NATIONAL ADAP MONITORING PROJECT - AIDS United

Introduction
Spending on prescription drugs is one of the fastest
growing segments of overall health care spending. 1,2
Spending on HIV-related drugs is no exception.
Combination antiretroviral therapy and medications for
the prevention and treatment of HIV-related
opportunistic infections are critical for HIV-infected
individuals to achieve positive health outcomes. Yet
HIV drugs are expensive, costing between $10,000 and
$12,000 per year. 3 Newer, more expensive drugs and
the use of additional drugs to boost effectiveness or as
“salvage” therapy may drive costs even higher. 4 The
expense of HIV drugs creates a significant barrier for
HIV-positive individuals who do not have access to
private or public insurance or whose insurance does not
sufficiently cover costs associated with prescription
medications. 5 AIDS Drug Assistance Programs
(ADAPs) provide FDA approved HIV-related
prescription drugs to underinsured and uninsured
individuals living with HIV/AIDS in all 50 states, the
District of Columbia, Guam, Puerto Rico, and the
Virgin Islands. 6 As such, ADAPs—estimated to have
served close to 140,000 clients in 2001, 7 including
almost 77,000 clients in the month of June 2001
alone—play a vital role in the healthcare of many HIV
infected individuals.
ADAPs operate within a dynamic environment, amid a
variety of public and private insurance and care
programs that provide prescription medications. Like
all Ryan White CARE Act programs, ADAPs serve as
payer of last resort, when no other safety-net program
can provide the necessary drugs for those infected.
ADAPs are not entitlement programs; annual federal,
and in some cases state, appropriations determine how
many clients ADAPs can serve and the level of services
they can provide. In addition, the CARE Act gives
states broad authority to set program eligibility criteria
and to decide what HIV-related treatments to include on
ADAP formularies, decisions that are often dictated by
the availability of ADAP resources. Finally, health care
system capacity and the availability of other programs
within a given jurisdiction affect the ability of ADAPs
to fill the gaps in prescription drug coverage. As a
result, ADAPs are vulnerable to changes that impact
fiscal priorities and to changes in other healthcare
programs. Indeed, the recent economic downturn has
Executive Summary
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introduced new budget pressures for states, including
for state Medicaid programs, the largest public payers
of HIV/AIDS care, which in turn could affect demand
on and resources for ADAPs. In addition to fiscal
changes, the HIV-related treatment environment is
increasingly complex, raising new challenges for
ADAPs over time.
National ADAP Trends & Key Themes
The National ADAP Monitoring Project began tracking
state and territorial ADAPs in 1996, at a time of
tremendous change in the treatment of HIV/AIDS. The
introduction of the first protease inhibitors and a move
toward combination therapy at the end of
1995/beginning of 1996 represented a dramatic
technological shift that greatly impacted ADAPs.
Combination therapy became the first therapy to
produce remarkable benefits to those living with
HIV/AIDS, greatly increasing both length and quality
of life. With the promise of new therapies, many people
sought testing and treatment for the first time, causing
ADAP enrollment to jump 23% in the last 6 months of
1996 alone, with some ADAPs experiencing increases
of 50% or more during that period. National ADAP
expenditures increased by 37% during the last six
months of 1996 as well.
To meet this challenge, Congress appropriated
supplemental funding for ADAPs in late 1996, leading
to an increase of 97% ($182 million) in the national
ADAP budget from FY 1996 to FY 1997 alone. Since
that time, national ADAP trends have remained
relatively constant over time, with ADAP client
utilization, expenditures, and budgets growing but at
slower rates, although individual states have
experienced change at different rates.
Analysis of data from 1996 through 2001, collected by
the National ADAP Monitoring Project, highlights
several major trends and key themes over time,
including:
• The demographic makeup of ADAP clients has
remained fairly constant over the past several years.
ADAPs continue to serve primarily people of color—
although whites comprise the single largest
demographic group. Most ADAP clients continue to