provider; and in Delaware, drugs are purchased both directly by the state and indirectly through local pharmacies.

Purchasing MethodNumber of StatesStates
Direct18Alabama, Arizona, Colorado, District of Columbia, Florida, Georgia, Hawaii, Louisiana, Mississippi, Nebraska, Nevada, New Mexico, Oregon, Puerto Rico, South Carolina, Tennessee, Texas, Virginia
Indirect20Alaska, Connecticut, Idaho, Illinois, Indiana, Kansas, Maine, Michigan, Minnesota, Missouri, Montana, New Hampshire, New York, Ohio, Oklahoma, South Dakota, Vermont, Washington, West Virginia, Wisconsin
Other14Arkansas, California, Delaware, Iowa, Kentucky, Maryland, Massachusetts, New Jersey, North Carolina, North Dakota, Pennsylvania, Rhode Island, Utah, Wyoming

States were also asked how purchased drugs are distributed to ADAP clients. State ADAP drug distribution mechanisms are listed below, in order of frequency used:

Multiple pharmacy sites 31 states
County/local health clinics 6 states
Mail order pharmacy 15 states
Via mail from a state pharmacy/state contracted pharmacy 10 states
Public hospitals 6 states
Clientís physicians 5 states
Other 5 states
Only one pharmacy site 2 states

Many states use multiple distribution mechanisms (e.g., multiple pharmacy sites and mail order). However, some states use only one mechanism: Illinois, Maine, Ohio and Oklahoma use a mail order pharmacy as the sole drug distributor; Florida distributes drugs to ADAP clients only through local public health clinics; Alabama ships drugs to clients via mail from a state-contracted dispenser.

States were asked whether they had plans to change their ADAP drug purchasing and distribution systems. Forty-five states (83%) responded that they have no plans to modify their current drug purchasing and distribution systems. Nine states (17%) indicated that they are in the process of, or considering, changing these systems. Connecticut, Kentucky, West Virginia and Wyoming are considering using a mail order pharmacy to purchase and distribute drugs. Oregon is considering contracting with a pharmacy benefits management company (PBM) while California is actively soliciting proposals from PBMs to coordinate ADAP drug purchasing and distribution statewide.

Cost Containment Strategies

Background

Many of the cost containment strategies employed by state ADAPs are related directly to their drug purchasing and distribution systems or to the drug distribution process. In fact, the way an ADAP purchases and distributes covered pharmaceuticals has dictated the basic type of cost-savings strategy that the ADAP may utilize. There are two primary ways that an ADAP can obtain reduced costs on drugs that it purchases for distribution to clients: through discounted drug pricing at the time of purchase as provided for under section 602 of Veterans Health Care Act, or through voluntary manufacturersí rebates.

The 602 Program

Section 602 of the Veteranís Health Care Act stipulates that state ADAPs, along with certain other federally-funded programs, can purchase covered drugs at discounted prices. The discount rate available to ADAPs under the 602 program is comparatively equal to the rebate amount that manufacturers are mandated to pay to state Medicaid programs. Pharmaceutical manufacturers are required to sell drugs to ADAPs at the discounted price so long as the ADAP is officially registered as a participant in this program at the Office of Drug Pricing (ODP) within the Health Resources and Services Administration, the federal agency that administers the 602 discount program. The discounted unit price on covered drugs is calculated to be about 15% below the Average Manufacturers Price (AMP), (i.e., about 15% below the base/wholesale cost of the drug and about 30%-35% below the Average Wholesale Price (AWP) of the drug).

After the passage of the Veteranís Health Care Act in 1992, ODP developed guidelines for participation in the 602 drug discount program. However, these guidelines, as applicable to state ADAPs, have sometimes proved to be a barrier to ADAP participation in the 602 program. For example, the current guidelines permit ADAPs to access drug discounts only through a direct purchasing mechanism and not through a rebate mechanism. This means, effectively, that ADAPs that purchase drugs through an indirect/reimbursement mechanism may not access the discounts available under the 602 program. In addition, those states that purchase directly and participate in the 602 program have been unable, until recently, to distribute drugs through a local or mail order pharmacy mechanism. This situation has recently changed with the recent (August 1996) publication of guidelines on the use of contract pharmacy services in the Federal Register; however ADAPs are currently limited to dispensing drugs from only one pharmacy site under these new guidelines.

State ADAPs that purchase through an indirect mechanism and have, therefore, been unable to access 602 discounted pricing may lack the public health infrastructure necessary to serve as the drug purchasing and distribution entity. For example, it is likely that a moderate- to high-incidence state with a central state pharmacy and a well-developed network of local public health clinics can adequately serve a large ADAP population using a centralized state-operated drug purchasing and distribution system for ADAP. However, a moderate- to high-incidence state that lacks an extensive public health infrastructure may need to rely on a network of private pharmacies in order to serve/reach a large ADAP population.

ODP and the Division of HIV Services (DHS) at HRSA have recently taken steps to provide technical assistance to states on accessing the 602 program. There is also some indication that ODP is developing guidelines which recognize the ability of state ADAPs to obtain 602 discount drug prices through a rebate mechanism. Finally, ODP is researching the feasibility allowing direct purchasing-ADAPs to distribute drugs from more than one pharmacy site. Such an expansion of the guidelines would likely increase the number of ADAPs that could take advantage of the deep drug discounts available to 602 participants.

Voluntary manufacturersí rebates

States that purchase drugs indirectly through a local/mail order pharmacy mechanism may obtain rebates from pharmaceutical manufacturers. Manufacturers currently are not required by federal statute to provide rebates to state ADAPs, therefore these rebates are designated as ìvoluntary.î States must negotiate with manufacturers on an individual basis in order to obtain voluntary rebates. The rebate amount on specific drugs varies from state to state, depending on the size of the ADAP program, the bargaining ìsavvyî of the ADAP negotiator and other factors. These rebate agreements have tended to be very informal in the past, although several manufacturers have begun to offer standardized rebate agreements to certain state programs.

Once a rebate agreement has been established, the state ADAP is required to provide the manufacturer with detailed quarterly data on utilization and program expenditures for the drugs covered under the agreement. Many programs, however, lack the staff resources to prepare such reports and/or the sophisticated data tracking systems necessary to produce them. These barriers, coupled with an often tedious, time-consuming and unequal negotiating process, make ADAP access to this type of cost savings mechanism inconsistent at best.

State ADAPs that are able to negotiate voluntary rebates generally receive a rebate equal to approximately 15% off the AMP unit cost for the drug. However, ADAPs generally reimburse pharmacies for purchased drugs at a rate substantially higher than the AMP. Therefore, the voluntary rebate amount negotiated by state ADAPs is not based on what the ADAP is actually paying for the drug, but on a lower pricing indicator (AMP).

Other cost containment mechanisms

State ADAPs use a variety of other mechanisms to contain program costs and/or enhance program revenue. Some of these are as follows:

Pharmacy-based discounts: ADAPs that purchase through an indirect mechanism may negotiate across the board discounts off the retail price of a drug that the pharmacy charges to self-pay customers. The retail price of a drug is significantly higher than the AMP described earlier. Pharmacy-based discounts are usually designated as a discount off the Average Wholesale Price (AWP)óthe price paid to wholesalers by retail pharmaciesófor example, AWP minus 10%. The AWP of a given drug, however, ranges from between 18% to 22% (or higher) than the AMP.

Collection of third-party insurance reimbursements: Most states permit individuals who have poor prescription coverage under their private insurance plans to be eligible for ADAP benefits. Oftentimes, ADAPs must pay/reimburse the full amount for covered drugs first and then seek reimbursement from third-party insurers after the fact, even though this recouping process can be time and labor intensive.

Collection of co-payments from ADAP clients: State ADAPs sometimes require clients to make co-payments towards the purchase of covered drugs. Co-pay amounts are often determined based on the clientís annual income as a percentage of the federal poverty level. The Ryan White CARE Act allows ADAPs to charge co-pays for covered drugs but has set limits on what may be charged.

Back billing of the state Medicaid program: ADAP clients who become eligible for Medicaid may obtain up to three months of retroactive eligibility/coverage, i.e., the client may have been eligible for prescription drug coverage under Medicaid during the period that ADAP had been paying for covered drugs. Several ADAPs have been successful in establishing mechanisms to recoup funds from their state Medicaid programs for ADAP clients who were granted retroactive Medicaid eligibility.

Coordination between ADAP and the state Medicaid program: Due to disability and/or loss of income, ADAP clients may become eligible for Medicaid benefits and need to transition off the ADAP program. In addition, ADAP clients may become eligible for Medicaid benefits for a short time, then temporarily lose eligibility while meeting spenddown requirements and again require coverage under ADAP. Significant cooperation between the state ADAP and the state Medicaid program is required in order to successfully coordinate these transitions and assure that Medicaid-eligible clients do not remain on ADAP eligibility roles. Finally, in a number of states where the Medicaid program limits the number of prescriptions per beneficiary per month (e.g., Mississippi, Texas), clients may be eligible for Medicaid and ADAP benefits simultaneously. Efforts must be made by the ADAP to carefully coordinate the payment of prescriptions claims so ADAP is the payer of last resort.

Survey Results

States were asked to indicate which of the cost containment strategies described above are utilized by their ADAP. Responses are summarized in the table below:

Cost Containment StrategyNo. of States
Participation in the 602 program20
Voluntary manufacturersí rebates27
Pharmacy-based discounts26
Collection of third-party insurance reimbursements8
Back billing of Medicaid16
Coordination between ADAP and the state Medicaid program37
Collection of co-payments from ADAP clients 7 Other8

Twenty states (38%) reported that their ADAPs participate in the 602/federal drug discount program (the District of Columbia is able to purchase discounted drugs through other federal drug discount programs). Twenty-seven state ADAPs (52%) reported that they receive voluntary manufacturersí rebates and twenty-six states (50%) have negotiated retail pharmacy-based discounts. Thirty-seven states (70%) stated that they coordinate ADAP eligibility with their state Medicaid programs while sixteen states (31%) have a mechanism in place to back bill the state Medicaid program for ADAP clients who receive retroactive Medicaid eligibility. Finally, eight states (15%) indicated that they recoup funds from ADAP clientsí third party insurers.

States ADAPs that receive voluntary manufacturersí rebates were asked to indicate with which manufacturers they have rebate agreements (formal or informal). The ten manufacturers that were cited most frequently are listed below:

Glaxo Wellcome18 states
Merck & Co. 16 states
Bristol Myers Squibb12 states
Abbott 11 states
Hoffman LaRoche11 states
Pfizer11 states
Fujisawa3 states
Jacobus2 states
Pharmacia & Upjohn2 states
Roerig 2 states

All eighteen state ADAPs that purchase drugs directly participate in the 602 program, along with California and Delaware ADAPs, which use multiple purchasing mechanisms. Sixteen of the nineteen state ADAPs that indicated that they use an indirect purchasing mechanism receive voluntary rebates and eighteen of these nineteen states receive retail pharmacy-based discounts.

Several states indicated that they have developed or are developing mechanisms to move as many ADAP clients as possible onto private insurance coverage. Minnesota, for example, assists ADAP clients in obtaining insurance coverage by purchasing coverage (with non-ADAP specific CARE Act funds and with state funds) for clients from private insurers or through a state high risk insurance pool. Oregon and Washington State also have similar insurance purchasing/subsidizing programs proposed or in place. Indianaís ADAP will begin purchasing insurance policies from the state high-risk insurance pool for ADAP clients in April 1997.

Future Opportunities and Challenges

The information obtained from this survey paints a complex and often paradoxical picture of state ADAP programs. Although federal and some state contributions to these programs have increased dramatically over the past two years, evidence from many states indicates that resources remain insufficient to adequately serve people living with HIV/AIDS. As promising new treatments have become available, many ADAPs have sought to include these drugs on their formularies, yet many ADAPs are also faced with making difficult decisions regarding who may have access to these treatments due to severe budget constraints. Some state ADAP formularies offer a large menu of HIV and OI drugs, while others offer only a few.

For many individuals, ADAPs represent the primary ñ and sometimes the sole ñ source of access to medications which may significantly improve the quality and length of their lives. The high cost of combination antiretroviral therapy may be out of reach for individuals who continue to work and have no or inadequate insurance coverage, and who are not ill or poor enough to qualify for Medicaid. These individuals may also be excluded from eligibility for ADAPs based on financial or medical eligibility restrictions.

There is a growing body of literature which suggests that the use of combination therapy including protease inhibitors is a potentially cost-effective means of providing care for people living with HIV/AIDS. In fact, when compared with the cost-effectiveness of other commonly-used medical interventions, combination antiretroviral therapy is shown to be an economically sound investment in terms of cost per year of life saved. Making appropriate treatment available to people living with HIV/AIDS is not only medically and ethically supported, it may also make sound economic sense as well.

Future Considerations

Given the growing demand upon ADAP programs and the resulting cost implications ñ coupled with the tightening federal and state budget scenarios over the next several years ñ it appears likely that ADAPs, as they currently exist, are not prepared to fill the ever-increasing coverage gap for people living with HIV. From its inception, ADAP was designed to fill in a service gap and that gap is widening. Several proposals have recently been forwarded to help improve access to treatments for people living with HIV/AIDS. One such proposal would allow states to extend limited Medicaid benefits, including coverage for antiretroviral therapy, to individuals with HIV who do not meet disability criteria for access to Medicaid.

Among the major opportunities and challenges facing ADAPs in the future:

The Ryan White CARE Act authorizes funding for five Titles (Title I provides emergency medical and support services in 49 funded Eligible Metropolitan Areas; Title II provides comprehensive HIV care funding for every U.S. state as well as dedicated funding for ADAPs; Title III provides funding for early intervention services through community health centers and other local entities; Title IV provides for family-centered care to women, infants and children through local projects linked with clinical research; and Title V provides funding for HIV dental reimbursement and AIDS Education and Training Centers located in academic and medical research centers. The currently proposed FY 1998 Administration budget for all CARE Act programs totals $1.036 billion.

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