By Michael E. Miller
By Ryan Yousefi
By Kyle Munzenrieder
By Sabrina Rodriguez
By Michael E. Miller
By Carlos Suarez De Jesus
By Luther Campbell
By Kyle Munzenrieder
A small man with close-cropped hair sits behind a conference table at Mercy Hospital, clenching a pen and glowering. The room, located on the sixth floor and overlooking a glistening expanse of Biscayne Bay, is sprinkled with about twenty people, most of them infected with HIV, the virus that causes AIDS. "We are getting away from the consensus I am trying to get," he says with a scowl.
Gene Suarez, an activist for the People With AIDS Coalition, senses resistance. The issue is food vouchers. The largest of the half-dozen AIDS organizations that provide vouchers is allegedly favoring its own clients -- those who have registered with the agency and completed an extensive intake process -- over other infected people in the county. According to Suarez's group, Health Crisis Network is refusing to distribute the $35 certificates, redeemable for food at Winn Dixie supermarkets, to hungry AIDS patients who walk in the door for the first time or who are referred by other service providers.
Suarez is asking the AIDS community to censure Health Crisis Network. He wants PWAs (shorthand for people with AIDS) to demand equal treatment. Using classic Sixties-era protest rhetoric, he attempts to rally the dozen or so PWAs attending the March 14 meeting. Money-hungry providers are discriminating against powerless AIDS sufferers. The afflicted need to unite and fight back. It's as simple as that. But Suarez's exhortations are escaping other activists.
Joey Wynn, a vocal advocate for the rights of the HIV-infected, is uncomfortable with a flat-out condemnation of one of Dade's oldest and most highly regarded AIDS agencies. He appeals for dialogue. "Our purpose is to change this," he says earnestly. "We don't like this. We don't feel it's right. But if you want to get something from somebody, you have to meet them on equal terms and work it out."
"That's not true," Suarez interrupts, his voice tense with anger. "You can hurt their pocketbook. If you hurt their pocketbook, they will respond. That's what we gotta do. It's a business."
"It's only $15,000 in government funding," Wynn tries to reason with Suarez, pointing out that Health Crisis Network has a budget of well over two million dollars. "It's irrelevant."
Suarez ignores Wynn, repeating monotonously: "If you hurt their pocketbook...."
"If they lose [the food-voucher money] it's no big deal," Wynn continues, his common-sense argument sounding like a plea. "There is a proper way to change it."
"There are many ways to change it," Suarez snaps. "You can do it diplomatically or you can do it the militant way."
"I think you would make a bigger impact by speaking to HCN's board of directors," offers Barbara Gottlieb, herself a board member at another AIDS organization providing food vouchers. "They need to know what's going on."
Suarez flinches at her comment, and the tenor of discussion suddenly becomes deeply personal. "That's what you think because you're not a person with AIDS," he blurts out in exasperation. "You don't understand the urgency we have with some of these things.
"You are not a person with AIDS," he repeats, his voice rising. Everyone reacts at once, and the room erupts in turmoil. Gottlieb immediately retracts her suggestion. "I know," she says soothingly. "I agree with you. I agree with you."
"That has nothing to do with the issue," someone protests.
"It does. It does!" Suarez insists.
Technically, Suarez has a point. The PWA Consensus Committee, gathered that evening at Mercy Hospital, was formed by the Metro-Dade HIV Health Services Planning Council this past December in order to increase the participation of people living with AIDS and include their input in the council's decisions. Made up of representatives of provider organizations, AIDS sufferers, and community members, the council advises the Dade County Commission about allocating Ryan White Title One federal funds for the care and treatment of AIDS patients. (Ryan White was a teenage hemophiliac from Indiana whose struggle for acceptance after he contracted HIV through a blood transfusion brought the disease to national prominence.) This year those funds are expected to equal a little more than $19 million, about half of the total amount of federal money earmarked for local AIDS programs.
In spite of its bureaucratic moniker and unwieldy responsibilities, the Health Services Planning Council's actions have immediate repercussions on the lives of the estimated 34,000 county residents infected with HIV. Yet few have any idea of what it does.
As a member of the council and an activist with the People With AIDS Coalition (PWAC), Suarez has hammered at the issue of increased participation by AIDS victims, insisting that only people directly affected by the disease will care enough to make sure the millions of federal dollars are properly spent. PWAC itself functions as an unofficial watchdog, pointing out conflicts of interest, violations of Florida's Sunshine Law, and suspected fraud. The Coalition also sponsors its own support groups and offers an array of assistance, ranging from free haircuts to anonymous AIDS testing.
Strident and uncompromising, PWAC activists have become the bane of AIDS-related meetings. Within the white-washed walls of the organization's Biscayne Boulevard headquarters, however, their abrasive reputation is a source of pride. "Advocates don't make friends; advocates make allies," says J.D. Ramsay, volunteer editor of PWAC's monthly newsletter, which has developed notoriety for attacking providers it alleges have abused either their funding or their clients.
Charles Hutchison, the 59-year-old executive director of PWAC, boasts about how he once intimidated a member of the Miami Beach Zoning Board of Adjustment into changing her vote on a project slated to provide affordable housing to AIDS victims. Tall, with a russet beard and dark eyes magnified by black-rimmed spectacles, Hutchison cuts an imposing figure. A descendant of Cherokee Indians, he doesn't shrink from confrontation. "I stood up and I threatened her," Hutchison remembers, still savoring his achievement sixteen months later. "I said if she dared not vote for the variance, we'd have the wrath of the PWA community down upon her. If it hadn't been for me standing up and sticking my neck out, the [project] would have been held up even longer."
Not only has PWAC grown in membership since its founding in 1989, Hutchison maintains that he and several hundred allies are slowly forcing the social service colossus into action. "We're getting results," he emphasizes.
Rather than thank PWAC, however, some members of the AIDS community are beginning to question the organization's tactics, its tendency to turn procedural disagreements into personal attacks, and the acrimonious tone of its newsletter. They condemn accusations that have been made against individuals who were too sick to fight back, or in one case, a man who sought to clear his name before dying. In the past several months, critics say, more energy has been devoted to internecine squabbling than to lobbying Congress to prevent AIDS funding cuts or combating prejudice against AIDS victims living in an unfriendly society.
In October two members of the council filed separate libel suits against Hutchison. At least seven PWAC board members have quit in the past year. A handful of former PWAC volunteers complain they have been barred from returning following disputes with Hutchison.
Two recent exposes published in PWAC's newsletter leveling accusations against Health Crisis Network and another group, Cure AIDS Now, have been particularly divisive. (Although the newsletter's circulation is only about 3000, it is read by many times that number.) In the December issue, an editorial signed by Hutchison denounced the organizations, along with other providers, for immorally profiting from AIDS:
"We suggest that the providers listen and listen well. They have not been listening at all, but that will no longer be tolerated by the CONSUMERS. That's us, PWAs. Before PWAC, the providers had an open playing field, and they had those of us dying from this horrible illness believing that they were our bosses, our benefactors, and that we had no other choice but to play by their rules. That was a pretty good intimidation tactic, and they even had PWAs believing it.
"The good old days are over. Now you will learn to play by our rules.... We are telling you, among other things, that we will no longer tolerate the following: #1) The outrageous profits from OUR funds going to runaway costs of the operations of YOUR businesses! #2) We will no longer be treated as second-class citizens, and your high-handed, disrespectful, rude, uncaring, discriminatory practices will stop! #3) We will no longer be limited to your 'internal grievance processes,' and complaints against you will be handled by our standards and not yours."
Hutchison then cited a cost analysis of local AIDS groups commissioned by the county and produced by Behavioral Science Research, a Miami-based management consulting firm whose clients include Fortune 500 companies, local municipalities, and government agencies. The analysis reported that Health Crisis Network bills the federal government $70 per hour for case management, the catchall term for helping people living with AIDS negotiate the social service system. Based on that rate, which until recently was the second-highest in Dade County, Hutchison then proposed a hypothetical budget: "Theoretically, an HCN employee/case manager works 40 hours/week. [If] HCN is paid $70 per hour, this means an income to HCN of $2800/ week. If HCN pays the case manager $500/ week, that translates into a gross profit of $2300/ week. If they have ten cases managers, that translates into $23,000/ week [or] $1,196,000 PER YEAR profit!"
In a claim both he and Suarez have repeated several times since, Hutchison also stated that dissatisfied clients have filed more complaints with PWAC against Health Crisis Network than any other organization. According to the editorial and follow-up articles, AIDS sufferers who are referred to Health Crisis Network by other agencies for services such as food vouchers are often turned away. Sometimes they are offered vouchers of a lesser value A $10 compared to $35 for its own clients. The reason, Hutchison concluded, is that Health Crisis Network wants to bill the government for case management, and can't do so unless the AIDS patients they help are registered as clients.
While Health Crisis Network has explained the discrepancy in treatment as a byproduct of limited resources, Hutchison countered that the agency has more than sufficient funds to serve all people afflicted with AIDS. "They want more money from the government. [They want a greater share] of scarce and limited care and treatment dollars! While making the PWA go without and wait for service A they sit on their large RESERVE FUND."
Published the week before the "White Party," the popular fundraising gala Health Crisis Network sponsors each year, the editorial struck the HIV-positive community like an eight ball breaking through pent-up indignation from those on both sides of the controversy.
Cathy Lynch, executive director of Health Crisis Network, immediately wrote a four-page memo to her staff refuting each allegation. In a recent interview at the offices of Health Crisis Network, located at 5050 Biscayne Blvd., she claims to have spent hours investigating complaints PWAC had filed on behalf of various clients of her agency. According to Lynch, none was based in fact.
"It's been frustrating because there is so much to do," Lynch sighs. A respected administrator who has spent the last twelve years working with local AIDS organizations, Lynch says the attacks surprised her all the more because Health Crisis Network has historically had good relations with PWAC. The two groups occasionally held joint staff meetings, and Health Crisis Network had supplied PWAC with a mobile HIV testing unit one afternoon per week. "You need someone who honorably, ethically, constructively, and truthfully points out problems," she asserts. "But this a witch-hunt."
"We need a PWAC," concurs Damian Pardo, president of Health Crisis Network. But as a self-styled ombudsman, PWAC should investigate the veracity of its allegations before publicizing them, he says. "It's not just HCN; it affects the whole community, because you create uncertainty. Donors think, 'Maybe I won't give to AIDS this year because I don't know who to believe.' Everyone loses a little bit of their credibility."
In a lengthy letter to Hutchison, Pardo requested a retraction on behalf of his agency. "In a time when increasingly conservative forces threaten much of the progress we, as a community, have made, you have chosen to slander members of the community you claim to represent," Pardo's letter stated. "YOU are not the exclusive voice of the HIV-affected community."
Hutchison responded with his own missive. "We have always, in many ways, clearly stated that we represent the PWA in crisis and are a voice for those afraid or unable to speak up against injustice...not the voice of the AIDS community," Hutchison stressed before returning to his mantra of wasted and misspent funds. "If community unity means ignoring misuse of government funds, loss of services to PWAs in need, in favor of payrolls, politics, and policies, helping to hide the fact A FACT A that many agencies have misused and continue to misuse these scarce government funds, slyly helping each other ignore injustices within the system because nobody's looking anyway, then you have a sadly skewed vision of unity." Hutchison refused to publish a retraction.
In addition to Health Crisis Network's costly case management program, the December newsletter cited another example of alleged misuse of federal funds: the food bank run by Cure AIDS Now, an AIDS organization providing counseling services and education, as well as deliveries to homebound AIDS patients. The article compared the cost of a basket of food picked up at the food bank with equivalent purchases at Publix and Hyde Park supermarkets. The markets yielded bills of $18.67 and $23.22, while Cure AIDS Now billed the federal government $36. The way Hutchison figures it, only 27 cents of every federal dollar given to the food bank goes to feed people with AIDS. "I'm sorry, but my conscience won't let me agree with that," Hutchison says with ecclesiastical conviction. "I must speak out, and I do."
Dominick Magarelli, executive director of Cure AIDS Now, rejects Hutchison's criticism. "The money does not go into our pockets, it goes to feed people," he says. "I have full-blown AIDS, and I have a deep sympathy for my clients. I would never let that happen." Magarelli also claims to have done his own price comparison and ended up with bills similar to those submitted by Cure AIDS Now.
"I'm not here to run a popularity contest," Hutchison responds with more than a trace of sarcasm. Still he asserts, "The masses are behind us." He points out that earlier this year the coalition purchased its three-building complex at 3890 Biscayne Blvd. by raising about $75,000 through private contributions and selling donated items at the organization's thrift shop. According to financial statements, PWAC's expenses of approximately $20,000 per month are predominantly covered by profits from the thrift shop, which is staffed almost exclusively by volunteers. Wages for a handyman and a delivery man come to about $4000 per month. Neither Hutchison, Suarez, nor any other member of the board draws a salary.
While the property purchase and the thriving business at the thrift shop stand as physical testaments to PWAC's support in the community, it is the hard-won shifts in government policy that Hutchison views as his greatest accomplishments. Following PWAC's articles and editorials about Health Crisis Network and Cure AIDS Now, the Metro-Dade HIV Health Services Planning Council in January imposed a cap of $50 per hour on case management charges. And last month, in a periodic allocation of unspent money, the council more than doubled funds available for food vouchers. It also required that two-thirds of the $150,000 in new monies allotted to the Cure AIDS Now food bank be dedicated to vouchers. Hutchison sees both decisions as PWAC victories. "The system is being changed," he argues.
But Joey Wynn, a member of the county's consensus committee who served briefly as president of PWAC's board of directors, says the group's accomplishments have incurred high emotional costs. He himself became a casualty in PWAC's crusade against AIDS service organizations when he nominated a slate of community members to run in elections for the PWAC board this past December. Incensed that Wynn's slate included employees of federally funded agencies (Wynn himself works at Mercy Hospital) and fearful that Wynn was trying to take over PWAC, Hutchison publicly denounced his former ally as "a blood-sucking, money-hungry provider." Recalls Wynn: "I just sat there dumbfounded. And I believe I said I thought he should receive mental counseling. How dare they treat PWAs as horribly as they accuse other people of doing?"
Other former board members, former volunteers, and community activists who have had close contact with PWAC also say Hutchison extracts a high price. For example, Jon Cullipher, chairman of the Metro-Dade HIV Health Services Planning Council, sued Hutchison for libel this past October. Cullipher and Timothy Koontz, who served on the PWAC board for a year and a half, say they were defamed by statements contained in formal written complaints Hutchison submitted to the council last July.
Joel Rappaport, who once chaired the advocacy committee at PWAC, says the latter dispute strikes him as a waste of resources. "Tim Koontz is not perfect," he allows, "but to expend the time and energy attacking people with AIDS who have no vested interest and are trying to do some good -- that's insane. Who's the enemy? They're eating their own."
Current members of PWAC counter that having AIDS doesn't necessarily mean someone is beyond reproach, especially if that person is making questionable decisions about public monies. "I get so ticked off at some the injustices I see and some of the things people do," Hutchison says, referring to his vitriolic remarks at council meetings. "I got really ticked off at Tim Koontz and Jon Cullipher. In reality I love them, but I just can't agree with not standing up against the system. I can accept them as they are and I can love them, but please, don't stand in my way when I have a cause."
It wasn't so long ago that Hutchison himself was very much a part of the system. Born and reared in Tampa, he moved to Miami 30 years ago and started a successful trucking company. He lived quietly with his mother until she died fifteen years ago. "Even after all these years, I still miss my mother tremendously," Hutchison says. "My mother and I were best friends. I have a life-size portrait of her hanging in my living room. She's like an icon to me."
The daughter of an independent oil producer, Hutchison's mother paid for the education of nineteen underprivileged children and was one of the first large donors to Oral Roberts University, her son recalls. Hutchison says he was always inspired to root for the underdog, but it wasn't until he reluctantly became involved in AIDS activism that he began to act on his feelings.
Hutchison says both he and his partner, Gene Suarez, learned they were HIV positive in 1987. While Suarez began obsessively attending informational meetings and support groups, Hutchison withdrew. "I just felt, 'I'm going to stay home and I'm going to get ready to die. I'm going to watch Oprah, Phil, Sally.' And I did A for months and months. I stayed home and watched T.V. I slept. I cleaned out the closets. And a few months went by and I wasn't dead, and then a year went by and I was still breathing."
Hutchison eventually began accompanying Suarez to meetings. The first time he went to PWAC he wasn't impressed by what he saw. "It was this seedy little place with two cardboard boxes of files and unpaid bills that were just piled on the floor," he says, his nose wrinkling at the memory. "And I thought this is a coalition of people who are dying of AIDS, and it should amount to something."
He eased into activism, participating in committees to find new office space and gradually learning how federal funding for AIDS is allocated and spent in Dade County. Suarez became president of the PWAC board, and Hutchison found himself inexorably drawn into a vortex of local government meetings.
The more he learned, the angrier he became. According to both Suarez and Hutchison, the social service system that had sprung up around the needs of AIDS patients wasn't simply confusing, it was ineffective and corrupt. Providers were sitting on county and state boards doling out money to their own enterprises without considering the needs of the infected population or the requirements of the Sunshine Law.
When Suarez stepped down, Hutchison took his place and the organization soon began to reflect his personality. "Gene keeps telling me, 'Chuck, you're too strong,'" Hutchison concedes. "He says, 'That letter is too strong. That article is too strong.' I do not make weak statements, I do not write weak letters, and I do not write weak articles." Nor does he banish those who disagree with him. The only people who have been barred from PWAC's property, he says, are those suspected of theft.
Bob Ladner, president of Behavioral Science Research, which has conducted several studies of AIDS providers at the behest of the county, says Hutchison tends to be his own worst enemy. "I'm in the strange position of agreeing largely with what PWAC says and disagreeing with how they say it," Ladner explains. "Sometimes I think they foam at the mouth a little bit. They report what they see, they overstate their case, and they scream when they should speak. But underneath it all, they are pointing to real issues. Are they obnoxious? Without a doubt. Are they right? Generally, yes."
Sitting in Hutchison's office at the PWAC complex, J.D. Ramsay, Gene Suarez, and Hutchison elaborate on their latest objective: to force providers to furnish receipts for every service they offer, whether it's handing over a food voucher or making a telephone call on behalf of a client. "This is my pet issue," says Hutchison, the stubborn set of his jaw conveying both the primness of a headmistress and the aggressiveness of a pit bull. "If Medicare and Medicaid providers are cheating the system out of hundreds of millions of dollars and they are keeping records and receipts, what in the world are these big agencies doing with [AIDS] millions where there are no receipts?
"We have evidence that the money is being abused," Hutchison continues. "I know for a fact that they're cheating, and I don't like it." By forcing the agencies to write out receipts to clients, Hutchison figures he'll either get the proof he needs to put fraudulent providers out of business, or the increased scrutiny will force them to come clean. "You know they are definitely out to do anything they can to shut up the Coalition," Hutchison adds, almost as an aside. "But we're a long way from being shut up, and we're getting things passed that are making them more and more furious every day."
Indeed, the anger is apparent at a meeting of the county's consensus committee this past week. Half a dozen members of the board of directors of Health Crisis Network have come to discuss the problems that have been publicized in the PWAC newsletter that prompted so much rancor at the committee's March 14 meeting. This time the room at Mercy Hospital is jammed with people as more than 70 supporters of Health Crisis Network and PWAC square off for a showdown.
One by one, disgruntled AIDS sufferers stand up to express their frustration. If they support Health Crisis Network by participating in its fundraising events, why have they been turned away when they were in need? "Those of us living with the virus, we all are equal," exclaims a tall black man who says he has been trying to become an HCN client for three years.
Sympathy is not running deep, however. Shortly after the man sits down, murmurs rise from the back of the room, calling for Health Crisis Network to respond. "The hostility in this meeting between AIDS organizations and PWAC is so thick you can cut it with a knife," announces a man named John. "This doesn't represent me," he says as he displays a copy of the PWAC newsletter. "We have enough problems in Washington without going after each other."
Hearty applause greets his remarks. "Whose fault is that?" someone shouts.
Lily, a client of Health Crisis Network, defends the agency. "If they just give out [vouchers] to everyone, then the clients wouldn't be able to get anything!"
Paul Crockett, a Health Crisis Network board member, asks for a show of hands from everyone who believes the agency's food-voucher policy is a vital issue affecting their lives. The room separates along fault lines of happy clients who are afraid of losing the services they receive and those who haven't been allowed to sign up. "I feel so guilty," Crockett confesses, his composure slipping. "It makes HCN out to be the bad guy." He doesn't have to repeat the arguments made by other board members: If Health Crisis Network opened its doors to everyone, it would risk not helping anyone. There isn't an apparent solution, and no one is feeling particularly generous tonight. "Personally it sickens me," Crockett says, "because we live in a hostile society."
Crockett sits down and the testimonials continue on both sides. Suarez searches for a consensus to end the meeting, and although the lines are still stubbornly drawn, one of Crockett's comments haunts the group: "What are we going to do to deal with this incredible epidemic?"
After board members from Health Crisis Network promise to try and increase access to their agency, the meeting finally adjourns. Inexplicably, a palpable sense of camaraderie sweeps over the crowd. Board members from Health Crisis Network and PWAC are among the last to leave. They gather together and talk about the meeting. They observe that after so many lonely years of activism, this has been one of the largest community turnouts. They hope for future cooperation. And they embrace before leaving the room.