| This
issue of Positively Aware focuses primarily on the promising
news related to HIV therapy and new treatment options coming
out of the 2003 Conference on Retroviruses and Opportunistic
Infections. Yet, the reality of the situation is that more and
more men, women and children in the U.S. are being left on the
outside looking in when it comes to access to healthcare and
medicines. In a “guest editorial,” my good friend Carl Winfield
discusses the crisis in ADAPs across America and what it means
as the number of uninsured and low income people living longer
with HIV climbs, as the annual cost of anti-HIV drugs continues
to increase, and federal support for ADAP slows.
Be Strong. Stay Safe.
Charles E. Clifton
Executive Director / Editor
Send comments and reactions to ed@tpan.com
ADAP in Crisis
by Carl Winfield
The AIDS Drug Assistance
Program (ADAP) has been in crisis from the start, but now,
some 20 years later, the program is collapsing at a time when
it is needed the most.
Consistent state and federal
budget shortfalls have forced ADAPs around the country to
“modify” their approach to care. Formularies—the list of drugs
available—have been reduced to the point where some antiretroviral
medications are simply “unavailable.” Newly diagnosed men
and women seeking access to the program are being instructed
to sign waiting lists for care, in the hope that they will
be the next on the list to receive drug therapy. Pharmaceutical
companies argue that returns on their investments are too
low and everybody wonders how they will be able to afford
antiretroviral drugs in the worst economic environment of
recent memory.
Nationwide campaigns like
the AIDS Treatment Action Coalition (ATAC) Save ADAP drive
coupled with the efforts of Senators Charles Schumer (D-NY)
and Gordon Smith (D-Oregon) succeeded in getting Congress
to recently approve an $80 million increase in ADAP’s federal
funding. However, that sum is a far cry from the $162 million
increase needed to the address growing HIV epidemic in the
U.S. ADAP is funded under Title II of the Ryan White CARE
Act, its funding must be appropriated as a part of federal
discretionary spending, as well as subsidized by state government
dollars.
The Centers for Disease Control
and Prevention (CDC) estimates that there are as many as 900,000
people living with HIV/AIDS in the U.S. The CDC suggests that
as many as 300,000 of those infected with the virus receive
no HIV-related medical treatment. Further estimates by the
CDC suggest that at least 240,000 people with HIV are unaware
that they are infected.
As ADAPs around the country
fight for their continued existence, newly diagnosed men and
women are forced to gamble with their health. “Without access
to testing and care people… will just fall through the cracks,”
said Lei Chou of AIDS Treatment Data Network in New York City.
Federal spending for ADAP
has risen steadily for some time: going from $219 million
in 1996 to $639 million in 2002. Thirty-six states provided
more than $157 million for ADAP in fiscal year 2002. Percentages
of Title I funding from the Ryan White CARE Act yielded more
than $40 million, bringing total funding for fiscal year 2002
to $714 million. However, it’s been reported that ADAPs continued
to operate under an $82 million deficit in 2002.
During the Clinton administration,
ADAP was able to keep pace with the rising costs of antiretroviral
medications and the number of people applying for ADAP assistance,
but an economic slowdown and the war with Iraq has drained
resources that could have been used to increase ADAP funding.
The current administration
has experienced a series of public relations backlashes as
a result of its economic policies. Not least among them was
an early proposal to provide flat funding for the Ryan White
CARE Act. While a lump sum would have given the appearance
that the Bush administration was concerned about ADAP’s availability,
it would have made it virtually impossible to obtain more
money and further eroded ADAP’s ability to provide care to
people with low income and no insurance.
Ultimately, the issue of
ADAP budget appropriations was passed on to Congress, which
granted the program $80 million dollars. However, with projected
nationwide increases in unemployment, a growing inability
of most people to afford health care and an estimated one
million people losing access to antiretrovirals and other
medications through Medicaid this year, it is questionable
whether or not ADAP will survive.
“The… difference in
the degree of the [ADAP] ‘crisis’” said Bill Arnold, of Washington
D.C.’s ADAP Working Group, “is whether the problem is at the
door or is projected to arrive at some point… in the future.”
Many of us believe that the problem has been at the door for
a long time, and that the future is now.
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