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november 1.2002 • | n t « Ë | ^
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O
G rassroot G oals
regon is home to 5,200 people with
HIV/AIDS, many of whom can
not afford the extremely expensive
medications that can increase the
quality of and prolong their lives.
Coalition pushes for AIDS drug assistance by Caitiin Smith
The federal government, through the AIDS
Drug Assistance Program, provides financial
help to states to give low-income people better
access to these medications. In Oregon, this
money is disbursed by the state-run program
CAREAssist.
CAREAssist now is being challenged by a
budget shortfall, as the funds formerly provided
by A DA P have been cut. In order to stay afloat,
the state program has proposed expelling 300
clients, potentially leaving 300 people suddenly
without access to their medications.
But those affected by the shortfall might
have another option— to be rescued by a new
organization called the A ID S Service Access
and Accountability Coalition. Headed by facili
tating director Steve Carroll, it aims to provide
financial help to people with HIV who can’t
afford their medications, including current and
former clients of CAREAssist.
The grassrixtts organization was formed in
response to the deplorable ways in which
CAREAssist proposed to manage its financial
troubles. The consequences of cutting someone
with HIV/AIDS off from access to medications
Fred Schaich (left) and Steve Carroll recently returned from Washington, D .C ., where they
are severe. “Obviously, this was an appalling and
lobbied for H IV /A ID S funding
unprecedented concept,” says Carroll, noting
that never before had a state A D A P suggested
Beginning in January 2003, CAREAssist
can do this much more effectively than can
removing people from an active program.
plans to require clients to pay a monthly fee. But
CAREAssist.
But a group of concerned citizens wouldn’t
making this payment is difficult for people in the
The coalition “consists, at this time, of peo
stand for this. “The result was a gathering of indi program. As Carroll comments, “It is not hard
ple living with HIV/AIDS helping others of our
viduals to discuss and confront the absurd ideas
to imagine people living at 100 percent to 325
community living with HIV/AIDS,” Carroll
coming out of these offices,” Carroll says. The
percent of the federal poverty level as having a says. “We have an entirely different network to
emerging organization saw its mission as twofold:
couple of had months financially, hut that
reach people because we are those people.”
to demand accountability from the state and to
shouldn’t mean they should he denied drug
Carroll also stresses that, despite his intense
provide access to medications for those in need,
treatment for AID S.”
involvement in the coalition, helping people
especially those cut off from CAREAssist funding.
Secondly, the coalition plans to help people
live with HIV/AIDS is a community effort: “ It is
Toward its first goal, the coalition began
on the CAREAssist waiting list until a space
essential for everyone to understand that this is
investigating information disclosed by the state
opens for them. A total of 23 people are on the
a coalition of individuals and service-related
relating to A D A P funding. However, it has
waiting list, with more applications under organizations. We depend on each other to
been hampered by the dearth of statistics
review.
make the decisions, and we pass information
released by CAREAssist.
Lastly, the coalition wants to offer assistance
freely among our group to all and any who want
“The state, by holding hack critical informa without rigid income restrictions, by assessing
to be involved. We like to approach our position
tion, has hindered the collective ability of this
each individual application for need. C A R E in the community as one that hears and acts
community to mitigate circumstances,” Carroll
Assist only provides aid for people who earn less upon the suggestion of our community."
says. “This has created a dangerous and life-
than 325 percent of the federal poverty level
The spirit of the coalition is in contrast to
threatening situation for HIV/AIDS patients.”
($28,795 a year), and new clients can make no
the experience of its members with the Oregon
Toward its second goal, the coalition
more than 200 percent. This is a severe restric Health Division, which is guilty of “concealing
designed a medication aid program and has
tion, considering AIDS drug treatments can
information and/or misdirecting (CAREAssist]
applied to various foundations for funding.
cost up to $20,000 a year.
until a crisis occurs,” another coalition member
However, Carroll says, “We are still waiting for
According to the coalition, one of the main
says. “It is an uphill struggle trying to enter into
approval and the grants funds necessary to
flaws of CAREAssist is that it didn’t communi credible relationships with an agency whose
implement our financial assistance plan.”
cate well with the HIV/AIDS community. Car-
leadership is committed to obstructionist posi
The proposed aid plan has three major parts.
roll stresses the importance of reaching out to
tions or even just having underlying reluctance
Firstly, the coalition plans to provide supple people in need who might not know where they
to engage in open conversation.”
can go for help. He thinks coalition volunteers
mental assistance to CAREAssist clients.
When asked about the coalition’s criticism
that CAREAssist is poorly run, a representative
of spokeswoman Bonnie Widerburg simply said
that changes were being made to allow the pro
gram to operate for the rest of the grant year.
Furthermore, it “is continuing to meet with our
advisory committee to review the implementa
tion process and to develop strategies to address
issues [that] will arise if adequate funding is not
obtained for the next grant year.”
The Department of Human Services points
out that the costs of HIV treatment and health
insurance have grown significantly, while feder
al funding has not. “In addition,” state epidemi
ologist Mel Kohn said in a recent press release,
“Oregon’s program has had a dramatic increase
in enrollment, created by the state’s economic
downturn and loss of jobs."
Working with Carroll at the coalition is Fred
Schaich, founder of the International Founda
tion for Alternative Research in AIDS, a Flori
da-based organization with a strong presence in
Oregon that aims to “foster new paradigms and
integrative treatment concepts and conduct
comprehensive treatment education programs
in HIV/AIDS.” The two men recently returned
from Washington, D.C., where they joined
about 30 people from other states, members of
the AIDS Treatment Activist Coalition, lobby
ing for an additional $162 million in funding for
people with HIV/AIDS.
Securing more funding is especially challeng
ing now, Schaich notes, because “with the ‘war
mentality’ and consequential ‘flat funding men
tality’ circulating...it will be most difficult to
expect Congress to appropriate any or all of the
$162 million needed to save ADAP.”
Like Carroll, Schaich says that as long as he
is well, he puts most of his time into activism and
HIV/AIDS treatment education. “I am a sur
vivor. I survive and thrive because I participate
in my health care.... I’m not lucky for having
survived AIDS since 1980,1 just work hard at it.”
The time and energy Schaich puts into the
foundation and the coalition come from first
hand knowledge of what it’s like to live with
HIV/AIDS. “I respect and admire anyone who
has developed the coping skills to live with this
lifelong disease, its stigmas, opportunistic infec-
tions/diseases and treatments.”
But Schaich vehemently encourages people
to take control of their own health care. “Why
don’t others become at least interested in what
it is that may save their lives? I just take it a step
further and like to help others with treatment
options and concepts that I find useful.
“Remember,” Schaich adds, "it’s not easy to
live with HIV/AIDS, but it is possible!” J H
For more information contact the AIDS SERVICE
A ccess and A ccountability C oalition at
503-288-6582 or asaac@atthi.com.
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