Federal AIDS Drug Assistance Program (ADAP)
appropriations were supported by the White House
and Congress with open support from both political parties. Under
Democratic and Republican White
Houses and Congressional leadership, ADAP was well funded federally from
fiscal year (FY) 1996—
specifically, from a federal level of about $50 million to in excess of
$500 million by FY 2000. State
level contributions to ADAP—particularly in larger, high-AIDS incidence
states with active local AIDS
advocacy movements—often did very well in stepping up to the challenge
with millions of additional
dollars of state funds.
Then came “9/11,” changes in Congressional party
leadership and a new White House administration,
the “dot.com” bubble-burst and economic recessions, and budget
constraints at state and federal levels.
ADAP, being a program funded at the discretion of political leaders at
all levels, came on hard times.
Money became even tighter when the Afghanistan and Iraq federal budget
costs appeared, and this
coming just as patients with HIV/AIDS became noticeable as “higher cost
patients” in many privately
funded health insurance plans. Attention was focused on the overall drug
costs for all health conditions,
and states began to think of pushing many “optional” healthcare
services, including HIV/AIDS treatments,
off of their publicly funded Medicaid programs. Subsequently, there was
steady pressure by private
and public sources with various political perspectives to push patients
away from access to healthcare.
These patients now had to look to ADAPs for medication
coverage. Meanwhile, the current ADAP pool
of more than 90,000 clients remains relatively stable. More effective
drugs and treament have
dramatically reduced HIV/AIDS deaths. Although some ADAP clients have
returned to work, health
insurance, if obtainable, often does not cover their HIV/AIDS drugs.
Thousands of new HIV cases among the medically indigent
continue to be discovered in expanded
outreach and testing programs. Inflating healthcare costs continue to
stress the funding stream that
now approaches $1 billion per year in federal, state, and other resource
contributions. These trends,
with the additional burden of approximately 40,000 new HIV infections
each year, strains the fixed
amount of money available for ADAP from federal and state sources.
With these built-in pressures on this pool of working,
low-income Americans, which may range
between 150,000 and 250,000 people (since many are unaware of their HIV
status and are not
in the healthcare system), ADAPs try vainly to keep up with the
resulting stresses and to provide
more patients with treatment access. A natural and expected $100 to $150
million per year funding
demand increase comes just from “normal” program data of the last 5
years—largely driven by
longer survival and increased attempts to enroll in ADAP, within the
context of a political climate very
determined to allocate resources elsewhere or even not at all because of
budgetary, fiscal, or even
ideological reasons.
In FY 2000 the demand for ADAP services and the supply
of available funding started to separate.
Since then, funding has been inadequate, and ADAPs everywhere have
suffered the consequences.
The pharmaceutical industry responded with discounts to reduce ADAP
costs, which helped fixed
public funds to serve more patients. State ADAPs made major efforts to
streamline their programs.
They cut their already low administrative costs and
changed drug delivery systems. Nevertheless,
the remaining fiscal pressures have required many states to remove some
FDA-approved drugs
from their formularies and raised the eligibility standards to exclude
greater numbers of HIV-positive
people. When these efforts were inadequate to meet the needs of the
growing ADAP-dependent
population, ADAP waiting lists began to appear in state after state.
Open, overt, and highly visible
healthcare rationing of HIV/AIDS drugs and services is gradually
becoming the new standard of care
for the medically indigent in the United States.
Although many of the current HIV/AIDS drugs are still
costly even with steep industry discounts,
they are still cost-effective. These prevent progression of HIV disease
to life-threatening complications
that often require even more expensive care in emergency rooms,
hospitals, and nursing homes.
Failure to treat the medically indigent on ADAP waiting lists ensures a
steady stream of patients
entering into the most expensive healthcare settings without the
resources to pay for that care.
The result of the increased demand for drugs and
services for the increasing numbers of medically
indigent with HIV and the spiraling cost of medical care since FY 2002
has been consistent federal
under-funding of ADAP. In FY 2004 it appears likely that, despite a
widely accepted figure of an
additional $214 million of federal ADAP funding needed, only $38 million
will be provided. Although
AIDS and ADAP “champions” exist within the White House and the
Democratic and Republican
Congressional leadership, the budget-hawks have prevailed to date and
the fallout descends on
ADAPs and those who must look to them for treatment.
Since 1995, the Data Committee of the ADAP Working
Group, an advocacy coalition of HIV
healthcare providers, AIDS organizations, and research-based drug
companies, provides an annual
estimate of the ADAP “need number.” This number is based on special ADAP
survey data collected
as part of the Kaiser Family Foundation–funded annual ADAP Monitoring
Project. The Group’s
projections have proven accurate for many years and have been widely
accepted by Congress and
past and present Administrations. Despite having an accurate, known,
“need-number,”
the AIDS advocacy communities are now in the fourth year
of a Congress and an Administration
unwilling to fund it. In Congress, the primary obstacles to ADAP funding
are arguments on the
amount of the overall budget that loosely translates as “we don’t have
the money.” This is a political
answer requiring a political response and political engagement.
Finding money for appropriate and necessary activities
and uses, such as ADAP, is a political
decision in America. It is totally dependant on political leadership and
thus calls out for AIDS
advocacy. Through grassroots advocacy, democracies educate and reward
their elected leaders
for good leadership and for making sure that the grass-roots problems
are addressed and fixed.
Drug access for the medically indigent with HIV/AIDS is now a political
challenge. A moral
resolution of this challenge can only be effected by the creation of a
politically powerful local
grass-roots advocacy movement since the adverse impacts of HIV/AIDS
healthcare rationing—
the unnecessary cost burdens, and the damage to patients, families,
healthcare budgets, and
communities—are all local challenges.
If these costs and other adverse impacts of such
rationing must be borne locally, then the
communities affected must demand relief from higher levels of
government. It is time to hit the
streets again, to work on election campaigns, to write your local
newspapers, to write your
government leaders, to picket at public events, to march on political
leaders, to take up civil
disobedience, to work with others whose needs in healthcare match ours,
to make thousands
of insistent phone calls to everyone who is supposed to be leading us.
We should not have to
do this, but now it is political, and now, for the AIDS advocacy
community, it is personal.
The question is: Can we get the number of advocacy players onto the
national stage that we need
in enough numbers, places, and situations across the country to get the
ADAP crisis solved? We
have done this before. It worked then, and it will work now. Five
hundred thousand Americans have
died from AIDS. Why should even one more have to die because of a lack
of access to available
HIV drugs?
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