The Changing Face of AIDS
"I was sleeping around with people to fit in. To build up my self-esteem. I knew what I was doing, but I wasn't taking ownership of it," says Nathaniel Marshall, matter-of-factly. "To fit in is every young person's dream, but it's another thing when you compromise your integrity."
With an ease gained from telling his story for a living, Marshall describes the situations that left him 21 years old and HIV-positive. Now 24 and a peer advocate for HIV-positive and at-risk youth on Chicago's South Side, Marshall hopes his story will keep other youth from making the harmful choices that he did. "When a youth sees someone in their age range say, 'I'm HIV-positive,' it makes them stop and say, 'OK, that could've been me,' " he says. "If I can touch one person's life, I have done my job -- two lives, I'm ecstatic."
When Marshall discovered he had HIV in March of 2000, he joined one of the 20-year-old epidemic's hardest-hit populations: young, black, urban men who have sex with men but don't necessarily identify themselves as "gay." In 2001, the Centers for Disease Control and Prevention (CDC) released a study indicating that as many as 30 percent of young, urban, African-American men who have sex with men were HIV-positive. From CNN to the New York Times, the media reported these alarming numbers and speculated about how they got so high so suddenly. But to many AIDS service providers and gay activists, the numbers came as no surprise. "There is a crisis among young men," says David Munar of the AIDS Foundation of Chicago. "Probably 12 to 15 years ago, we knew that this is where the epidemic was headed." HIV-positive author and activist Chris Bell blames the media for failing to sound the alarm about the HIV rate among young black men. "The thing that really galls me is that it isn't a new statistic," he says, but only now have the media "decided it's a worthy population to look at."
For many working in HIV/AIDS prevention, the numbers underscore an unfortunate truth: Because many young black men who have sex with men don't identify themselves as gay or bisexual, they are a difficult group to reach. Innumerable factors play into this difficulty, including racism, class bias, and homophobia. "It's not like there's really one thing," Bell says. "It's the culmination of all that."
The CDC based its estimate on a six-city study in Baltimore, Dallas, Los Angeles, Miami, Seattle, and New York. The study found that Latinos are also disproportionately affected, with infection rates of up to 15 percent for young, urban men who have sex with men. Though Chicago was not one of the cities included in the study, service providers and advocates have said they believe the numbers there probably conform to those found by the CDC. The Chicago Department of Public Health estimates 28,000 HIV-positive people live in the city, with 7,000 to 8,000 unaware of their HIV status. Of the 1,300 African-American men diagnosed with AIDS in Chicago between 1997 and 1999, nearly 43 percent reported unprotected sex with another man as their likely mode of transmission.
AIDS has hit the entire black community disproportionately hard, regardless of gender or sexual orientation. African-Americans are 15 percent of the population in Illinois but make up 45 percent of all AIDS cases. AIDS is now the leading cause of death for African-American men between the ages of 25 and 44. If the HIV infection rates suggested by the CDC study are indicitive of all of the country's urban centers, it would mean HIV infection rate among young black men who have sex with men may be 30 percent -- as bad as infections rates in sub-Saharan Africa.
'Like a plane hitting the Twin Towers'
When HIV and AIDS first emerged in the United States more than 20 years ago, the epidemic struck first and fiercest at two populations -- white gay men and intravenous drug users of all colors. While the government was slow to respond, the gay community reacted quickly, building an infrastructure of resources and support, including the founding of organizations such as Gay Men's Health Crisis (GMHC) in New York City in 1982.
Frank Oldham Jr. remembers the early days at GMHC and the mood in the gay community at the time. "What was happening then is not happening now," he says. "Gay men were immersed in AIDS intervention and prevention. It became the norm to practice safe sex. [We] eroticized safer sex. I believe that for a period of time this saved lives."
Oldham recently stepped down as executive director of Horizons Community Services, a gay and lesbian agency on Chicago's north side. He is also the former head of the Chicago Department of Public Health's division of HIV/STD/AIDS, and he has worked on AIDS prevention projects for New York City and Washington.
Oldham says the figures for young black men have left him reeling. "As an African-American gay man -- and I am HIV-positive -- it's like a plane hitting the Twin Towers," he says. "You mean to tell me that our programs are so ineffective that we can't reach African-American men? That's an abomination."
Early AIDS prevention messages were targeted heavily at the white gay community, leaving the rest of country -- including blacks -- convinced that AIDS wasn't their problem. Marshall, the peer advocate, acknowledges that he knew about HIV and AIDS before he became infected but said he considered it to be a "gay white man's disease."
He remembers having a strong reaction to the film, "Philadelphia," in which Tom Hanks plays a gay, HIV-positive attorney who accuses his law firm of firing him because of his HIV status. "I was scared to death," Marshall says of the film, yet he walked away thinking, "that's not going to happen to me."
Munar, of the AIDS Foundation of Chicago, says minority populations fell through the cracks early on. "We were late in getting to people of color," he says. Once it became clear that the numbers had shifted, activists and advocates found that the same methods used to reach white gay men just wouldn't work in other communities.
A Question of Identity
Because so many young black men who engage in sexual activity with other men don't identify themselves as gay or bisexual, public health messages targeted to gays don't reach them.
According to the CDC's 2001 multi-city study, black men were the most likely to be infected with HIV and the least likely to know that they were HIV-positive. Another CDC study released at the International AIDS Conference in Barcelona, Spain, in July 2002 reported that 91 percent of the young, black, HIV-positive men didn't know they were infected.
Young black men engaging in risky sexual behaviors lack the infrastructure found in the white gay community, where early outreach efforts were aimed at bars, bathhouses, and community centers. "In some ways, it's really true that there's nowhere for them to gather," Munar said. "The (public) congregating places aren't in place."
The heterosexual black community is gradually, and increasingly, responding to the HIV and AIDS crisis -- though with nothing approaching the fervor of the gay community.
On Chicago's South Side, Trinity United Church of Christ's HIV/AIDS Support Ministry was founded in December 1993 by a black woman whose brother had died of AIDS and who was frustrated by the lack of support and acknowledgement in the church community. Other churches have also begun to address the issue. Marshall says he has been continually surprised by the support he has received at Sweet Holy Spirit Full Gospel Baptist Church, another large African-American congregation. His pastor, whom he had been afraid to tell of his status, simply told him, "We don't care about the disease, we care about the person."
The most visible effort in the black community is being led by the Rev. Jesse Jackson and his civil-rights organization Rainbow PUSH. For the last several years, PUSH's annual convention in Chicago has featured a televised forum on HIV and AIDS that is shown on cable's Black Entertainment Television (BET). Jackson has also headed several public calls for widespread HIV testing in the black community, often getting black ministers to join him as he submits to the test himself.
However, most HIV prevention efforts in the black community are aimed at heterosexual women -- the newest "innocent victims" of the epidemic -- while demonizing those who many blame for bringing the disease into the black community -- men who have sex with men. Even public health prevention messages are not immune from this bias. In the spring and summer of 2000, the Chicago Department of Public Health rolled out an HIV prevention campaign targeted at women of color. One of the campaign's billboards featured a black woman in the foreground of a photo that included two shadowy black men standing ominously behind her. The billboard's tagline suggested that women should be aware of all of their partner's partners and included a helpline phone number. The ad angered many in the gay community, who objected to the ad's unspoken indictment of black men who have sex with both men and women. What is necessary, they say, is to challenge the prejudice that compels many men to keep their intimate relationships with men secret.
Author Chris Bell, who tested positive for HIV when he was 23, says the black community isn't yet ready to address sex between men as openly as it should. "There's always a fine line between what you can and cannot do," he says, "but there is no line between who can and can't get HIV."
'On the down low'
"Men on the down low" is an expression heard often in discussions of HIV and AIDS in the black community. The phrase refers to heterosexually identified men who have sex with men on the "down low" -- hiding their sexual relationships from their friends, families, and, most importantly, wives and girlfriends. The phenomenon is more common than many might think. One study published in the April 2002 edition of the Journal of Acquired Immune Deficiency Syndromes sheds light on the sexual behaviors and identities of a select sample of young black men in Los Angeles County. Among men who identified themselves as heterosexual, 31 percent of those who were HIV-positive and 16 percent of those who were HIV-negative reported having had anal sex with men. In the same sample, 46 percent of the HIV-positive men and 37 percent of the HIV-negative men also reported having had anal sex with women with "infrequent condom use."
The black press and entertainment industry have sensationalized this phenomenon, which has become the subject of novels and TV shows, in an effort to attract a black female audience. Black activists seem content to make so-called down-low men the scapegoat, blaming the epidemic's spread in the community almost entirely on them, however falsely.
Activist and HIV-prevention educator J.L. King, himself formerly a man on the down low, is a popular speaker and author in the black community who talks openly about the down-low phenomenon. King, who appears at conferences around the country, collects fees of up to $10,000 for his talks. His workshop topics include "Five Personality Types of Down-Low Men" and "Down Low on the Internet." His workshops balance prevention messages aimed at down-low men, the women they sleep with, and the public health providers attempting to reach them.
Still King, through his Web site, www.livingdownlow.com and through his booking agent www.blackspeakers.net, perpetuates the idea that black men who have sex with men are entirely to blame for HIV and AIDS in the black community. King's biography on www.blackspeakers.net describes him as "a nationally recognized 'face' of African American men who, according to the Centers for Disease Control, are the No. 1 reason that African-American women represent 68 percent of new HIV cases."
Public health advocates disagree with these kinds of assertions.
"The Chicago data do not bear out that the down-low factor is the leading cause of HIV infection," Munar says. Homophobic outrage at down-low men masks another serious problem, intravenous drug use. Mark Ishaug, executive director of the AIDS Foundation, says the down-low phenomenon is "clearly an issue, and it's clearly a problem, but it's not the only problem." The stress on it "makes it hard to deal with the substance abuse issue, and pushes people into the closet."
Seldom do discussions of men on the down low address the reasons so many black men choose to stay in the closet in the first place -- racism in the white gay community, homophobia in the black community, and societal pressures to have families. And time and money spent on looking at men on the down low represents resources not being spent on looking at the impact of drug abuse. It isn't surprising that black leaders are unwilling to deal with the drug issue, says Munar. "If people are skittish about talking about sex, they're really skittish talking about drugs."
Since the AIDS epidemic began, intravenous drug use has been the second leading cause of transmission, next to unprotected sex between men. But the issue has received a fraction of the attention paid to sexual transmission, ignoring the impact of drugs on HIV in communities of color. In Chicago between 1997 and 1999, more than 30 percent of the black men who were diagnosed with AIDS acknowledged that they were injecting drugs. According to the Illinois-based Coalition for Responsible Syringe Policy, people of color make up the majority of intravenous drug users with AIDS. And the Chicago Department of Public Health reports that from 1995 to 1997, African-Americans and Latinos accounted for 88 percent of AIDS cases among injection drug users. Furthermore, 54 percent of women who reported an AIDS diagnosis in Chicago between 1995 and 1997 admitted to injecting drugs, while a further 18 percent did not inject drugs but reported unprotected sex with an intravenous drug user as the likely source of infection.
Perhaps the greatest barrier to reaching young black men with messages of HIV prevention and education is the conditions in which many of them live. "The real culprit in all of this is poverty," says Oldham. A third of African-American males are in prison, on parole, or on probation. "You have a formula for sickness and death in the United States, and that's what's appalling."
For young black males, says Munar, "HIV is a problem, but not the leading problem. It's just on the list." Poverty and the many ills it brings, compounded by lack of access to information and health care, can ultimately lead young black men not to value their lives.
"People make decisions in their sex lives that are related to other parts of their lives," says Mark Ishaug. Prevention programs that work are ones that "are holistic and not about prevention per se," he says. Successful programs "talk about the whole person and their needs and talk about self-care, how to get and keep a job, and how to treat family. It's so complicated."
Many young men are drawn to older partners who may take advantage of their ignorance about sex and HIV. Marshall, the peer advocate, says he sees youth who are "focused on finding someone to take care of them without really looking at the cost."
Ultimately, the key component missing from HIV-prevention programs for black men is money. HIV prevention is "enormously under-resourced. Dollars are being stretched to the max," Munar says. "We can't squeeze more blood out of this stone."
At the same time, it is becoming increasingly difficult to get resources from the federal government and from private funders. "I think fatigue is a big issue," says Ishaug. "Donors are tired of giving to prevention because people are still getting HIV."
Health-care providers say they have ideas about what needs to be done to reach the populations hardest hit by HIV but who can't afford to implement them.
"This is a billion-dollar issue, and [in Chicago] we have three to four million dollars," Ishaug says. "Clearly, prevention takes a village, and clearly, the [current] providers are not a big enough village."
This article was produced under the 2003 George Washington Williams Fellowship for Journalists of Color, a project sponsored by the Independent Press Association.
Author's note: Nathaniel Marshall's partner of five years, James Simmons, passed away the morning after I interviewed him. Marshall has asked that this article be dedicated to him.
Karen Hawkins is a George Washington Williams fellow and a writer in Chicago whose work has appeared in Windy City Times and Curve.