Photo Slideshow

HIV/AIDS in America

The HIV/AIDS epidemic in the United States today varies greatly from one locale to another—as does the response. Powerful antiretroviral drugs can reduce HIV to undetectable levels, staving off disease and slowing the spread of the virus, but fewer than one-third of the estimated 1.2 million infected people in the country take full advantage of the medicines. In the spring of 2012, Science correspondent Jon Cohen, working with photographers Malcolm Linton and Darrow Montgomery, explored the treatment and prevention challenges faced by 10 different U.S. cities, meeting with affected communities, clinicians, researchers, outreach workers, and public health officials.

Paula Pell, a nurse in Ward 86, the HIV/AIDS clinic at San Francisco General Hospital, works with a program that tracks down patients who don't show up for their appointments. Her mousepad says, "Ward 86: We couldn't make this shit up! " A sign on a bulletin board in the office says, "Well behaved women rarely make history." Pell and the other female nurses, social workers, and doctors who do much of the work in Ward 86 <i>have</i> made history, creating one of the most admired HIV/AIDS clinics in the world. [Credit: Malcolm Linton]Sandra Torres (right), a social worker with Ward 86, speaks with Vanessa Romo in her room at a hotel in the rough-edged Tenderloin neighborhood that houses HIV-infected people who were recently released from prison. Romo, 32, developed AIDS in 2009 and started taking antiretrovirals, but she was sleeping in abandoned buildings and smoking a lot of methamphetamine, so the pills went by the wayside.  "Being homeless, you have no responsibilities," said Romo, pictured here in May. "I stopped messing with the whole HIV business." A burglary conviction soon put her behind bars, and when she was released in November 2011, she lived under the ramp of the Alemany Boulevard exit of the U.S. Highway 101. In January, with help from Ward 86, she found this room and restarted care. Her viral load approached undetectable. By June, Romo had disappeared and lost her housing. [Credit: Malcolm Linton]Darnelle Hollie (right) lives with her husband and their son in Bayview at the southern edge of San Francisco.  "I've just celebrated 20 years with this disease," says Hollie. For several years after her diagnosis, Hollie said she received no care. "I thought I was going to die, and I constantly used heroin and smoked crack for 5 years straight," she says.  Then she went clean and started antiretroviral treatment. "Here I am, 15 years later, and I'm healthy as hell," says Hollie, who is a patient at Ward 86. She was taking antiretrovirals when she became pregnant, and had a C-section during delivery, which together nearly eliminate the risk of transmitting the virus to babies. Both her son, now 9, and husband are uninfected. At first, she says she didn't want anyone to know she was HIV positive. "I'm to the point now where I just don't give a shit," says Hollie. "I'm happy and have tremendous support." [Credit: Malcolm Linton]Jeff Sheehy, 55, was an All-state football player at his Waco, Texas, high school. To his family's horror, he stopped dating girls and came out as gay in 1979.  "This epidemic is my life," says Sheehy, who morphed from being an AIDS activist into the communications director of the AIDS Research Institute at the University of California (UC), San Francisco. He learned he was HIV positive in 1997 and took advantage of the potent antiretrovirals that had by then come to market. But he thought his days were numbered. "If you told me that at 55 I'd be married with a kid, I would have told you you were nuts," says Sheehy, who has a husband and a 7-year-old daughter they adopted. He says that when he walks through the Castro District, the city's main gay neighborhood, he doesn't see a lot of people his age. "My demographic is close to 50% positive," he says.  "I've lost a lot of my friends, and it's been such an integral part of my reality. It's overwhelming." [Credit: Malcolm Linton]Angel Ventura (right) works with the Center of Excellence for Transgender Health at UC San Francisco, which collaborates with groups such as the El/La Program, shown here, to promote HIV prevention and health education. "They provide validation for the community," says Anna Rivera (left), office manager at El/La, which specializes in helping transgender Latinas.  Transgenders of all races face intense stigma and discrimination. Rivera says translatinas come to El/La because they have the extra burden of language barriers, and the many who are HIV-positive—she has lived with the virus for 10 years—have to confront pervasive myths about the disease that persist in their own community. "Women feel safe and protected here," says Rivera. " I still can't believe my eyes and ears when I hear information about how HIV is transmitted. It breaks my heart." [Credit: Malcolm Linton]The Tijuana River canal behind these men runs along the border that separates San Diego, California, from Tijuana, Mexico. Many men have makeshift homes in the canal, and a husband-and-wife research team from UC San Diego includes some of them in their HIV/AIDS studies. [Credit: Malcolm Linton] Susi Leal, a former user who became a health  promoter, cleans the arm of one of the many users who hang out together at Tijuana River canal in Mexico that abuts the San Diego border. Leal works for a binational team of researchers based at UC San Diego that studies HIV/AIDS in the region. [Credit: Malcolm Linton]The black tar heroin that's popular here and in the western United States gums up syringes and needles, which has an odd benefit: They have to be cleaned frequently or thrown out after a few uses. The end result is that users who share needles are less likely to spread HIV than in places where white or brown heroin is more popular. Studies in Tijuana users have shown a relatively low HIV prevalence—for injecting drug users—of around 4%. [Credit: Malcolm Linton]Sergio Silva, 28, grew up in Santa Ana, California, about 100 miles north of Tijuana and was deported 3 years ago. "To me, that's home," says Silva. He first joined a gang when he was 10 and has had many run-ins with the law, including a 7-year stint in a Chino, California, prison. He has developed a heroin habit since arriving in Tijuana, and he regularly comes into a clinic run by a team from UC San Diego for HIV tests. Silva is negative, but he says he sometimes shares needles out of necessity. "Heroin is different from any other drug," says Silva.  "You don't want to get high. You have to get high. " [Credit: Malcolm Linton]Psychologist Thomas Patterson (left) and epidemiologist Steffanie Strathdee of the University of California, San Diego, have worked for the past 6 years with colleagues in Tijuana to elucidate how HIV moves around one region separated by a border that the virus does not see.  "HIV prevalence in Tijuana is slowly creeping up," says Strathdee. "We don't have the systems in place to test the people and to treat the people.  And the U.S., right on the other side of the border, unfortunately and unwittingly, is creating some of the problem because we're deporting the highest risk people, and we're providing absolutely no services for them and neither is Mexico. " [Credit: Malcolm Linton]Brad Croy, a security guard who just got off work, stops at a mobile HIV testing van in a Hollywood neighborhood that has several Latino-oriented—but not exclusive—gay bars. The van is operated by Bienestar, a group that does HIV/AIDS work with the Latino community.  Sandra Medina (left) and the other Bienestar staff members make sure that everyone tested sticks around for 20 minutes to receive their results, because if they go into the bars, they rarely return. [Credit: Malcolm Linton]My Brother's Keeper, a nonprofit organization here, does HIV prevention work with young, black men who have sex with men (MSM), and as part of that, the staff trains opinion leaders in a program called d-UP: Defend Yourself! These graduates of d-UP, which promotes condom use and awareness of social and cultural factors that contribute to risky sexual behavior, gathered at My Brother's Keeper to evaluate a survey being developed by the U.S. Centers for Disease Control and Prevention. The ecological survey assesses sexual behavior and HIV/AIDS and asks intimate questions, including the number partners they've had, the comfort and fit of condoms, and whether they routinely ask a partner's HIV status before having anal sex.  The group leader, Gerald Gibson (with cross) gingerly walks the group through this last question.  "When a person discloses, that takes a lot from them," says Gibson. "The first thing that individuals who are HIV-positive think is who's going to love me now? " [Credit: Malcolm Linton]After completing the survey evaluation, Ralphael Cooper (red hair) and other d-UP graduates like Lee Robins (in red shirt) went dancing at the Sippi Club, a gay bar on the outskirts of town. My Brother's Keeper set up an information table with free male and female condoms, as well as literature about HIV and other sexually transmitted infections. The club also staged a drag show that featured, among others, Ka'miyah L'Oreal Tymes (in drag), the reigning queen of Jackson Black Pride, which My Brother's Keeper stages in a hotel each year. "A lot of people look at us as celebrities of the community," says Tymes of the men and transgenders crowned at the event. But she also reserves female garb for the clubs.  "I live myself as a man," says Tymes. "This is the Delta. I can't be myself. " [Credit: Malcolm Linton]If all goes as planned, by the end of the year Mississippi will have its first clinic that caters to men who have sex with men, transgenders, and lesbians. The clinician behind it, Leandro Mena, notes that Jackson badly needs the facility as it's a gathering place for many young, sexually active people who attend one of the 18 colleges and universities in the metro region. "There's a very high STD [sexually transmitted disease] morbidity in the area, so you put students here and they catch them," says Mena, an infectious disease specialist and researcher at the University of Mississippi Medical Center. Given that chlamydia, syphilis, and gonorrhea infections all pave the way for HIV, it's a perfect storm of sorts for the AIDS virus.  Further complicating Mena's job, Jackson is all too similar to the rest of the Bible-thumping South when it comes to tolerance about gender identity.  He asks: "How do you persuade people who are sure they' re going to hell to protect themselves from HIV or to protect others? " [Credit: Malcolm Linton]Michael Saag (black shirt) and his team at the 1917 Clinic have a state-of-the-art electronic medical records system that allows them to closely monitor their patients. As of 19 June, they had 2019 active patients, and 71%—including Fred Allen (right), who has been treated here for 2 decades—had fully suppressed viral loads and were doing well. Allen, 51, has come in because he is having problems that likely are unrelated to his HIV. "For the majority of the people we see, HIV is not why they're here," says Saag. "If you're not a very good internist, you're not going to make it at this clinic. " [Credit: Malcolm Linton]Helping HIV-infected people with their housing might not seem connected to the country's efforts to use treatment as prevention, but Kathie Hiers says there's a direct link. "The reason only 28% of people have suppressed viral loads in this country is very complex, but do any needs assessment with the HIV population and housing is number one or number two," says Hiers, who is CEO of AIDS Alabama, a nonprofit that houses hundreds of HIV-infected people, and president of the National AIDS Housing Coalition.  She criticizes the federal government for not giving Alabama its fair share through Housing Opportunities for Persons with AIDS (HOPWA), a program run by the U.S. Department of Housing and Urban Development. HOPWA doles out 25% of its $299 million budget to 29 metropolitan areas with at least 500,000 people—Birmingham doesn't qualify—that have higher than average incidence. The other 75% goes to the same 29 cities and the rest of the country based on cumulative AIDS cases, which Hiers wryly notes includes "608,000 deceased people who already have their housing." David Vos, who oversees HOPWA, notes that Congress mandates this allocation strategy. "We share the view that we need to modernize this," says Vos. [Credit: Malcolm Linton]Patrick Robinson (left) and Rashawn Edwards share a room in a substance-abuse treatment facility run by AIDS Alabama, and they have much more in common than an address and histories of cocaine addiction. Both have wrestled with mental issues, are HIV-infected, and prefer to be seen as women, though they do not wear female clothes while in treatment. Edwards says he has battled depression and tried to kill himself by jumping off the Edmund Pettus Bridge in Selma.  "I was smoking crack after I found out I was positive, and it took its toll." Robinson did a prison stint for kiting checks, which he used to support a serious clothes and jewelry habit. "It's expensive to be a woman," he says. "I pray to God to deliver me from dressing in drag." [Credit: Malcolm Linton]On 8 August 1986, Janet Johnson gave birth to a son, Gary (pictured on wall). There were no medications then available to treat an HIV infection, let alone to stop the spread from a mother to child, and Gary was infected at birth. "I wanted him to live as normal a childhood as he could," says Johnson, a recovered injecting drug user who now works as a peer mentor for the 1917 Clinic. "One day out of the clear blue, he said, 'Mom, do I have AIDS?' " remembers Johnson, who was taking him to yet another doctor's appointment. "I pulled over because that isn't a conversation to have while driving.  He said, 'The kids at school call me The AIDS Boy. But I don't have it, do I?' " She gave it to him straight. "I told him that he did have AIDS, but it was not his fault," she says. Gary died from AIDS on 16 April 1999, just shy of his 13th birthday. [Credit: Malcolm Linton]Derek Jobe (l) and Darian West, enjoying sangrias after hours, both worked as research interviewers at Emory University’s School of Public Health for the recently completed BROTHERS Study. BROTHERS, which took place in six cities, stands for Broadening the Reach of Testing, Health Education , Resources and Services for Black Men Who Have Sex with Men. In short, it tested men for HIV and tried to see whether offering peer health navigators could help infected people receive the healthcare they needed. “In our community, men don’t go to the doctor for anything—high blood pressure, cholesterol, HIV, anything,” says West. On top of fear and mistrust of doctors, many of these men also blame the messenger when they learn they are HIV positive. “The way they see it, they were fine until they got the ailment from the diagnosis. BROTHERS plans to report its findings next week at the International AIDS Conference in Washington, D.C.Josiah "Jody" Rich, a clinician and researcher at Brown University, stands in front of the Intake Service Center (corrections-speak for jail) in Cranston, a short drive from Providence. Rich travels here once a week and to the nearby prisons to care for HIV-infected inmates, and he has created one of the country's most progressive programs that integrates treatment on both the inside and outside. [Credit: Malcolm Linton]John Codeiro, an HIV-infected inmate at the minimum security facility here for men, has an undetectable viral load and his immune system shows no obvious damage from his infection. "HIV has been the least of his problems," Rich says, who has cared for Cordeiro on the inside and the outside since his diagnosis during lock up in 2001. Cordeiro has a long history with drug addiction and explains that when he's on the street and strung out, he stops taking his medication.  "At that point, being dead is what I want for myself," he says. "This place has saved my life. It's a blessing in disguise, so to speak." [Credit: Malcolm Linton]For Robert Quintana, not having to stand in line each day for his antiretrovirals makes a big difference. Instead of being allocated a single dose each day, Quintana has a supply of the drugs that he can "keep on person," or in prison shorthand, KOP. He likes the level of trust that KOP implies and the convenience of not having to wait in the "med line." While some HIV-infected inmates also want the privacy that comes with KOP, that doesn't matter to Quintana, who is open about his status and even discusses it with other infected inmates. "HIV, it's no big deal," says Quintana, who is 1 year into a 5-year sentence for burglary. "You're going to have to accept me for who I am." Brown University's Josiah Rich, who treats inmates here, notes that one study found significantly lower adherence for inmates who did KOP versus those who received drugs each day in the med line. But for the right patient, Rich says he prefers KOP because it more closely resembles what they'll do after they leave.  "There are no med lines in the community," says Rich. [Credit: Malcolm Linton]The Methadone Maintenance Treatment Program at Beth Israel Medical Center in New York City runs 18 methadone clinics, and this one on 25th Street is open afternoons and early evenings to accommodate the many clients who work. Methadone, which substitutes for heroin and other dangerous opiates, allows people to function normally—and also, as an oral medication, removes needles from the equation and eliminates HIV transmission risks that are common among injecting drug users. The clinic has a medical doctor on staff, and the program offers a range of services including counseling, primary care, and help reuniting users with their families. "Our patients are not just getting X milligrams of methadone and going on," says William Julian, the assistant director of operations. Thanks to the success of these clinics and needle exchange programs, HIV prevalence in the people who come here has dropped from a high of about 50% in the early 1980s to about 5% today.  And all HIV-infected clients receive patient navigators to help them stay on treatment for that disease. [Credit: Malcolm Linton]Lynette Green, 46, receives a $70 Visa card for having a fully suppressed viral load. Green is part of a large-scale clinical study known as HPTN 065 that's taking place here in the Bronx and in Washington, D.C. The study, funded by the National Institute of Allergy and Infectious Diseases, ultimately wants to determine the best ways to reduce the amount of virus circulating in a community; it is one of the most ambitious real-world tests underway of treatment as prevention. "I've been admitted to the hospital 20 times, and I thought I was going to die," says Green, who also has kidney failure and uses an oxygen tank. "Every time I hear that I'm undetectable, I want to cry." [Credit: Malcolm Linton]In 2011, the Lower East Side Harm Reduction Center took in 200,000 syringes and distributed 250,000 clean ones. A "peer exchange" allows individuals to take out as many as 500 syringes at a time to distribute to other users, which totaled 10,000 last year. [Credit: Malcolm Linton]Behavioral scientist Susan Sherman (pictured) of the Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland, studies the sexual health risks on The Block, a stretch of East Baltimore Street that has two dozen strip clubs. Sherman and doctoral student Pamela Lilleston interviewed 140 exotic dancers, bartenders, doormen, and owners over 2 years, and they've published four papers now that document an open secret: Many of the women sell sex, and a high percentage use drugs, which also are readily available on The Block. "Look at this: It's right across the street from City Hall," says Sherman. "It's so known that they're selling sex, and with selling drugs, it's never a great scene for women." One of few ongoing studies of sex workers in the country, Sherman hopes to soon start assessing HIV prevalence and incidence in the dancers. She hopes her work will trigger a conversation in the community about how to improve the safety and health of the women who work in strip clubs. [Credit: Malcolm Linton]Between September and December of 2011, behavioral scientists Danielle German (left) of the Johns Hopkins Bloomberg School of Public Health and Jamal Hailey of the University of Maryland School of Medicine, both in Baltimore, worked together on a study that assessed the HIV prevalence in men who have sex with men.  As part of that, they went to venues such as gay bars in Mt. Vernon, a gay neighborhood. In keeping with  similar surveillance projects that have been published, they found that 42.4% of the men were infected and 69.6% didn't know their status. Hailey says there's a fragmented prevention effort taking place. "There are wonderful people working in the community who care a lot and are trying really hard," Hailey says. "But in terms of a tangible and strong community response, we have a long ways to go before we have what we'd love to have." [Credit: Malcolm Linton]As part of the Recapture Blitz program, Stacy Roberts (left) and Robin Thomas of the Family and Medical Counseling Service, went to the home addresses of HIV-infected patients who did not show up for appointments and were considered "lost to follow up." This day, they went to three homes and didn’t find anyone—and were told at the door of one that the person didn’t even live there. "I really don’t like to give up on people," says Thomas. [Credit: Darrow Montgomery]Since October 2010, the Penn Branch Department of Motor Vehicles has offered HIV testing onsite through the Family and Medical Counseling Service. The innovative project—which lets people keep their places in line to renew driver’s licenses and such—is part of the city’s push to find all HIV-infected people and link them to care. About 30 people volunteer each day, and although the tests find only about one infection per month, the project aims to help promote testing at other venues. [Credit: Darrow Montgomery]Epidemiologist Tiffany West, who runs the HIV/ADS strategic information bureau in Washington, D.C.'s Department of Health, points to a map of the city that shows different levels of the virus by neighborhood. Her team can chart this "community viral load" because the city requires labs to report results from tests of individual patients. The hope is that identifying areas with high community viral loads will improve targeting of services to people who, for whatever reasons, have trouble taking their antiretrovirals day in and day out for the rest of their lives. [Credit: Darrow Montgomery]
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