Mornings are the hardest. On a good day, it can take two or three people to pry 36-year-old Deborah Crosby out of bed. This summer morning, Deborah’s sister-in-law, Denise, gives her a wake-up call at the ungodly hour of 6:30 a.m. Deborah’s man, Reginald Holdip, 51, gets up to help look for her little black purse while Deborah gropes around for her pills. She’ll spend the next two hours commuting to Harlem United Community AIDS Center, just to swallow them — because if she doesn’t take them under supervision, she might not take them at all. She moved recently to a quiet part of Queens, but Harlem’s where she has spent most of her life and where she still goes for most of her needs. “Basically, to remember my pills, that’s the big challenge,” says Deborah, who tested positive in 1994. “Put ’em in my little purse. It’s tiresome, at times, ’cause I get tired of popping pills, but it’s what I have to do to get my health back.” Her current CD4 count is 68. Her viral load? “One of them real high numbers.”
Once Deborah is ready, Reginald returns to bed, earning him a pillow whack from Deborah, a blow Reginald treasures. “You never know how she’s going to be from one moment to the next,” says Reginald. “When moments like that occur, you grab them.” In December 2001, a botched miscarriage led to PCP pneumonia for Deborah, which turned into an eight-day coma. Doctors thought she would die. Just recently, Deborah woke up with paralyzing neuropathy in her legs, and Reginald rushed her to the hospital, while her 3-year-old son, Calvin, pressed up against the window of their apartment and wailed.
Deborah met Reginald in 2000 at The Bridge, a Harlem mental-health center where she gets therapy. He’d just gotten out of jail for drug dealing; they’re both recovering crack addicts. He has been positive for 21 years, so he understands why mornings are so hard: “You get that little feeling inside—‘Am I ready to go through all this again? Am I ready to take all those pills again? Am I ready to go to group again? Am I ready to talk to the doctor?’” he says. “Am I really ready to go on with life, basically. And that’s why mornings are rough.”
While Deborah smacks Reginald with her pillow, Michael D., 44, is waking up in another part of town entirely, Manhattan’s Chelsea neighborhood. (Michael didn’t want his last name used because clients for one of his two jobs don’t know he’s positive.) At 7 a.m., he gets up to take Crixivan. He can’t eat for an hour afterward, so while his boyfriend, Rigo, walks Noodles, their chihuahua mix, Michael goes back to sleep. He rises again at eight, as Rigo leaves for work, to take Videx, which must also be taken on an empty stomach, but separately from the Crixivan. He waits another hour for breakfast: organic flax seeds, which he grinds every morning in his tiny kitchen, mixed with low-fat yogurt and maybe a piece of fruit. Michael’s dietitian suggested the seeds to counter his Crixivan-related high cholesterol. His doctor wanted him to take statin drugs instead, but he’s wary of adding another medication to the slurry of chemicals already filtering through his liver and kidneys. His CD4 count is about 375, his viral load undetectable.
Over organic coffee (“my big splurge,” he says), Michael reads The New York Times and the British Guardian. Of his morning routine, he says, “It’s a lot of coordination, but it’s OK—I’m used to it.”
Harlem and Chelsea, the worlds of Deborah and Michael, respectively, are a mere 20 minutes apart on the subway, but there’s a distance between them no train could ever connect. In April, when New York City’s health department released its AIDS surveillance and epidemiology report for the first quarter of 2002, Chelsea and Harlem more or less tied for first place in new diagnoses. Harlem, whose HIVers are predominantly black, had 236.9 per 100,000 residents, and Chelsea, whose HIVers are overwhelmingly gay men, was a hair behind, at 236.6.
The mortality rates, however, differed dramatically. For Chelsea HIVers, the death rate was 15.9 per 1,000 cases. The Harlem figure was nearly three times higher: 42.2. (The latest report ranks it first in the city, at 49.3.) Not all of those people necessarily died from AIDS, but enough to constitute a huge disparity in how HIV is being managed. A look at Harlem’s overall health profile shows that for adults, the death rate from “HIV disease” was 144 percent higher than the city’s overall. (Chelsea’s was 53 percent higher.) “One explanation for the high Harlem rate could be that more people there are being diagnosed with HIV later,” says one health-department official. “By the time they get into care, they’re sicker. And we know that the later you start HAART [under 200 CD4 cells], the less good your prognosis.”
Late diagnoses are especially high among blacks and Latinos. Of New York’s “trailing edge”—people who don’t get diagnosed until positive for 10 or more years—80 percent of the men and 92 percent of the women are black and Latino. “They’re the big public-health failure,” says Lucia Torian, director of AIDS Research and HIV Serosurveys for New York City’s health department. “They’re the only ones left on earth who are getting PCP.”
But that doesn’t fully explain why, in the world’s AIDS-services capital—a city where everyone, in theory, has access to meds and health care via Medicaid or one of the nation’s most generous ADAP programs—people in Harlem are eluding diagnosis and arriving at emergency rooms with full-blown AIDS. Why do residents in one neighborhood die while those in another thrive?
The answer likely lies less in where people are living than in how they are living. The parallel lives of Michael and Deborah, who have the same access to lifesaving drugs and the same relatively robust AIDS safety net, offer a window into New York City’s growing HIV chasm—and the nation’s.
Walk with Deborah down Harlem’s legendary 125th Street, and you’ll bump into three or four people she knows per block. At least one will say: “Hey, girl, where’s that five bucks you owe me?” She has little to spare: Her monthly income consists of $639 from disability, $139 in food stamps and whatever else she can scrounge up.
Deborah was born in Harlem’s Sydenham Hospital in 1967 to a devout Jehovah’s Witness mother and grew up in the projects. She was an athletic kid: track, swimming, basketball, running marathons. But at 20, she found crack, and that was it. “That drug is something else,” she says. “I would sell my body for a dollar just to get that drug.” During her 16-year crackhead career, she’s had 13 pregnancies, two abortions and numerous miscarriages—Deborah gets too upset to specify exactly how many children she has had because each child was born with drugs in its system and taken away from her. She has had PCP nine times. “I have nine lives,” she says. “With all the stuff I’ve done, I really shouldn’t be sitting here.” She once worked in various fast-food restaurants and department stores, but now staying alive is her full-time job.
Before getting into Harlem United, Deborah, whose care is covered by Medicaid, did what most in Harlem do: rely on the overcrowded, understaffed public city hospitals. “I used to have my primary care at Harlem Hospital, but I knew I was killing myself, because any prescription I asked for, they gave it to me,” she says. She’d sell it, and buy crack with the money.
But Harlem United makes her come daily and take pills under supervision. It seems to be working: After Deborah last left rehab, in May, her CD4 cells went from 16 to 68 in two months. She’s still fragile, though, with chronic bronchitis, pneumonia, an enlarged liver and neuropathy.
Her Queens-Harlem commute involves a bus and two long train rides. If the trains are packed, she stands for an hour and a half. Once, drenched in sweat, she stepped off the train to sit and rest, her head in her hands.
But the hardest leg of the journey comes when she leaves the subway at 125th Street and Lenox Avenue. Already drained, she walks a three-block gantlet past old friends, old places, old dealers. It’s hard not to slip. “Every day I come to the program, you don’t know how bad I wanna go around that corner and do my thing,” she says. “But I don’t.”
Though Michael lives amid Chelsea’s expensive co-ops, bistros and boutiques—products of the ’90s influx of prosperous gay men—he is far from wealthy. He and Rigo each make less than $40,000 a year. After his health insurance rose from $320 to $405, he needed Medicare to get by. (He’s eligible because he was on disability.) Michael will have it for one more year; he doesn’t know what he’ll do afterward. The only thing saving him from near-poverty is cheap rent. In a neighborhood where the average one-bedroom rents for upward of $2,000, his goes for less than $500.
He wasn’t always so lucky. In 1994, the year Deborah was diagnosed, Michael was unemployed, living in a fourth-floor walkup in the working-class neighborhood of Astoria, Queens. John, his lover of 13 years, was dying of AIDS. To get John out of the apartment, Michael would call his sister’s husband, who would bring a wheelchair and help carry him down the stairs. “Getting him to a doctor was a nightmare,” Michael recalls.
Michael was born not far from where Deborah lives. In the late ’70s, he learned typesetting from a job-training program for low-income people, and for a while made good money. But by the mid-’90s, computers had made him obsolete. Around the same time, John got sick, and after John died, Michael got sick too. From 1995 to 1997, he had Kaposi’s sarcoma. Doctors gave him six months to live. “Then protease inhibitors started to kick in,” he says, “and that was it.”
In August 1997, Michael met Rigo, who moved to New York from Venezuela in the early ’80s and has been positive for about a decade, at a Chelsea bar. They went home together that night and have been together ever since. “We’re both on the shy side,” Rigo says. “I had to work for it.”
These days, Michael is a freelance transcriptionist. His morning commute consists of walking from the kitchenette back into his bedroom. Underneath an Andy Warhol poster of Chairman Mao, he has made a little office: a Dell flat-screen computer, an ergonomic keyboard, a shelf full of books about yoga and massage therapy. At first, he didn’t like freelancing because he lacked discipline, but now he loves it, partly because he can work around his meds. “Even though I don’t get health benefits or vacations, I get my freedom,” he says. “And that leaves me very stress free.”
THE GROWING DIVIDE
The health department says Harlem and Chelsea aren’t the only disparity: Across the city, people in whiter, wealthier neighborhoods live longer than those in poorer, darker ones—even when the two are side by side. Next to Chelsea, the (also relatively affluent) Greenwich Village–SoHo area had the city’s second-lowest PWA death rate, at 12.2, while an adjacent district with a high concentration of public-housing projects had the city’s highest—at 43.9, almost four times higher.
And it’s not just black and white. Consider other high-mortality neighborhoods, like the South Bronx and Crown Heights, both heavily Latino. “When we start comparing Harlem and Chelsea, one of the first differences that jumps out to us is race,” says Juan Battle, a professor of sociology at New York City’s Hunter College. “But if you look again, there’s another difference, which is class.”
And it’s there, at the American juncture of race and income, where HIV diverges into a kind of apartheid. The divide may not be as stark as that between HIVers in the West and those in Africa or Asia, but it’s impossible to ignore. Middle-class HIVers (still mostly gay white men) reap HAART’s promise of a “chronic manageable illness,” while the underclass (overwhelmingly African American) often lives as if HAART had never arrived. “What you see in Harlem mirrors a lot of urban areas in this country,” says Carole Bernard of the National Minority AIDS Council. And the disparity between Chelsea and Harlem could as well be the disparity between Dupont Circle and Anacostia in Washington, DC; West Hollywood and South Central in Los Angeles; South Beach and Liberty City in Miami; tony Atlanta and large swathes of the poor, rural south, where AIDS rates are climbing.
According to the Centers for Disease Control and Prevention, between 1993 and 2001 (a span during which life-saving HAART was introduced), the deaths of PWAs nationally dropped by an estimated 75 percent among whites, but only by 50 percent among blacks. By 2000, AIDS rates (as opposed to just HIV) were nine times higher in blacks than in whites. Most studies have attributed such staggering rates to both late diagnoses and poor HAART adherence. But they are inextricably linked to poverty itself.
When poor people get sick, it’s often from causes that are impossible to untangle: years of cheap food; asthma from pollutants (most of New York City’s bus depots are concentrated in Harlem); IV drug use—which has little to do with race but does correlate closely with geography and class—that weakens their bodies and their resolve.
Most damaging: the lack of preventive care that comes from having no health insurance or high-cost insurance, and relying on the ER. Says Battle, “Poor populations don’t see the health care system as serving a preventive function—it’s serving a treatment function. So if you’re not sick, you’re not gonna go.”
And then there are the intangibles: depression; hopelessness; a corrosive distrust of the medical establishment. “You say one word incorrectly, and you’ve suddenly got a very angry client who’s ready to run out the door and never come back,” says Daniel Weglein, MD, Deborah’s doctor and Harlem United’s medical director. “It doesn’t matter how much services, treatment and counseling is out there if people aren’t ready to engage in care.”
“If you’re HIV positive, and you’re also homeless, and you have a substance abuse problem, and your children are in foster care, getting treatment for HIV is probably last on your list of priorities,” says Harlem United’s Cynthia Ceilan. “You’re either looking for your next fix, or trying to get your kids back, or trying to find a place to live.” Even when low-cost AIDS treatment services are available, poor people often don’t—or can’t—use them. If they do, the effort it takes just to stay “compliant” can be overwhelming.“Can we deal with HIV in poor communities without dealing with poverty?” Battle asks. “I would argue no. It hasn’t worked with high blood pressure, it hasn’t worked with asthma, it hasn’t worked with diabetes, and it won’t work with HIV” (see “Closing the Gap” below).
In Chelsea, Michael can meet all of his health-care needs within a couple of blocks, largely because of the epidemic’s longtime presence in the neighborhood—and the community’s effective response. There’s Gay Men’s Health Crisis, which in 20 years has evolved from a small band of well-connected gay men struggling to save themselves amid widespread indifference and hostility into a multitasking monolith that caters to a diverse range of HIVers from all over New York. (GMHC is helping Michael fight an eviction notice he got because of his chihuahua.) There’s Callen-Lorde, his excellent, gay-friendly community health clinic. But there’s also the McBurney YMCA, among the more modest of some dozen gyms in an extremely fitness-conscious neighborhood, and Whole Foods, a gourmand’s paradise where Michael buys fresh produce almost every day.
Today Michael has a special treat: a 90-minute Vinyasa yoga class at the YMCA. Afterward, he sits in a little café by the swimming pool. “I am very aware,” he says, “of how lucky I am to have all this.” Even Rigo, who just started prophylaxis because his CD4s dropped below 200 and he’s fighting discomfort, remains grateful. “I have to be on the upbeat side of life,” he says.
It’s a special day for Deborah, too; today, she has Calvin with her, and they’re going to McDonald’s.
Harlem has an AIDS infrastructure; Harlem United, for years the only area AIDS agency, is now among the largest of several in the neighborhood. But Harlem lacks Chelsea’s gyms, HIV-specializing pharmacies and health-food stores. Deborah can get nutritious meals at Harlem United, but beyond that, the pickings are slim. And Calvin craves the Golden Arches.
Just taking care of Calvin can wear Deborah out. “When she says she’s tired, it’s like a cry for help,” Reginald says. “She’s thinking, ‘I’m tired of hurting. I’m tired of not getting to be with my son all the time. I’m gonna die anyway, so what the hell? I’m gonna give up.’ That’s when depression kicks in.”
And that’s when Reginald will do something like cook a meal Deborah loves to bribe her into taking her pills. “You gotta go to extremes sometimes,” he says. “You gotta dig deep and find things like pillow fights, special meals. If you really wanna live bad enough, you’ll do whatever you need to do.”
Annia Ciezadlo has written on New York City neighborhoods for City Limits, Newsday and The New York Observer.
CLOSING THE GAP
There’s no quick, easy way to bridge the divide between America’s two worlds of HIV, but here are four places to start:
1. HELP PASS ETHA The Early Treatment for HIV/AIDS Act would let states offer Medicaid to folks before they are disabled by AIDS. This could cut HIV deaths among the Medicaid set in half. Visit www.taepusa.org for more action points. And keep fighting to save ADAP (www.atdn.org) while you’re at it!
2. SACK STIGMA It makes people delay HIV testing or travel miles from home for treatment in secret. New York AIDS Coalition’s Joe Pressley calls for prevention and education campaigns within the communities they’re meant to reach: “If we move away from that, we drag the epidemic further underground.”
3. GROW THE GRASSROOTS Stigma-busting groups are“struggling to stay alive,” says the National Minority AIDS Council’s Carole Bernard. Click “Public Policy” at www.nmac.organd read the letter in which more than 150 such agencies asked President Bush to stop defunding and bullying them. Write one ASO a check if you can. Better yet, lend your time or expertise.
4. REACH ACROSS THE GULF If life with HIV is treating you well, share your survival with someone who needs it. HIV newbies: Read Randy Shilts’ And the Band Played On to learn what your forbears went through. Veterans: Meet the epidemic’s new faces at www.blackaids.org. Everybody: Hear a new story. Challenge your comfort zone. Leave your neighborhood.
TRIAL AND TRIAL AGAIN
VaxGen’s vision may be a bust, but it’s not the end of HIV vaccine research—or good prevention:
LOCAL HEROES Neggies (guys and gals), check out www.avac.org; search “HIV vaccine” at www.clinicaltrials.gov; or call 1.800.448.0440 to connect to trial sites in your area for new vaccines. HIVers can do the same for “therapeutic” vaccine trials that may help fight the virus.
HERPES HELPERS HIV negative gay guys in New York, San Francisco and Seattle with genital herpes: Keep an eye out for ads announcing a study to assess the effectiveness of daily acyclovir at preventing HIV infection.