AIDS - The Sacred Cow Has
Become The Great Cash Cow
By Wayne Turner
The Bay Area Reporter

The Ryan White-wash.
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.
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.
Yet lawmakers and the administration have done little to ensure that those hard fought-for dollars actually help patients.
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.
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.
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.
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.
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.
Foxes guarding the hen house
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.
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.
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.
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.
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.
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.
Health care for dead people
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).
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.
Lobbyists: Patients vs. providers
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).
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.
These modest provisions, activists hope, will help strengthen patient participation and oversight at both the local and federal levels:
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).
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.
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.
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.
Challenges ahead
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.
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.
The 107th Congress can prove its commitment to AIDS by measuring its programs' deliverables, and not just its annual appropriation.
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.
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.
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.
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.
It's time to end AIDS, Inc.
Wayne Turner is a co-founder of ACT UP in Washington, D.C.

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