The Secret Epidemic: The Story of AIDS and Black America Paperback - 2005

From the jacket flap

Half the people in the United States who are diagnosed with HIV are now African American. Through the eyes of those on the front lines of the crisis, journalist Jacob Levenson tells a story of race and public health that spans fifty years and reveals how AIDS has become one of the leading killers of young black men and women. Medical researcher Mindy Fullilove investigates the epidemic's links to crack cocaine, the Bronx fires, and national health policy. Desiree Rushing must reconcile her crack addiction and HIV infection with the fate of her city, family, and the black church. David deShazo, a white AIDS worker in Alabama, fights to prevent the American South from becoming the epidemic's new epicenter. And Mario Cooper, a gay, infected son of the black elite confronts the boundaries of American race politics in Washington, D.C. Seamlessly interweaving personal stories with national policy, Levenson indelibly captures this devastating epidemic and illuminates its potential to expand our understanding of race in America.

Excerpt

CHAPTER ONE

Smoke

2000



WHAT IF THEY'RE DYING? What the hell am I gonna do about their babies? The questions raced through David deShazo's mind. He was chain-smoking Marlboros as he drove north out of Mobile, up State Highway 17 into the Alabama countryside. A black garbage bag stuffed with blankets, baby clothes, and toys took up most of the dusty backseat of his Pontiac. The car was cold and reeked of stale smoke; his heater was busted, and he didn't have the two hundred bucks it would cost to get it fixed.

It was eight-thirty Friday morning, November 10, 2000, and he was headed up to Choctaw County to find two black sisters who were infected with HIV. The girls lived with their mother and two baby sons down a dirt road somewhere outside Gilbertown, near the Mississippi border. The caseworker in Selma, who was supposed to be in charge of their case, had told David that morning that they hadn't been heard from in seven months. Now winter was coming, and as best he knew, they didn't have heat, a telephone, or a car to get to the doctor. He just hoped that neither of them had developed full-blown AIDS. He took a draw off his cigarette, squinted through his bug-smeared windshield at the two-lane highway, and tried to fight down a flickering current of anxiety.

His twenty-one years of social work had produced enough dark memories for David to be able to reassure himself that he was prepared for anything he might encounter. The memories had a way of floating through his head and calming him. Sometimes he could all but see that pretty brown-haired girl he was supposed to help at the mental hospital in Mobile. She had been molested and had sliced herself up with a razor blade until her face was a maze of long thin incisions. Other times he'd remember the elderly he tended to when he worked in home health and hospice, their eyes hollow and searching, as they died alone in old metal trailers scattered like lonely tin coffins across the Alabama countryside. The memories would come, and he'd be released from the anxiety. But sometimes, if he wasn't careful, he'd find himself haunted by the vague suspicion that he'd failed these people. The notion would float around the edges of his consciousness, eroding his confidence, before he'd reject it as irrational. Then he'd wonder whether the suffering these people endured was inevitable or whether somewhere along the line this country had failed them. For a moment he might be gripped by a confused anger over what had become of the Alabama of his childhood. More often, though, he'd imagine what could happen if AIDS continued to spread through the South.

He hadn't really known what to expect when Mobile AIDS Support Services (MASS) hired him to drive deep into the poorest black rural counties of southern Alabama to search out people infected with HIV, convince those he deemed candidates for infection to get tested, and warn others that AIDS was threatening to spread through rural Alabama. In the eighteen months since taking the job, he'd driven more than sixty thousand miles through forgotten Civil War-era towns, talking about the virus to just about anyone who'd listen. He'd caught hate stares at general stores and gas stations, and a county commissioner over in Wilcox had reprimanded him for discussing AIDS without permission at a church meeting. Recently in Coy there had been rumors of a retired army sergeant banishing his infected daughter to an abandoned trailer, then burning her possessions after she died. A few weeks ago the sheriff in Choctaw County offhandedly mentioned that if an infected prisoner ever tried to bite him, he'd empty his pistol into the man and take his chances with a local jury; and he'd heard a smattering of comments from whites that the "niggers" and "faggots" were just getting what they deserved. None of those things really surprised him, though. The silence that surrounded him in these towns unsettled him more. The vast majority of people regarded him with wariness, and often when he talked to them, it seemed as though he were shouting across some unbridgeable chasm.

This country wasn't the New South of peroxided blondes, baseball-cap-wearing teenagers, shiny-headed dads, and bowl-cut little boys, smartly dressed in candy-colored polo shirts, Bermuda shorts, and khaki pants. Nor was it the South of Ted Turner, the Atlanta Braves, Emeril Lagasse, and urban sprawl. That South was comfortable, packaged with the business traveler in mind in cookie-cutter whites, reds, and blues to look like Anywhere, America. This Alabama felt older to him: a place that endured mainly in black and white memories of Martin Luther King Jr. marching on Montgomery; Sheriff Jim Clark greeting civil rights marchers with tear gas, bullwhips, and nightsticks; or maybe George Wallace fervently proselytizing, "Segregation now! Segregation tomorrow! Segregation forever!" Those were the images rehashed on PBS, anyway. But even that wasn't the Alabama David recalled from his childhood in the 1950s and 1960s.

He'd grown up in Jackson, about fifty miles southeast of Choctaw County, and his softly lit memories had a more idealized, small-town American hue to them. Sure, his father, a country doctor, had had "colored" and "white" waiting rooms. David also had a hazy recollection of sitting next to his mother in the deShazo family's pink station wagon when the news crackled over the radio that Lyndon Johnson had signed the Civil Rights Act. She leaned back and wondered aloud why northerners always had to shove ideas down their throats. But that was just the way things were then. He was more likely to recall Carrie, the slender black woman who did most of the work raising the deShazo boys, and how much he loved her; the long rides out into the country with his father to tend to poor colored farmers; and how sometimes his dad would get paid, and other times they'd drive back with a sack of potatoes on the seat of the car and permission to hunt on the patient's land.

Alabama still possessed the same expansive, aching beauty of his youth. The countryside, with its withered cotton fields and mazes of creeks and rivers, felt timeless. An endless procession of churches--some wooden, airy, and antiquated, others no more than creaky one-room buildings--lined the roads, with signs that read out names like New Providence Baptist, Jesus Is Lord Old Zion Missionary, and Little Zion Baptist. They lent the region an air of being protected from the amoral advance of modernity. But it wasn't unchanged. Since taking this job, David had noticed something unsettled about these country communities. He had trouble capturing it in words, but it seemed inextricably bound to his work. The South was the new frontier of AIDS in America. More people were infected with the virus in the region than in any other part of the country. And now it was threatening to spread slowly and quietly through rural black Alabama.

David, perhaps more immediately than most public health officials, understood what could happen if the AIDS epidemic ripped through the poor black South. MASS employed five caseworkers who were responsible for roughly eight hundred clients in the city and its surrounding five rural counties. Eighty percent of their patients were black, and most didn't have private insurance, Medicaid, or direct access to the new drug cocktails. The caseworkers spent the bulk of their time just trying to get them more medicine. For the sixth straight year they'd exhausted their casework money early and had to cover payroll by patching together a series of small grants and private donations. They needed to hire more staff but could afford to pay people like him a salary of only $23,000, plus thirty cents for every mile he drove on mornings like this, to look for these two girls.

David crossed into Choctaw County, home to sixteen thousand people. Roughly half of them were black, and a quarter of the population lived in poverty. There were no hospitals or infectious disease doctors around here. The road was stained with burnt-orange dirt--clay that made the soil difficult to farm, leaving paper mills as pretty much the only industry in the area. A couple of logging trucks stacked with fresh-cut trees sped by in the opposite direction.

In a sense, David had replaced his father as the modern country doctor. Paying house calls with a clipboard instead of a black bag, he had the job of telling people that they were going to die, getting them on waiting lists for medications, rushing them to the hospital, and making sure they had heat and electricity. At fifty his face was finely lined, and his hair and mustache were a smoky gray. His teeth had yellowed, and he hid his brown eyes behind a pair of rose-colored prescription glasses. The simple way he carried himself in his uniform of faded blue jeans and wrinkled flannel shirts put people at ease. Still, the relationship he had with his clients was more complicated than the one his father had shared with his patients. All morning he'd been running cynical scenarios in his head about what to do with the babies if there was no food in the fridge, or if he suspected the sisters were prostituting themselves to pay the bills.

Gilbertown wasn't much more than a stoplight, a cemetery, a dollar store, and a Foodmart. Large houses soon gave way to scattered wooden shacks and trailers with rusted American cars parked out front. David slowed the car and made a right down a narrow, unmarked dirt road. He'd seen these girls once before, the previous fall, as a favor to the caseworker in Selma who was supposed to be in charge of their case. When he'd spoken to her on the phone that morning, she'd explained to him that she had stopped checking in on them because they told her they didn't need help. Legally, she was in the right. David, though, had a bit of a savior complex. He liked thinking that he had the skills to manipulate, beg, and cheat the welfare system to get the sisters the medications, doctors, and help that might save their lives. It was a shaky rush, one he rarely felt in other social work jobs.

He parked the car at an angle in front of the weather-beaten wooden porch of their white metal trailer, stepped into the crisp bright morning, climbed three rickety steps, and knocked on the door. A husky woman's voice bellowed for him to come on in.

Sara didn't recognize David at first when he pulled back the door, hastily strode to the center of the trailer, and set down his garbage bag. A rush of cold fall air swirled through the stifling living room, which was so hot that it was difficult to breathe. She casually continued to change her eighteen-month-old son, Benny Jr. Her hair was in long cornrows that gathered at her neck and ran down the back of her dirty Michael Jordan T-shirt. Rebecca's twenty-two-month-old son, William, was giggling and waddling back and forth in blue pajamas on the slanted linoleum floor in front of her. Clothes, empty soda cans, and an overturned tricycle cluttered the living room. There was a harsh cough from the attached kitchen. David glanced over. Rebecca was slumped over the back of a metal chair facing an open oven, trying to keep warm. She'd pulled a tattered yellow blanket up over her head, and it was difficult to make out her face. David introduced himself and asked how they were doing.

Sara glanced up from her baby, said hi, flashed a loosely confident smile, and tried to size him up. She'd had bad experiences with social workers. After she and Rebecca were diagnosed, a woman from the Choctaw County Health Department had shown up on Tornado Road asking all their cousins and uncles if they'd been sexually involved with Sara or Rebecca.

David said he'd brought some supplies, then abruptly started firing questions at Sara. What's your income? Have the babies been tested? Sara felt a flash of annoyance but answered anyway. Rebecca received a disability check, she told him, but she got nothing but food stamps. Neither of their babies had been tested in a while. What about insurance? David asked.

"I got to get some because that medicine is real high," she said.

"How long has Rebecca been like that?" David asked, nodding toward the kitchen.

"Something's messing with her eyes," she answered. "She been running a fever for three days."

"What kind of medicine is Rebecca taking?"

"AZT? I don't know," Sara said. "I could show you."

"You getting any medicine, Sara?"

"I get medicine while I'm pregnant, but I save it. I ain't going to get no more when I have the baby."

"You pregnant again, Sara?" he asked incredulously.

"Seven months," she said, shaking her head, smiling, wondering how he didn't notice.

David asked if they were still seeing the doctors in Waynesboro, Mississippi. Sara said yes but that they didn't have a car, and she'd missed her last two appointments because she didn't have any way to get there.

Rebecca coughed again--a coarse hack, heavy with phlegm--stood up, walked slowly past Sara, and pushed through the screen door. Sara went into the kitchen, opened a cabinet, and handed David a plastic basket packed with prescription bottles, many still in sealed boxes. Rebecca took some of them, Sara told David, but there were so many that the regimen often became confusing.

Sara told David that she'd been turned down for Medicaid before she got pregnant. Back then she'd been taking her sister's medications. Rebecca pushed through the screen door and collapsed on the couch with her yellow blanket. David asked Sara if her boyfriend had been tested. He'd tested negative a year ago, she answered, but he hadn't been retested since she got pregnant again. As far as she knew, Rebecca's boyfriend hadn't been tested, either. Then Sara told him that her boyfriend took some of her medications just to be careful.

"Does Rebecca use birth control?"

"Not anymore," Sara answered.

"Do you think she'd use condoms if I left you some?"

"Probably, 'cause one time we got a box full, and I hardly got any for myself," Sara said.

David started into a series of questions about the children but was interrupted by a visitor at the front door. Sara glanced over. It was her aunt Jesse, who was visiting from Mississippi and had dropped by to help with the laundry. Sara introduced her. Jesse nodded and made her way to the back of the trailer.

"I don't want my aunt to know 'cause she talks too much," Sara whispered.

The trailer was in chaos. Dishes were piled in the sink. A couple of flies buzzed around a cold plate of grits and sausage. The couch Sara was sitting on was filmy and damp. There were dark holes in the linoleum floor through which one could see the ground. As David continued to ask questions about the children, Sara rolled an empty medicine box back and forth beneath one of her bare feet.


From the Hardcover edition.

Media reviews

“Belongs up on the shelf with Randy Shilts's landmark work And the Band Played On. . . . A compelling feat of journalism: instructive, appalling.”–Dallas Morning News

“Sensitively rendered. . . . Artfully threads together the ways in which this horror came to be. . . . [An] important book.” –The New York Times Book Review

“It is not easy to write a book that convincingly explains why we should care about a particular crisis. But Jacob Levenson has done exactly that. . . . [He] has not only described AIDS and its shattering effects, but helped us imagine how the epidemic felt to real people.” –Newsday

“Ambitious. . . couldn’t come at a more important moment.” –The Seattle Times

“It’s an ambitious aim for any journalist to tell the larger political story alongside the personalized human one. But to manage it gracefully, moving among so many players and their respective positions, is a particular accomplishment . . . . Arresting.” –The New York Times Book Review

“Thoroughly researched and well-written ... convincing and nuanced ... important reading for people interested in gaining insight into AIDS in the 21st Century.” –Chicago Tribune

“Levenson broadens the view of the U.S. epidemic. . . A fascinating history. . . . Reads like a thriller, intricately weaving tales of individual characters.” –Baltimore Sun

“Like Randy Shilts in his groundbreaking And the Band Played On, Levenson writes in an informal, narrative style that concentrates on stories of individuals. . . . Levenson manages not only to tell us about these people, but to get inside their minds and hearts as well. . . . An important read, and a book that should be read by everyone in this country who is concerned about the AIDS epidemic.” –Baltimore Gay Life

“Levenson doesn’t use numbers to tell the story of AIDS in black America. Instead, he writes of lives touched by AIDS.” –Chicago Sun-Times

“An unflinching account that combines first-rate reporting and comprehensive research. . . . A must-read.” –Tucson Citizen

“Through the stories of these characters–told delicately and yet powerfully, with a mastery of language, imagery and pacing surpassing that of many novels, let alone works of nonfiction–we engage much more profoundly with the issues that shape this epidemic than we ever could with a simple policy book.” –Salon

“The importance of this book at this critical juncture cannot be underestimated. . . . The Secret Epidemic promises to open up the range of the public's vision and also public discourse on this public and private health crisis facing the African American community and, indeed, the country as a whole.” –Henry Louis Gates, Jr.

“Offers rich detail on how stigma can still compel people to die silently rather than seek adequate treatment.” –Out

“Reading more like a novel than an academic study, Levenson’s book sheds light on how dramatically the AIDS crisis is devastating the black community and how that community still struggles with how best to confront the issue.” –Detroit Metro Times

“A must-read. . . . A compelling, impassioned, and deeply humane work of writing and . . . an urgent, necessary alarm for anyone who thinks the AIDS epidemic in America has been tamed. Think of this book as the sequel to Randy Shilts's And the Band Played On--the arrival of a major author with a hugely important story to tell.” –Samuel G. Freedman

“Levenson forces us to face our own indifference to suffering. He explores the roots of that indifference and reminds us that ignoring distasteful facts merely exacerbates the consequences.” –Colorado Springs Independent

“Thoroughly researched, articulate presentations of facts in terms that are both human and broadly epidemiologic. . . . There is a cool ferocity to Levenson’s prose. The narrative is simple and straightforward. He doesn’t get in the way of his storytellers.” –The Plain Dealer

Citations

• New York Times, 02/27/2005, Page 24