In Chicago, more than half of HIV-infected men who have sex with men do not know they are infected, according to a report released last week by the Centers for Disease Control and Prevention. The study found that while the overall local infection rate aligns with the national average, 53 percent of people with HIV in Chicago are unaware of their status, compared with 44 percent nationally.
The news comes nearly 30 years into the battle against the epidemic, and 25 years after Windy City Times was founded—when there were still just a small number of people diagnosed with HIV or AIDS, but also a time when people would be diagnosed and sometimes die just a short time later.
This new report serves as another difficult reality faced by HIV/AIDS advocates and service providers as they struggle to slow infection rates. They already face hugely disparate rates of infection based on race and sexuality. The disease continues to affect the LGBT community disproportionately: men who have sex with men ( MSM ) suffer the highest infection rates of any population—more than half of all new HIV infections each year—with a cumulative nationwide total of more than 279,000 MSM dead since the beginning of the epidemic.
Infection rates have stark racial implications, too. In Chicago, a study released last year found that Black MSM were three times more likely to be infected with HIV than white MSM, and two-and-a-half times more likely than Latino MSM.
Over the last few weeks, in an attempt to get a sense of where efforts to slow infection stand, Windy City Times caught up with a number of Chicagoans whose work revolves around HIV/AIDS. Those activists talked at length about the struggles now inherent in their work: the fiscal setbacks, the faltering public attention paid to the disease, and the failure of prevention efforts to reach some affected communities.
In July, the Obama administration unveiled a long-sought National HIV/AIDS Strategy, which focuses national attention on three goals: reducing HIV incidence, increasing access to care, and reducing HIV-related health disparities. Jim Pickett, whose organization AIDS Foundation of Chicago was involved in drafting the strategy, said that he was "delighted" to see it.
"For once, we have clear direction that gay men and MSM need to be prioritized," he said. "The resources need to follow the epidemic."
Pickett said that while the goals of the strategy are laudable, it did not come with funding attached. "We cannot provide care in the absence of funding," he said.
Dr. Renslow Sherer, who co-founded Chicago's first HIV/AIDS clinic at Cook County Hospital in 1983 ( with Dr. Ron Sable, an openly gay physician who later ran for 44th Ward alderman ) , also emphasized the need for greater funding on a national level. "I think the U.S. is admired around the world for its aggressive response to HIV internationally," said Sherer, whose current work as a professor of medicine at the University of Chicago focuses on global health and HIV care and treatment. "That's one of the few great activities of the previous Bush administration. There's a lot of attention needed to continue the gains that have been made in our country. HIV is not over."
Olivia Sanchez, executive director of Project VIDA, said that over the past decade her organization has met with increasing struggles to find funding, and that the troubles have not necessarily been tied to the recent economic downturn. Project VIDA, which is located in Little Village, has done HIV prevention, education and direct service work since 1992.
In 1999, Sanchez said, Project VIDA employed a staff of 24; last year, it had a staff of 12; currently, nine people work for the organization. Sanchez said that she is still waiting for Project VIDA to be reimbursed for state grants that have already begun and ended. She has seen, she said, "not a penny."
Sanchez said that as the disease has become more treatable, it has lost the attention of the public at large. "We're not openly discussing it anymore," she said. "There isn't anything in the news in terms of HIV. It's still a crisis, it's still a pandemic."
Activists put forth a number of ideas as to why prevention efforts aren't being met with greater success. "Young adults that hear about it don't see it as a disease that can kill people," Sanchez said—and that contributes to unsafe sexual practices. Indeed, infection rates are rising among young MSM, who according to the recent CDC report are also more likely than other groups to be unaware of their status. In a survey released last year by the Chicago Department of Public Health, Black MSM under the age of 30 were found to have a 30 percent HIV prevalence rate, as opposed to four percent in white MSM.
"We're seeing complacency, particularly in lax prevention practices," said Sherer. "What one generation understood well is not being well-communicated to young people."
But, Sherer said, "The good side of complacency is widespread acceptance. Some of the stigma [ associated with being HIV-positive ] is reduced. But I think it's terrible when that translates to lax personal behavior."
"We've never done a good job [ sustaining prevention messages ] , whether it's HIV or other public health information," said Amy Maggio, a longtime HIV/AIDS activist whose work has included stints at the AIDS Foundation of Chicago and STOP AIDS/Chicago. "It frustrates me. I would hate like heck if in five years from now, we'd have to start it all over again."
Maggio said that speaking frankly about the realities of the disease—and the avenues of transmission—is vital. "As a prevention educator" during the height of the epidemic, Maggio said, "we did very provocative programs in the bathhouses," addressing the risks involved with sexual practices like fisting, for instance. "Even people who are positive, there can be secondary infections. You have to get out there and talk about it."
And that includes addressing the concerns of all communities. In 2007, epidemiologist Yaa Simpson founded the Association of Clinical Trial Services ( TACTS ) , whose goal, Simpson said, is "bringing the science to the people." TACTS aims to connect HIV-affected communities—particularly communities of color—with clinical trials and prevention efforts that could benefit their members. "My approach is to start working with those communities so they develop a structural approach to change from within," Simpson said.
Through education and outreach, TACTS works to combat misperceptions and suspicions that affected communities might have of the medical profession. Regarding people who deny the progression of HIV to AIDS, for instance, Simpson said, "There are people who believe that, and they are not going to not believe it because we don't talk about it.
"Everything isn't always 100 percent right or wrong," she said. "You don't dismiss it. You provide evidence to show them."
Jim Pickett said that he sees the slowdown in prevention efforts as the sign of an evolving public health response—and he calls the notion that young people are responsible for it "overblown."
"It's not just about young people," Pickett said. "It's the fact that we've had this thing since 1981. It's natural that we can't maintain a crisis mentality for 30 years. The whole crisis paradigm doesn't work."
He said that activists need to work at communicating a complicated message, one that is prevention-oriented but that does not stigmatize people who are positive. "'It's not as scary as it used to be, but you still don't want it,'" Pickett summarized. "It's tough."
