- The Ryan White-wash.
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- After a hard fought 20 years, AIDS has finally become
a political sacred cow. Immune from budget cuts, even the Republican controlled
Congress has steadily increased federal AIDS funding, at times above the
Clinton administration's request. The Ryan White CARE Act, a $1.7 billion
program, was unanimously re-authorized by the 106th Congress last year.
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- Named 10 years ago in memory of a teenager who died from
AIDS, the Ryan White CARE Act was originally conceived to provide emergency
relief to low-income people with HIV and AIDS, for doctor's visits, medications,
food banks, emergency assistance, and other survival services.
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- Yet lawmakers and the administration have done little
to ensure that those hard fought-for dollars actually help patients.
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- Lax oversight for federal AIDS programs has resulted
in numerous funding abuses, from San Francisco to San Juan, ranging from
glaring misuse to outright fraud. While the money keeps rolling in, many
HIV/AIDS patients continue to suffer, with low-quality care, or no services
at all.
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- Hundreds of AIDS patients died in Puerto Rico because
$2.2 million in Ryan White funds were embezzled by administrators of the
San Juan AIDS Institute. A local investigation revealed that money intended
for patient care had been diverted to political campaigns, for personal
maids, Jaguars, and Jet Skis.
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- The U.S. Attorney's office won five convictions, and
seven guilty pleas. Yet they are little consolation for the surviving family
members who watched their loved ones die.
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- The San Juan case is, tragically, not isolated. The FBI
is currently probing an AIDS clinic in Dallas, Texas, after local authorities
uncovered tens of thousand of Ryan White dollars had been spent on shopping
sprees to Neiman-Marcus, and psychic phone-in calls. A bookkeeper in Florida
pleaded guilty to stealing $500,000 in AIDS money, and spent the funds
on trips to Disney World. Los Angeles auditors discovered three years of
federal AIDS housing funds in a hidden bank account. In Indiana, a statewide
agency diverted funds intended for emergency patient assistance, to help
cover its own operating costs.
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- The mounting cases of outright embezzlement are only
part of the problem. A decade of unaccountable spending has resulted in
a vast AIDS bureaucracy that has become as entrenched, and often indifferent,
as any government-subsidized industry.
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- Foxes guarding the hen house
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- The administrators of some AIDS charities earn more than
mayors, governors, and members of Congress. The head of the San Francisco
AIDS Foundation, Pat Christen, tops the list, earning more than $200,000
a year, according to the group's 990 tax forms for 1999.
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- The inflated salaries for some AIDS executives is starkly
contrasted by the subsistence living of many HIV/AIDS patients. Their daily
struggle for survival is only confounded by the intricate maze of repetitious
forms, red tape, paperwork, and waiting lists created by the AIDS service
industry.
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- The CARE Act has become more like a jobs program for
bureaucrats. Groups receiving funds invest more in staff and overhead than
in patient care, ready for the next grant cycle where infrastructure counts
more than effectiveness.
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- The Bay Area Reporter wrote two years ago about a man
with AIDS, suffering from chronic diarrhea. Tony Leone, who later died
of AIDS-related complications, was denied a 95-cent adult diaper as he
left a health facility in San Francisco. He traveled home from his appointment
on a bus, soaked in his own excrement.
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- When the Ryan White Act was first drafted back in 1990,
Congress empowered locally appointed community members to establish critical
service priorities and oversee the allocation of federal dollars: Title
I planning councils.
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- The promise of full community participation and oversight
in the allocation of federal funds never materialized. Planning councils
have for 10 years been packed with salaried employees, board members, and
consultants of groups receiving Ryan White funds. With conflict of interest
rules rarely enforced, what could be an effective body of local watchdogs,
has become more like a group of foxes guarding the hen house.
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- Health care for dead people
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- Since 1990, Ryan White CARE Act funds have been distributed
according to a complicated formula that counts the cumulative number of
AIDS cases within a jurisdiction, and not the current number of living
clients. As a result, areas which experienced a devastating death toll
early on in the epidemic, like San Francisco, still receive twice the funds,
per patient ($5,980), than other cities with a comparable caseload, such
as Chicago ($3,123) and the District of Columbia ($2,869).
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- Taxpayers have been funding health care services for
dead people, according to congressional testimony by an official from the
General Accounting Office. Funding inequities particularly impact African
American and other minority communities now facing the full brunt of the
AIDS epidemic. HIV/AIDS patients in 17 states are on waiting lists or have
restricted access to potentially life-saving medications under the AIDS
Drug Assistance Program, while the CARE Act pays for flirting classes,
dog walking, and HIV bowling nights in San Francisco.
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- Lobbyists: Patients vs. providers
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- The bulk of Washington AIDS political muscle is concentrated,
not with patient groups, but lobbying firms for AIDS service providers.
Nonprofit AIDS agencies have invested millions of dollars in operations
like the AIDS Action Council, and the CAEAR Coalition (Cities Advocating
Emergency AIDS Response).
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- The fight to include accountability reforms in the CARE
Act faced an uphill battle. Activists found an unusual ally ,Äì
conservative Republican Dr. Tom Coburn (R-Oklahoma), co-author of the CARE
Act in the House of Representatives. He was joined by Democrat Henry Waxman
(D-California) to incorporate accountability measures, proposed by patient
activists, in the final version of the CARE Act.
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- These modest provisions, activists hope, will help strengthen
patient participation and oversight at both the local and federal levels:
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- o At least a third of Title I planning council members
would be required to be consumers of CARE services who are "non-aligned"
(meaning not a salaried employee, board member, or consultant for an organization
receiving CARE Act funds).
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- o Federal sunshine laws would be applied to Title I planning
councils. This would guarantee all meetings would be open to the public
and the records, reports, and minutes would be available to the public.
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- o New planning council members would be provided with
appropriate training guidance to ensure the ability of new members to fully
participate in council activities.
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- o A random sampling of contractors, grantees, and sub-grantees
from all Ryan White CARE Act programs would be audited annually by the
federal government.
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- Challenges ahead
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- The growing, bloated network of AIDS executives, funding
abuses, lobbyists, and conferences, will undoubtedly continue, even with
these reforms. However, cracks are beginning to show in the AIDS industry.
People living with HIV and AIDS are asking questions, and demanding results,
because not enough of the dollars earmarked for their treatment and care
are trickling down.
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- The Ryan White CARE Act, in its implementation, needs
to place a greater priority on patients' needs, instead of feeding the
money-hungry bureaucracy. Turning that hope into reality poses significant
challenges.
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- The 107th Congress can prove its commitment to AIDS by
measuring its programs' deliverables, and not just its annual appropriation.
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- Likewise, the mainstream media, now accustomed to featuring
feel-good stories on events like the AIDS Rides, should follow their counterparts
in the gay press by scrutinizing where those millions of dollars raised
actually go.
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- The ultimate challenge faces people living with HIV and
AIDS, particularly those without health insurance, living in poverty. For
them, survival means a daily struggle for medicine, food, and a place to
call home. They can be the most effective watchdogs, and yet their voices
are so often silenced.
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- Herein lies the mindset of the AIDS service industry
,Äì they think the money belongs to them. They pay for the
lobbyists, write the grants, set their own salaries and bill it all the
U.S. taxpayer.
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- Too many victims have already slipped through the safety
net of a paternalistic and self-serving AIDS care delivery system. If those
infected hope to be healthy, and possibly survive, it will mean challenging
an industry now driven by greed, arrogance, and indifference to patient
suffering.
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- It's time to end AIDS, Inc.
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- Wayne Turner is a co-founder of ACT UP in Washington,
D.C. actupdc@aol.com www.actupdc.org
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