Notes from the Dead Zone
Vanessa Mills regularly drives her black Jeep to places in Miami not hospitable to a lone woman, or a lone man, for that matter: a trash-pocked lot on NW 17th Avenue, a dilapidated wood-frame house on 81st Street, a garage behind a mostly vacant strip center. Mills will park and walk down an alley or behind an abandoned cargo container, to where she expects to find a girl she knows. More often than not the girl will be where Mills encountered her the week before, head bobbing and mouth twitching a little from the crack, waiting in the company of four or five other people, all of whom Mills knows by street name. This is another day at the office for Mills, a skinny, intense woman with braided hair, lopsided smile, and mournful eyes. Another day to fortify herself with the hard lessons she learned years ago as she was hauling herself out of these very places. Mills understands it won't work to try to change the people she encounters here. But now she can be an ally who, when the time is right, can lend a hand, prod this young black woman to face the truth -- that she's not just courting her own premature death, but helping AIDS decimate her own people.
In another fifteen or twenty minutes, the girl, Tonya, will run silver gloss over her lips, shove some fancy clips in her hair, and prance out to the sidewalk (followed at a discreet distance by her man) to begin work in the midmorning heat.
Mills greets the group and gives a quick toss of the chin. "Hey, Tonya, I needta talk to you." And they'll stroll over to a shady spot near the Jeep, where the girl relates her latest personal and health difficulties and why she wasn't around a few days earlier when Mills came by to take her to her doctor's appointment. She was in jail, Tonya relates, and no doubt it's true. Back when Mills was using, she spent quite a few nights locked up.
Mills hands her several condoms, which she shoves down her tank top. Mills adds she'll come back tomorrow to drive the girl to the clinic, and again Monday morning for the SINGS (Sisters In Need Gathering Strength) workshop, a breakfast and support group that meets weekly (lured, Mills acknowledges, by the free food) at an unmarked strip center storefront on NW 22nd Avenue. And she will hug Tonya, climb back into her car, and head a few blocks away to find another woman who is reluctant to be found. Another one skeletal with AIDS, another African-American woman who is getting tired of being on the street, tired of feeling so bad and working so hard for nothing more than one rock after another, knowing she'll only get sicker if she doesn't do something to help herself, but with no idea where to begin to break the cycle.
This is what Mills and her business partner, Petera Johnson-Hobson, specialize in, reaching into unsalvageable lives and occasionally saving them. Their fledgling nonprofit, Empower U, Inc., housed in that anonymous storefront on NW 22nd Avenue, is one of several small AIDS service organizations that have lately emerged in Miami's poorest African-American neighborhoods. The work these street-level outfits do is labor-intensive, frequently discouraging, and potentially dangerous. It's also, in the opinion of most AIDS activists, the only way to get at an array of social and economic conditions that encourage the epidemic that is ruining black lives at a frightening pace.
The so-called dead zone at the heart of Miami, mainly the ZIP codes 33142 and 33147, encompassing parts of Allapattah and Model City, is where the AIDS epidemic has hit harder than anywhere else in Florida. Miami, after all, claims the nation's highest per-capita rate of AIDS infection, a statistic that obscures a worse reality: Blacks of all national origins account for more than half (published statistics range from 51 percent to 56 percent) of all AIDS cases in Miami-Dade, despite constituting just 20 percent of the population. No other ethnic group in the county is so affected; in fact, the incidence of AIDS among Hispanics, while increasing, is relatively low (57 percent of the Miami-Dade population accounts for 32 percent of AIDS cases). Similarly African Americans are contracting AIDS at a faster rate than other ethnic groups: In 2001, 168 out of 100,000 blacks had the disease, according to county health department statistics, while the rate was 31 and 25 per 100,000 for Hispanics and whites, respectively.
From the beginning of the epidemic in the early Eighties, people of color in general have had higher infection rates than whites. Nevertheless the greater number of AIDS cases initially was among white, middle-class gay men, who quickly mobilized to form strong advocacy, treatment, and education networks. It wasn't until the mid-Nineties that the public began to learn about the severity of the crisis among heterosexual minorities. Yet the overall amount of money spent on HIV-AIDS treatment and prevention, $14.7 billion nationwide (according to government figures), has remained stable for the past several years (and this year the Florida Legislature reduced AIDS spending). Thus in many areas competition for funding, always highly political, inevitably has pitted ethnic groups against each other. Meanwhile more minority-sensitive efforts and billions of dollars have barely slowed the HIV infection rate, which in many areas continues to rise among blacks and Hispanics. (On South Beach, the rate of new infections among young white men is as high as in Liberty City, according to the nonprofit South Beach AIDS Project.)
The picture is complicated in racially polarized Miami-Dade, where white Hispanics predominate numerically, politically, and economically. Here an ethnic group that is disadvantaged and often disenfranchised in the rest of the nation is a well-organized ruling elite. As such Hispanics hold a political advantage when it comes to soliciting AIDS funding. For example, according to the 2002 Miami-Dade HIV/AIDS Partnership Needs Assessment by the consulting firm Williams, Stern & Associates, Hispanic clients last year received 37 percent of medical services paid for by a major federal program, Ryan White Title I. The needs assessment noted Hispanics made up 29 percent of the county's reported AIDS cases in 2001. At the same time both black and white nonHispanic AIDS patients received relatively smaller percentages of Ryan White Title I benefits: African Americans and Haitians, 55 percent of 2001 AIDS cases, received 49 percent of the services; whites, 16 percent of cases, got 13 percent of the services.
On the other hand, under a different funding category, Ryan White Title II, black organizations in Miami-Dade received almost twice as much money as white and Hispanic service providers. (Apart from Medicare and Medicaid, which pay for the majority of AIDS treatment and prescription medicines, $6.3 billion annually, the Ryan White CARE Act passed by Congress in 1990 provides the largest portion of public funding -- $1.9 billion -- under four different categories, or titles.)
By all accounts the distribution of AIDS assistance in Miami-Dade is far more equitable than just a few years ago. Changing attitudes and increased publicity highlighting the severity of the epidemic in black communities have improved the lot of black AIDS activists and organizations. Still blacks working for parity in the AIDS arena also have to build what they've historically lacked -- political clout.
"It's always the squeakiest wheel that gets the most grease," points out Philip A. Hilton, a senior vice president at the National Black Leadership Commission on AIDS in New York. "If you have a vocal population that votes cohesively, you have the greatest ability to come together to utilize the political process in a way most advantageous for your community, especially if you have people in positions of power who look like you, who know where the skeletons are buried, who can ask the right questions and get the proper responses [during competition for grants] -- that makes all the difference. Many [black] communities just aren't there yet."
But once they get there, a new difficulty may await -- backlash. Successful black organizations are often seen as threats to white and Hispanic agencies. The increased inflow of resources to the black community, allowing new organizations to start up and older ones to expand, sometimes is made possible by diverting resources from other groups, especially since new AIDS funding is scarce. This past March in Broward County, a rare public disagreement erupted after gay white activists accused African-American and Hispanic interests of unfairly taking money away from successful gay-run programs. Blacks and Hispanics, in turn, complained whites were blocking federal aid money from going where it was most needed. In the end, the money went where the numbers were -- to the minority communities. All the hard work done by gay men in the Eighties now has paid off in lower infection rates, but also in a declining base of support. At least three venerable gay organizations in Miami-Dade have shut their doors during the past five years, victims of the changing times: Body Positive, People With AIDS Coalition, and Health Crisis Network. About a year ago gay activist Luis Penelas, brother of county Mayor Alex Penelas, became executive director of a four-year-old AIDS nonprofit, Union Positiva. Penelas worked long hours securing hundreds of thousands of dollars in grants for new outreach programs into the Hispanic community, which, like the African-American community, struggles with deep cultural and religious stigmas attached to AIDS. Penelas went before the county commission last year to ask for funding for an educational campaign. "My reasoning was for the last three years the black community had been receiving a total of $300,000 to do AIDS prevention, and Hispanics had not received anything," he explains. "The incidence [of AIDS] for Hispanics is still rising. That's how I got a grant for $100,000."
But this year Union Positiva will not get that money, since the commission reduced funding for many newer nonprofits. Penelas says he understands the urgency of the crisis in Miami-Dade's black neighborhoods, but he laments post-9/11 cutbacks that he believes have disproportionately hurt efforts to reach Hispanics with AIDS.
In Miami-Dade, where racial tensions usually stay just barely concealed, there are white and Hispanic AIDS workers who believe growing black clout has helped undermine the older gay groups or won funding at the expense of nonblack organizations. "I've heard the stories," confirms Kevin Garrity, executive director of the South Beach AIDS Project, which serves a mostly white and Hispanic gay clientele. "I know some people feel that way. There's a problem of a feeling of entitlement in most of the AIDS community. But I don't buy it. I feel we're only entitled to what we earn, and if a program is based on sound science and gets results, it will get funded."
What resentment there is on all sides, however, remains under the surface, rarely acknowledged publicly. "It's sad to say this off the record but I have to live in this community," offers an advocate with long experience in the AIDS field. "I want to live in this perfect world, can't we all get along, but the underlying thing is there is hidden racism going on, because historically all the funding has been attuned to gay white men and their organizations, but when the epidemic changed [black] people said, 'We're 20 percent of the population but make up 51 percent of the epidemic,' and I thought when other people saw that they'd say, 'Yeah, we need to do something,' but instead they're feeling threatened and think we want to take away their funding. So we don't say anything for fear of offending. I struggle with this daily, how much I'm going to say, how much I'm going to be party to. I actually feel I'm part of the problem, because I don't want to lose my job and everything else I have in Miami-Dade County. It's a very tight circle, and it's not that the powers-that-be can [retaliate] -- they will."
As an alleged example of retaliation against the "threat" of a successful black organization, this advocate and others point to the six-month-long, still ongoing, audit of Minorities Overcoming the Virus through Education, Responsibility and Spirituality (MOVERS). The eight-year-old Liberty City nonprofit is the state's largest black-owned AIDS service provider with a budget of about four million dollars. Regardless of the outcome of the audit, conducted by the Florida Department of Health, MOVERS' reputation and ability to attract funding may be hurt. Both MOVERS' executive director, Patricia Kelly, and its founder, Rev. George McRae, declined to speak to New Times until the audit is finalized.
Some within the black community have taken MOVERS' current travails as an opportunity to turn against the politically connected organization, alleging nepotism and misuse of federal funds. It may be logical to assume an audit that has continued for several months will produce evidence of financial improprieties. Supporters of MOVERS fear any defect could be used by government funders or regulators to take over the operations and, in the words of one MOVERS employee, "destroy the cultural integrity of the largest African-American organization totally dedicated to HIV-AIDS." By now MOVERS has become an institution, serving thousands of clients each week and benefiting from the prestige of McRae, pastor of Mt. Tabor Baptist Church in Liberty City and one of the first authoritative voices in Florida to call attention to the AIDS scourge among African Americans.
"We should be backing [MOVERS] right now," asserts the anonymous AIDS advocate, "but because of our jobs we're afraid to speak up. The kind of damage this [audit] could do, even when you come out with a clean slate, there'll be a gray cloud still hanging over them. It's already planted doubt, and you know how gossip and innuendo spreads. And everyone knows if the health department does that to MOVERS, which is recognized as a leader, it opens the door for everyone else, and then what happens to smaller organizations?"
Thomas Liberti, chief of the Florida health department's Bureau of HIV/AIDS in Tallahassee, says MOVERS is undergoing a "review," not strictly an audit, an evaluation that is necessary and not unusual for an agency that receives millions of dollars in public funds.
The AIDS Biz
"HIV-AIDS is a multimillion-dollar business, so it's competitive just like any other business or conglomerate," says long-time activist John Muhammad, currently chairman of the Miami-Dade HIV/AIDS Partnership, an appointed body established by the county commission to make funding distribution recommendations. The partnership has limited control over a large portion, but not all, of the approximately $127 million in federal funds going to service providers throughout the county. "It's survival of the fittest, and people in the African-American community have to come together. If people don't fight for their life they're going to lose it. Our [infection] numbers are going up and that's a clear indication there's something wrong. At the same time, because of the politics involved, a lot of [black organizations] would like to scream about the inequalities, but there's the fear if they start complaining too much there'll be a backlash. Maybe we'll lose even the little we do have.""Competition for the pie is part of the problem," says David Harvey, executive director of the AIDS Alliance for Children, Youth and Families in Washington, D.C. "The rest of the problem is longstanding systemic issues in our health-care system. Minority AIDS organizations have a lot of infrastructure and capacity-building needs. We have health facilities for the poorest of the poor, who are the ones now getting HIV, that are under-resourced. So you put HIV on top of institutions that are already being stressed, and you've got a real problem."
Adds Hilton of the National Black Leadership Commission on AIDS, "Look at all the other things that simultaneously affect our community. Problems with housing, education, violence, with just being poor, what poverty does to a community. If your life is already in chaos, you got four or five kids, you don't know where your car note is coming from, you don't have the wherewithal to jump up and scream for equity in AIDS funding. Let's talk about higher rates of infant mortality, women dying of childbirth, we can go on and on. If you look at the numbers, the people getting sicker and dying quicker, they're going to be of African descent. One of the reasons AIDS has established such deep roots in our community is because you're talking about people who are already weakened."
In 1998 President Bill Clinton and the Congressional Black Caucus established the Minority AIDS Initiative as an emergency response to the incommensurate rise in HIV infection among blacks nationwide. Beginning in 1999 the MAI began funding programs targeting African Americans, Native Americans, and other minorities, including Hispanics.
Though the MAI accounts for only a fraction (almost two million dollars) of the public money going to AIDS programs in Miami-Dade, it has meant crucial support for several African-American organizations and the Center for Haitian Studies. Most of Empower U's budget comes from two MAI grants totaling $105,140; it's the nonprofit's first government funding. Other organizations with a white Hispanic client base received more than $500,000 in MAI funds.
Many in the African-American AIDS community were angered by an action taken several months ago by the City of Miami, which administers the $12 million federal Housing Opportunities for People With AIDS, or HOPWA, program for Miami-Dade County. The city unilaterally diverted $500,000 in HOPWA funds to three agencies -- the largest chunk, $187,000, to a for-profit Hispanic company, Saber Consulting and Management Corporation -- to conduct AIDS education programs. That is not forbidden by the HOPWA regulations, but it did appear inappropriate to the U.S. Department of Housing (HUD), which had received numerous complaints and subsequently ordered Miami officials to reinstate the housing money. The city and HUD are currently negotiating the reinstatement.
Nevertheless support for AIDS treatment, research, and prevention programs appears halfhearted in Washington. AIDS funding has remained flat and some existing programs and policies are under attack from conservative interests. "You've got more organizations and there are more [people with AIDS] coming into the medical care system, so you're actually looking at an overall decrease in monies," explains Petera Johnson-Hobson, executive director of Empower U and director of education and training for Florida AIDS Action, a statewide lobbying group. "It's gone past being a racism issue; it's a federal funding issue, and I don't know if there will ever be enough now to go around. We're going to have to look at other funding streams, like foundations, become innovative in how we do business."
Johnson-Hobson and Empower U may have to look with yet more urgency now that the Bush administration is questioning the legality of the Minority AIDS Initiative. In light of recent court rulings dismantling affirmative action policies, the qualifications for receiving MAI funds may be eased, thus potentially allowing nonminority organizations to compete. However, according to some AIDS experts familiar with the issue, nothing has yet been decided in Washington (officials with the U.S. Department of Health and Human Services, which administers the MAI, did not return numerous phone calls).
The administration has also ordered the U.S. Centers for Disease Control and Prevention to audit AIDS prevention programs in several states, while promoting sexual abstinence and, according to a dispatch last month by the Associated Press, deleting information about condoms and sex education from the CDC Website. The government scrutiny of prevention programs, which one San Francisco official called a "witch hunt," was spurred by revelations that AIDS aid was used by one organization for shopping sprees and tickets to Disney World. Some lawmakers have also questioned the use of CDC money for sexually explicit educational seminars and workshops.
Those laboring in Miami's inner-city trenches don't have to worry about conducting workshops for their clients -- it's hard enough just finding them to tell them the results of their HIV tests. The Florida Department of Health, with the support of the CDC, sends hundreds of outreach workers into the streets each month, often in large vans equipped with educational literature, condoms, oral HIV testing kits, nurses, and counselors. The HIV test is now usually performed in about five minutes with the subject standing right there at the street corner, market, or bus stop. The worker hands him a swab, sort of like a Q-tip, which he holds in his mouth and then pops into a plastic tube filled with a preservative solution. The sealed tube is sent to a lab. The results come back in two weeks, and the workers who administered the test go back out with the good or bad news. By then a lot of subjects, most of whom are also drug users with unstable home lives or no home, have disappeared.
In a matter of weeks, when a new instant-testing kit comes on the market, the result will come back in only about an hour, thus largely solving the problem of low "returns," in AIDS lingo, and revolutionizing the entire testing process.
For the past four years, despite -- perhaps because of -- aggressive testing, the number of new HIV or AIDS cases in Florida has remained at about 5000. That's almost an eighth of all new cases nationally, about 42,000, a number that has also stayed static. Last year Florida health department laboratories processed 271,000 HIV tests (officials don't know how many tests private labs accounted for but estimate roughly the same number). A fair portion, some 4300 state-funded tests, were performed out on the streets of Model City, Little Haiti, Allapattah, and Overtown by MOVERS outreach workers. MOVERS was the single most prolific tester in Miami-Dade, aside from the county health department itself. From its beginnings in 1991 as a ministry of Mount Tabor Baptist Church, MOVERS has grown in a separate nonprofit, employing 80 and operating Liberty City's only physician-staffed medical clinic solely for AIDS patients.
MOVERS is where Vanessa Mills, Petera Johnson-Hobson, and dozens of others getting back on their feet after a long slide into addiction and AIDS, were first employed to seek out and counsel the disappeared souls they themselves used to be. It was a risk that MOVERS executive director and co-founder Patricia Kelly, then and now a nurse at Jackson Memorial Hospital, has taken hundreds of times. Her best hires, she insists, have been the men and women with the most troubled backgrounds, including criminal convictions. (Johnson-Hobson has been arrested for cocaine possession but not convicted, and Mills has several burglary and trespass convictions; records for both have been clean for more than a decade.)
"I don't have college-educated people knocking on this door," Kelly remarked a while ago. "Our ministry is to give people a second chance. We're the ones who got them off the street and got them into treatment. If you don't give that person a second chance nobody else will. We have more men with questionable pasts working for us than in the history of any agency. They feel valuable for the first time in their lives."
About twenty blocks south of Mt. Tabor, at Brownsville's Gamble Memorial Church of God in Christ, Patricia Seabrooks, wife of the associate pastor and also a nurse, had started AIDS awareness classes for church members in 1986. "I'd been to two funerals of people who died of AIDS, but no one would acknowledge it," Seabrooks recalls. "At the second funeral the pastor even said the man did not die of AIDS -- it was diabetes and heart trouble. That day I decided I had to do something. I couldn't take the fact that members were dying without the support of the church." The next year Seabrooks received a small grant from the county health department to expand her classes to other black churches. The Rev. Juanita Mincey of Christ Crusaders Family Center in Opa-locka was the first pastor to invite Seabrooks over.
Today Seabrooks, now with a Ph.D. in nursing and a nurse practitioner, is executive vice president of operations and development for Christ Crusaders, Inc. The four-million-dollar nonprofit operates several programs geared toward the needs of Opa-locka's impoverished residents (almost a third of the predominately African-American municipality lives below the poverty line); it is one of the few places in the Opa-locka/Carol City area offering services for people with AIDS.
Headquartered in a block-long barracks-like building on NW 135th Street, Christ Crusaders is in a dusty section of warehouses, garages, gas stations, and a Burger King. Even the grassy, rutted lot on the west side of its building looks desolate.
During Christ Crusaders' back-to-school health fair, though, the lot brightens up under a colorful inflatable children's playground, a tent shading a network of tables and chairs, and a barbecue grill. Gospel music blasts from speakers as mothers lead their excited youngsters over to the spot where Pat Seabrooks, clad in her Army Reserve fatigues, is giving immunizations. The shots dull the children's enthusiasm for only a few seconds, though, and then they're skipping off to the big green-and-yellow inflatable trampoline and slide. And Seabrooks can get to the real point of the health fair: The free music, food, and shots are a vehicle for getting the word out about HIV and AIDS. A group of her fellow reservists shows up every year to help hand out literature, condoms, and information about testing and medical and social services.
The worst problem for these local residents is access to many essential services, AIDS-related and not. "You have to travel to find a bank, a grocery store," observes Seabrooks. "To take care of your health as a person with AIDS, you have to leave your community. You have a choice to either move out of your community, or take public transportation. It's a great hardship."
Christ Crusaders caseworkers must refer their HIV-positive clients to other parts of the county for medical care, prescription medication, food vouchers, and rent and utility assistance. To see a doctor or for lab work, they'll have to go to Jackson or Economic Opportunity Family Health Center, or MOVERS; then usually they'll have to travel even farther away to Mercy Hospital in Coconut Grove to pick up their medications (for a large portion of AIDS patients in Miami-Dade, Mercy is the only supplier of subsidized prescription AIDS medicines). Christ Crusaders has applied to participate in the government's food voucher program for the past several years, according to Reverend Mincey, but always was denied because the organization doesn't have a track record of receiving food vouchers. Mercy Hospital, however, is awarded so many vouchers it often sends a portion up to Christ Crusaders. "They don't have the clients," Seabrooks says, "whereas smaller organizations such as ourselves can't show the actual numbers we serve." Like the back-to-school health fair -- no one counted the people dropping over. "The larger organizations hire people to keep track of clients, but we can't afford to pay someone to just sit and take numbers."
On the Street Again
When outreach workers talk to anyone on the street, even if they decline to be tested and maybe just want some condoms, the workers try to get them to fill out a so-called contact sheet for the health department (or ask questions and fill in the sheet themselves, seeking facts and figures about a person's social, economic, medical, and sexual history). Not everyone wants to fill out the form, and sometimes, finding themselves in the midst of a milling crowd of drunk or drugged street entrepreneurs, workers simply don't have the opportunity to fill every line and check every box.Petera Johnson-Hobson, a 40-year-old former cruise-ship singer with a beauty-queen smile and smoky voice, rides out one morning with some of her new outreachers to a spot in Liberty City near D.A. Dorsey Educational Center. On a corner in the shade, a group of teens (AIDS is rising most precipitously among 16- to 25-year-olds) appears to be waiting for a bus. Johnson-Hobson, even in jeans and T-shirt exuding some glimmer of her past glamour, bounds energetically toward the young people, starting to speak before coming to a stop on the curb. "Hey y'all, we're talking about HIV prevention. Our community still hasn't addressed it like we should."
One kid gets on a bicycle and rides slowly off; a few act as though no one is talking, but two girls in tight, faded bell bottoms and tiny T-shirts pay close attention. "You wanta be tested, sweetie?" Johnson-Hobson asks.
"Even though I use condoms I still got reason to be worried," one of the girls confesses, fingering a smooth curl of black hair at her neck. While an Empower U worker fills out a health department sheet on her, her friend watches languidly as Johnson-Hobson gets into a detailed discussion with an older man who's wandered over to the corner. In contrast to the neatly, fashionably dressed teenagers with clean, sulky faces, this man looks exhausted and wears a soiled white dress shirt and too-long khaki pants with dirt stains on the knees. "Say," he says quietly to Johnson-Hobson, after pocketing two long strips of colored condoms. "What about oral sex?"
Johnson-Hobson doesn't miss a beat. "Well, you can get infected from the saliva, but there are condoms for women. It's like a thin little sheet. You put it over the vagina. It works just fine."
The man looks down at his hands, mulling it over. "So that's what I need to do," he says.
"Now you really need to take precautions," Johnson-Hobson affirms, flashing her smile. "Weekend's coming up, you want to have a good time, but you gotta be careful."
"What if I don't have no female condom?"
"You can also use Saran Wrap, you know," Johnson-Hobson replies.
"I take it --"
"--and you put it there, over the vagina, it's very thin, still got your sensation --"
"Um hm," the man says. "Thank you. I appreciate that." And he ambles across the street, into a little market.
At the front door of the market, a jittery young man in baggy jean shorts is having a long one-sided conversation with another Empower U worker, who listens respectfully. He's already given the kid several belts of condoms. "Look here, it's a jungle out here," the youngster exclaims, nodding his head and rubbing his hands together, sweaty and shiny under the bright sun. "If you don't play fair you got bad karma."
The worker purses his lips in agreement, keeping an eye on his outreach partner talking to a woman and her daughter a few parking spaces away. It is time to move on to another street corner, but his jittery friend is still getting to the point of his discourse.
"Look here," says the man, "I need me two dollars."
At that, Johnson-Hobson appears and pauses, about to open her car door. She glances at him, sizing him up in a split-second. "I need me three dollars," she replies, and for another instant everyone stops to think that over.
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