26
T march 21. 2002
m~W f~ an. 13 was a day of wrath, a day of
mourning for R. David Meador. That
was when he received a letter from
the state of Oregon informing him
that his HIV drug assistance benefits
would end in two weeks. The state’s Medically
Needy program had run out of money.
“All hell broke loose," Meador recalls,
remembering how he was “cussing, cursing, cry
ing, shouting and throwing things.”
The form letter had cut a critical lifeline for
Meador and many low-income Oregonians with
HIV and AIDS— including a large number of
gay men— whose lives depend upon prescription
medication.
After first contacting his county caseworker,
Meador jumped on the phone to call Salem leg
islators. He wanted to put a face on the imper
sonal numbers of an unwieldy state budget that
led to the program’s demise. The few legislative
aides that responded were sympathetic, hut not
helpful.
“Government should not control people’s
lives, hut it should help to preserve life. You just
don’t go around killing people,” Meador says,
“especially when the government sets the prece
dent to start paying for the drugs in the first
place.”
Meador, a 38-year-old gay man, lives with his
partner in Northeast Portland. He was diag
nosed with HIV in 1989 and A ID S in 1993. He
remembers when newly developed drugs, such as
anti-retrovirals, changed his existence from one
of dying of AIDS to that of living with HIV.
Meador was one of many patients that benefited
from these drug regimens with the assistance of
state and federal health funding, such as the
Medically Needy program of the Oregon
Department of Human Services.
“Now, the threat of being ripped off them is
a nightmare,” he shares.
Meador has been in the process of filling out
about a dozen different applications for patient
assistance programs available through individ
ual pharmaceutical companies that assist people
who can’t afford to buy the drugs they need.
Each program has its own paperwork to com
plete and conditions to meet.
“It’s all-consuming,” he notes. “ I get up, fill
out forms, go to bed, fill out forms.”
But flipping through this pile of paperwork
may provide his only hope for maintaining his
health.
Meador’s regular regimen of 13 meds
includes not only the life-saving anti-retrovirals
hut also treatments such as antifungals and
antibiotics that allow him to enjoy a reasonably
functional life. Together, the monthly prescrip
tions cost $2,000.
Even if Meador is accepted onto all of the
necessary patient assistance programs, making
ends meet won’t he easy. These programs com
monly require a user co-payment. Although
nominal, the co-payment eats into the $900 a
month he receives from Social Security, which
is his sole means of support. That leaves few
resources for other necessities, such as food,
rent, clothing and frequent trip« to his case
manager, doctor and pharmacy.
“You take it one day at a time,” he says,
uncertain hut still hopefi.il, knowing it won’t be
long until he runs out of medication. “As long as
I can get the anti-retrovirals....”
Meador continues to look at other sources of
support, too, hut the funding crisis is so wide
spread that even the A ID S Drug Assistance
Program, funded through federal Ryan White
Comprehensive A ID S Resources Emergency
Act Title I monies, is now an unlikely source of
assistance. Like the unbalanced economy, too
much demand is chasing too few dollars.
“I blame social complacency,” Meador states.
Everybody was experiencing “smooth economic
sailing with a ‘me, me, me’ attitude. There was
A S tate of
RECKONING
Feeling abandoned by legislators
and fighting complacency,
Oregonians living with HIV
make grassroots efforts
to seek accountability
by Timothy Krause
<mM & p l i i i i l
\
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Ever since the state cut off his H IV drug benefits, R. David Meador has been busy filling out
applications for patient assistance programs
no feeling that the floor could cave in. Now that
it did, no one knows where to turn.”
While Meador understands the basic eco
nomics— no cash, no programs— he argues that
legislators could have prioritized more effective-
ly and provided better information to voters
about funding options, such as the recent Ballot
Measure 28.
“ 1 think government— and society as a
whole— has forgotten a sense of community and
sense of responsibility toward community,”
Meador remarks. The government has “a huge
responsibility to sp>end money wisely. They may
have to stop worrying about re-election and be
bold enough to propose a tax increase.”
The media also focused on school closures,
he says, making Measure 28 look like an educa
tion initiative. Journalists neither illustrated the
life-and-death nature of the measure’s impact
nor explored the complex issues tied to the
changes that have been implemented as a result
of a bankrupt state.
But as nonprofit organizations and govern
ment agencies alike scramble for ways to main
tain services to the HIV community, Meador
hopes they’ll keep in mind their ultimate mis
sion of serving individuals and worry less about
maintaining the status quo.
“No one is focusing on the consumer’s need,”
he says. “Whatever happened to the client
determining what is right for them?”
'i ommon at the onslaught of AIDS, this self-
C
/ determined, individual-oriented grassroots
approach is on the rise again in Portland with
the January formation of A ID S Action Project
Northwest.
In a setting more akin to a Sunday afternmn
football game, four gay HIV-positive guys sit
around a living room off Northeast Broadway,
determined to give consumers a vehicle for self-
advocacy. They are laying the groundwork for
this new statewide nonprofit organization that
will keep consumers of HIV/AIDS services
informed and encourage them to provide input,
direction and monitoring of services and fund
ing in Oregon.
AAPN W grew out of two different local
efforts. One was interested more in activism,
while the other sought quality assurance. As the
state’s budget crisis grew, participants began to
close in on similar goals of accountability, seek
ing to empxnver individual consumers as watch
dogs of service providers that sometimes are
thought to put organizational needs ahead of
client well-being.
Board member Eric Landon compares the
past year with a “perfect storm,” describing how
Oregon’s formerly compartmentalized HIV serv
ices were becoming more integrated into the
state’s health care system just as the system col
lapsed. He says, “Everyone was running for
cover asking, where are we going to get our
medications?”
Then, during the course of the year, as the
state began its roller-coaster ride of cuts, refund
ing, more cuts and more refunding, public doubt
grew for the need of Measure 28 to maintain
vital services. While funding cuts have not been
limited to HIV programs, AAPNW organizers
say the impact is greater than for other diseases
because drug costs are so much higher.
There already was some truth to the joke
that twists the prevention motto of "Get tested,
get treated” into a more realistic “Get tested, get
in line.” Now, these community leaders ask
what kind of incentive there is even to get test
ed if there’s no affordable treatment.
Fellow board member Fred Schaich tells how
the state’s health care plan for low-income peo
ple living with HIV is dependent upon a sus
tainable government with accountability in
place. “Once that system begins to fall apart,” he
comments, “it’s like a huge house of cards that
collapses.”
Even while AAPNW continues to organize
as a formal nonprofit, the group already has held
a meeting to initiate a dialogue among con
sumers and stakeholders.
“Everybody talks about a stakeholder in
these scenarios, and a lot of times, they’re actu
ally referring to the institutions around the
stakeholders,” says SteYb Carroll, also on the
board of directors. “ But we were going to people