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The Many States of HIV in America

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Science  13 Jul 2012:
Vol. 337, Issue 6091, pp. 168-171
DOI: 10.1126/science.337.6091.168

Treatment as prevention promises to help the infected and dramatically slow the spread of the virus, but the epidemic's changing demographics present myriad challenges in this diverse country.

In the spring of 2006, a year after Joshua Alexander took part in an HIV testing day at his college and found out he was infected, he tried to kill himself. He did not do it with a gun, a noose, or the tailpipe of a car. He chose instead to gulp down his entire supply of the anti-HIV drugs Truvada and Viramune.

Detention/retention.

HIV-infected inmates such as Rhode Island's Robert Quintana benefit from programs that link care on the inside and outside.

CREDIT: MALCOLM LINTON

Alexander, then 19 (pictured at right with his family), had taken time off from Delta State University after he learned of his diagnosis and moved back to his mother's home an hour away in Greenville, Mississippi, a small town bordered by cotton fields, catfish ponds, and an oxbow lake that branches off “Old Man River.” About one-third of the town lives below the poverty line, and an abundance of boarded-up shotgun shacks and cottages tilt on the clay soil. But Alexander's mother had provided well for her five children, and money wasn't his main issue—his version of the Delta blues came from what he called “the double negative” of his life. “On the one hand, I had the stigma of the virus itself, and on the other hand, people in church said you're damned because you're gay,” says Alexander, a devout Baptist. “There were some very, very gloomy times when I'd sit at home and get to thinking, ‘Why is this happening to me? I'm fighting a constant battle that I can't win.’”

Alexander soon vomited the overdose of antiretroviral drugs, and he now laughs about his “oxymoronic” attempt to commit suicide with the very drugs that he depends on to stay alive. But he, like many others, struggles to take antiretroviral drugs day after day, year after year. Efforts to help people like Alexander deal with their challenges have now moved to the top of the HIV/AIDS agenda in the United States.

Taking antiretroviral drugs as prescribed can fully suppress an HIV infection, keeping disease at bay for decades. There's another huge benefit, as well: A large study completed in 2011—Science's “Breakthrough of the Year” (23 December 2011, p. 1628)—provided irrefutable evidence that people who have undetectable levels of the virus in their blood rarely spread the infection to others. Yet as wealthy as the United States is, antiretroviral drugs are having nowhere near the treatment or prevention impact they could have on the country's epidemic. “We only have a little more than 1 million infected people in the United States, and per case, we probably have one of the highest expenditures in the world,” says Carlos del Rio, a clinical researcher based at Emory University in Atlanta. “We ought to be able to do something to stop the epidemic. But the problem is that it's not just a medical disease. In fact, the least of the difficulty is the medical part of the disease. It's the social, structural things that are driving the epidemic.”

This spring, Science met with HIV-infected people, at-risk communities, researchers, caregivers, health officials, and advocates in 10 cities, traveling to the Deep South and the West and East coasts to see the varied epidemics and the local responses up close. The package of stories on the following pages looks at everything from the social and structural issues to the medical and scientific challenges through the eyes of people on the front lines, as well as the research efforts under way to try to slow, if not one day bring to a halt, the spread of HIV.

Treatment cascade

When AIDS surfaced in the United States 31 years ago, it was largely a disease of economically stable, white, gay men living in big cities on the West and East coasts. But today, HIV disproportionately infects African-American men who have sex with men (MSM), like Alexander, and the epicenter of the epidemic is in the poverty-stricken Deep South. In addition to confronting deep-rooted homophobia and stigma for being infected, many face the added burdens of unemployment, homelessness, mental illness, incarceration, substance abuse, and lack of medical insurance and access to qualified care providers—all of which pose obstacles to even getting an HIV diagnosis, much less taking pills every day. “What's happening among young, black MSM in the United States jumps out and screams,” says Phill Wilson, a leading HIV/AIDS advocate who founded the Black AIDS Institute in Los Angeles. “We have the richest country on the planet, and you have a population impacted more than the poorest parts of the planet.”

Del Rio's work has helped popularize the notion of a “treatment cascade,” a series of factors that create a vast gap between HIV infection and control of the infection. Roughly 20% of infected people in the United States do not know their HIV status. Among those who do, many never seek care. Some see a doctor but fail to show up for subsequent appointments. Of those who start taking antiretroviral drugs, many have difficulty staying on them. Building on del Rio's earlier work, the U.S. Centers for Disease Control and Prevention (CDC) highlighted the treatment cascade in its 2 December 2011 issue of Morbidity and Mortality Weekly Report (MMWR), showing that of the estimated 1.2 million infected people in the country, only 28% receive medication, adhere to their prescriptions, and have fully suppressed viral loads (see graph, p. 171).

Sitting tall.

With his family's support, Alexander (right) has overcome his HIV-induced gloom.

PHOTO: MALCOLM LINTON
MAP SOURCE: AIDSVU.ORG

In July 2010, the Obama Administration issued the first-ever National HIV/AIDS Strategy, which lays out a plan for increasing the proportion of diagnosed MSM with undetectable viral loads by 20% within 5 years. The plan has the same goals for blacks and Latinos who are not MSM. “We need to focus our resources where the epidemic is,” says Grant Colfax, who directs the White House Office of National AIDS Policy. An openly gay clinician who formerly ran the prevention and research section of the widely praised San Francisco Department of Public Health, Colfax says hard-hit locales also have to spend more of their own money addressing the problem in their most affected communities. “There is no magic bullet here,” Colfax says. “Every epidemic is local, and we need to look at local solutions.”

Diverse drivers

With an adult HIV prevalence of 0.6%, the United States ranks 39th in the world, on par with many countries in Europe and Latin America. But because of the relatively large U.S. population of 311 million, only six countries have more HIV-infected people, and its burden matches that of Zimbabwe and Uganda. “I'm always taken aback by that,” says Wafaa El-Sadr, an epidemiologist at Columbia University's Mailman School of Public Health in New York City. “We don't see it that way because it's not evenly distributed: There are hot spots. There also are some populations, especially MSM, who have risks of acquiring HIV that are higher than in sub-Saharan Africa. Ask people on the street, and nine of 10 would say, ‘We took care of HIV, it's not a problem any more.’ And that's the problem.”

MSM accounted for 61% of the estimated 50,000 new infections in the country in 2009, according to the latest CDC figures. Heterosexuals made up the second-largest risk group, with 27% of new infections, and the remaining 12% were injecting drug users, or IDUs (3% of whom were also MSM). Although blacks make up only 14% of the population, they accounted for 44% of new infections. Rates of infection are six times higher for black males than white males, and black females have a whopping 15 times higher rate of infection than white females. Black MSM between the ages of 13 and 29 were the only group that saw an increase in new infections between 2006 and 2009; the number climbed by 48%. One in five newly infected people were Latino, which is also disproportionately high compared with whites.

CDC divides the United States into four regions—Northeast, South, West, and Midwest—to assess HIV/AIDS. “There are striking geographic differences,” says CDC epidemiologist Jonathan Mermin.

The Midwest has the fewest cases. In the West, five small neighboring states that together are home to under 5 million people—Wyoming, North and South Dakota, Idaho, and Montana—each report fewer than 1000 people who have a diagnosed HIV/AIDS infection, but California has 106,000, making it second to only New York (128,000). The South has the heaviest burden, with 43% of the country's HIV-infected people. A recent report about the HIV/AIDS “crisis” in the South by the Duke University Center for Health Policy and Inequalities Research in Durham, North Carolina, analyzed CDC data and found that the region has eight of the 10 U.S. states with the highest rate of new infections and the highest death rates from AIDS. Several cities outside the South have been hit especially hard by HIV, including New York, Los Angeles, San Francisco, Chicago, Philadelphia, and Baltimore, which together in 2007 accounted for 30% of all people living with HIV/AIDS. The virus also readily moves back and forth across the U.S.-Mexico border.

The drivers of spread in the country similarly differ from place to place. “It's not one U.S. epidemic; it's multiple microepidemics,” says Kenneth Mayer, medical research director at the Fenway Institute in Boston, which specializes in HIV-prevention studies. Mayer notes that transmission in many white and Latino MSM has links to methamphetamine and cocaine use, but drugs play only a small role in the Southern epidemic in black MSM, who often have their own insular subcultures and sexual networks. Women accounted for nearly 70% of the heterosexual spread, and 60% of those infections in 2009 were in black females, who have distinct sexual networks themselves. Needle-exchange programs have dramatically slowed the spread among IDUs in some cities, but bans on the use of federal and state funds for such efforts means that they are scarcely used elsewhere. Commercial sex work does not seem to be a major factor in the country, but recent studies are “sorely lacking,” Mayer says. Studies of transgenders are few, too, but those that exist indicate extremely high prevalence.

Plan man.

Grant Colfax oversees the Obama White House's HIV/AIDS strategy.

CREDIT: DARROW MONTGOMERY
Reaching out.

As men at the Sippi Citi club in Jackson, Mississippi, do a “strolling” line dance, a table in one corner staffed by My Brother's Keeper promotes HIV prevention.

CREDIT: MALCOLM LINTON

A plethora of research has focused on analyzing why black MSM and heterosexual women, particularly in the South, have become especially vulnerable to HIV. CDC's Gregorio Millett has closely examined the spread in black MSM, and his findings have challenged many hypotheses. As Millett and co-workers explained in the 15 May 2011 issue of AIDS, no studies have shown convincing evidence that black MSM have more partners or more frequently have receptive anal sex without a condom, both known risk factors for HIV infection. Citing data from a survey of nearly 10,000 white and black MSM who agreed to take HIV tests, the researchers concluded that the racial disparity in HIV prevalence had no link to incarceration or circumcision, either.

Several studies have reported that black MSM are more likely to have partners of their own race than are white MSM, and Millett's group concluded that this played a key role in explaining their higher prevalence. The researchers found a link between risk of infection and not knowing a partner's HIV status, and they also discovered that black men who knew that they were infected before the study were less likely to be on antiretroviral drugs than white men. This double whammy means that uninfected black MSM are more likely to have sex with a highly infectious man than are their white counterparts. Studies have also shown higher rates of sexually transmitted infections such as syphilis in black MSM, which eases spread.

Epidemiologist Adaora Adimora of the University of North Carolina, Chapel Hill, contends that the high rate of HIV in Southern black women reflects higher rates of concurrent partnerships—relationships that overlap—which is linked to the frequent incarceration of men that splits couples. In the July 2006 issue of Sexually Transmitted Diseases, Adimora and colleagues describe several studies that support this thesis, including one they did that surveyed HIV-infected women in North Carolina who had no link to IDUs or MSM. Of these 128 women, 37% had had concurrent partnerships within the past year, 89% said one of their last three partners was having sex with someone else, and 82% said one of these men had been incarcerated. According to the U.S. Bureau of Justice Statistics, one in three black men will be incarcerated during their lives, in contrast to one in 17 white men.

As racially skewed as the epidemic is, important factors in the spread of HIV are not confined to race, cautions Kevin Fenton, who directs CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. “When I think of the U.S. epidemic, it's easy to be seduced into the narrative of the epidemic in African Americans,” Fenton says. “But the real narrative is poverty, disenfranchisement, and a fragmented healthcare system weaving together to create big social challenges.”

Fenton points to a CDC study published in the 12 August 2011 issue of MMWR of nearly 15,000 heterosexual, non-IDU adults in 24 high-poverty urban areas. Study participants were predominantly black (72%), followed by Latino (18%) and white (5%). Nearly 2% turned out to be infected. The highest prevalence was seen in men and women who had lower socioeconomic status—regardless of race. Lack of a high school degree, household income below the poverty level, and unemployment were each independently associated with higher prevalence. “The social drivers are so powerful, and what's exciting about this is when you think through the social-determinants lens, the solutions become different,” Fenton says. “You can't just rely on testing, linkage to care, and treating people. It's necessary but not sufficient. Unpack these social determinants and there are new ways to tackle the epidemic.”

Rebooting

In response to the National HIV/AIDS Strategy, CDC has begun to reallocate how it supports U.S. HIV/AIDS work. In 2012, CDC shuffled $40 million of its $338 million budget to have more of an impact in harder-hit locales, and plans call for similar shifts over the next 4 years. CDC also launched the 12 Cities Project that, by the end of 2012, will have pumped $30 million of new money into improving the response in urban areas that have 44% of the AIDS cases. There's a concomitant push to cut funding to behavioral modification programs and ideology-driven work such as abstinence education. Instead, CDC wants more high-impact, cost-effective, evidence-based programs that link people to care, target MSM and drug users, and conduct testing at high-incidence locales.

Wilson of the Black AIDS Institute praises the national strategy for spelling out clear, interrelated goals, but he also worries about unintended consequences of the “medicalization” of prevention, as many of the black groups he works with don't yet have the technical capacity to work with clinics and may lose funding, Wilson says. “With HIV and AIDS, the messenger matters. Having institutions that are from the community and have its trust are critically important,” says Wilson. In May, the Black AIDS Institute's African American HIV University held a week long teach-in for community-based organizations from around the country to help them adapt to this new world in which treatment as prevention is king.

Homecare.

San Francisco General found patient Vanessa Romo this housing.

PHOTO: MALCOLM LINTON
Drop everything.

Of the nation's 1.2 million HIV-infected people, only 28% fully benefit from treatment

GRAPH SOURCE: MORBIDITY AND MORTALITY WEEKLY REPORT/CENTERS FOR DISEASE CONTROL AND PREVENTION
Cascade brigade.

Nurse Diane Jones's team at San Francisco General Hospital specializes in retaining patients in care.

PHOTO: MALCOLM LINTON

A key challenge for everyone working in the HIV/AIDS field is to find novel interventions that better address the treatment cascade. More and more clinics have begun working with navigators or mentors to help people overcome issues with housing, food, drug use, incarceration, and transportation. An increasing number of emergency rooms routinely test everyone for HIV. One large-scale clinical trial in Washington, D.C., and the Bronx funded by the U.S. National Institute of Allergy and Infectious Diseases (NIAID) is investigating whether offering financial incentives can help people control their infections. “This is a solvable problem,” says NIAID Director Anthony Fauci (see News Focus). “I mean, c'mon. It's a finite problem with a finite solution. So we can do it.”

Fauci, whose lab has made fundamental discoveries about HIV and the immune system, says researchers also have to adjust to this new era that is striving to figure out the best ways to apply existing tools. “The rush that you get out of discovery of something that you didn't know before is a very different feeling than the excitement you get when you see that if you implement proven things that you can actually turn the thing around,” Fauci says. “It isn't that kind of eureka moment. It's more of a cause.”

The cause also includes HIV-infected Americans, who from the start of the epidemic have had an astounding influence on both science and society's response to the disease. Alexander, who is majoring in social work, is part of the new generation of advocates, and he sees himself devoting his career to his version of the cause. “When I first found out I was positive, the social workers were awesome,” he says. “Now there are no text messages, smoke signals, nothing.” If he were a social worker, he's confident he could use his own experiences to help people through their tough times and to stay on their medication. “I'd like to do outreach to make people not feel bad about being infected,” Alexander says. “That's where my heart is.”

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