HIV Apathy

On a rainy day last June, local officials in Washington, D.C., gathered under tents erected on a public plaza to be tested for HIV....
January 31, 2007

On a rainy day last June, local officials in Washington, D.C., gathered under tents erected on a public plaza to be tested for HIV. The District of Columbia's health department was kicking off a sweeping new effort to encourage city residents to take action against the disease. With banners, music and mobile-testing units, officials hoped the launch event and the campaign would help raise local awareness about HIV -- and help the city address its most pressing health concern.

Washington has the nation's highest rate of new AIDS cases, and the city's goal -- HIV testing for every resident between the ages of 14 and 84, totaling over 400,000 people -- was unprecedented in its scope. City officials said the campaign, which also included distributing an initial 80,000 HIV tests to doctors' offices, hospitals and health clinics, would enable them to get a better idea of how many residents are infected with HIV. And making such screenings routine, they hoped, would help erase the stigma against getting tested for the disease.

Six months later, though, the effort was faltering. Fewer than 20,000 people had been tested. Many of the HIV test kits expired before they were distributed, forcing the city to throw them away. Others were donated to the Maryland health department to use before they went bad. And the city still lacked a comprehensive plan for ensuring effective treatment for those residents who test positive for the disease.

It's not all bad news. The District nearly tripled the number of sites offering free HIV screenings, and the Department of Corrections began screening all inmates for HIV. And the city improved its disease-surveillance technique, recording information on behaviors and lifestyles, in addition to counting the number of new HIV cases.

But D.C.'s struggle to meet its goals underscores a challenge common to local health officials across the country. More than a million U.S. residents are infected with HIV, and one-quarter of them don't know it, experts estimate. Diagnosis rates of HIV have stabilized in recent years, but large cities continue to grapple with much higher rates. They're dealing with higher incidents of the risky behaviors -- drug use and unprotected sex, particularly gay sex -- that tend to spread the disease. But they're also trying to battle something less tangible: complacency. Antiretroviral drugs have largely changed HIV from a terminal illness into a chronic one. And the fears associated with AIDS have faded over the past 20 years. As health officials work to combat HIV, they're finding that their hardest fight is the one against apathy.


The first test for the human immunodeficiency virus was licensed by the FDA in March 1985. It was quickly put into use by blood banks, health departments and clinics across the country. But HIV testing at that time faced some major obstacles, which would continue to thwart HIV policies for much of the following two decades. For one, it usually took two weeks to obtain lab results, requiring multiple visits for patients waiting to see if they had HIV. Many patients -- in some places, as many as half -- never returned for the second visit. Another barrier was that, at the time, a diagnosis of the disease was a death sentence. With no reliable drugs to slow the progression of HIV into AIDS, and with an attendant stigma that could decimate a person's life, many people just didn't want to know if they were HIV-positive. "The impact of disclosure of someone's HIV-positive status could cost them their job, their apartment and their social circle," says Dr. Adam Karpati, assistant commissioner for HIV/AIDS Prevention & Control for the New York City health department. "In a basic calculus, the value to the patient was questionable. Knowing their status could only maybe help them, but it could definitely hurt them."

Because of that stigma and the seriousness of a positive diagnosis, many cities and states developed rigorous measures to ensure that testing was voluntary and confidential, and that it included a full discussion of the risks associated with the disease. That meant requiring written consent in order to perform tests, and mandatory pre- and post-test counseling. "A lot of the laws were, appropriately, concerned with confidentiality and protecting people's rights," Karpati says.

Two major developments have since changed the method -- and the purpose -- of HIV testing. First, the development of antiretroviral drugs in the mid-1990s has lessened the impact of HIV as a fatal disease. And in the past two or three years, advancements in testing technology have effectively eliminated the wait time for receiving results. Rapid tests using a finger-prick or an oral swab can be completed in 20 minutes, meaning nearly everyone can receive results within a single visit.

Those changes, along with aggressive counseling and education about risk-prevention measures, helped stabilize the rate of HIV diagnosis. After peaking in 1992, rates of AIDS cases leveled off by 1998. Today, about 40,000 AIDS cases are diagnosed every year. Data on non-AIDS HIV infection rates are much harder to come by, but they seem to have stabilized as well.

The problem, however, remains especially acute in urban areas. While health experts take pains to stress that HIV/AIDS is no longer just a "big city" problem, the fact is that 85 percent of the nation's HIV infections have been in metropolitan areas with more than half a million people. "Urban areas have always been the most heavily impacted by the HIV epidemic, and they continue to be," says Jennifer Ruth of the Centers for Disease Control and Prevention. Intravenous drug use, risky sexual behavior and homosexual sex all contribute to higher HIV rates, and they are all more prevalent in urban areas. But cities face other complicating factors as well, including high poverty rates and residents with a lack of access to medical care, which exacerbate the challenges of HIV care.


Nowhere is that more evident than in Washington, D.C., where an estimated one in every 20 residents is HIV-positive. That's 10 times the national average. But that figure is only a rough guess. The truth is that health officials don't even know what the city's HIV rate is. Last year's campaign was supposed to change that. By setting a goal to test nearly all city residents, District health officials hoped to make HIV screening a routine part of medical care. In the process, the health department hoped it could finally get a handle on just how bad the crisis was. "We've had problems in the past, I'll be the first to say," says D.C. health department director Dr. Gregg A. Pane. "But we have galvanized interest and action, and we've highlighted the problem in a way it hasn't been before."

The effort stumbled, though. The Appleseed Center for Law and Justice, a local public advocacy group, has issued periodic report cards grading the District's progress on HIV. The most recent assessment, published six months into last year's testing push, found mismanagement and a lack of coordination with the medical community. The District was testing substantially more people than it had been, but the number was still falling far short of officials' goal. "D.C. took a great step forward, but it takes more than just a report announcing it," says Walter Smith, executive director for the Appleseed Center. "You have to make sure there's a plan."

What D.C. did achieve, however, was a fundamental shift in the way health officials perceive the HIV epidemic. "This is a disease that affects everyone," says Pane. "It's our No. 1 public health threat, and treating it like a public health threat is the exact right thing to do."

That paradigm change has been happening in health departments across the country. Last year, the CDC made waves when it announced new recommendations for treating HIV as an issue of public health. That means testing as many people as possible, making HIV testing a routine part of medical care, and removing the barriers to getting tested. Washington was the first city to adopt the CDC's recommendations for comprehensive testing, but other cities have also moved to make testing more routine. San Francisco health officials dropped their written-consent and mandatory-counseling requirements for those about to be tested. New York City has been moving in a similar direction, although removing the written-consent rule there will require changing state law. Many health officials think that since testing has become so easy and social attitudes about the disease have shifted, the strict testing regulations adopted in the 1980s are now cumbersome. The protections have become barriers.

Officials also are moving away from "risk-assessment testing," in which doctors first try to identify whether a patient falls into a predetermined high-risk category. "What has evolved is that, with an epidemic, risk-based testing is not sufficient," says New York City's Karpati. "Now there's a general move toward comprehensive testing." Privacy advocates and many AIDS activists oppose the shift away from individual protections. Yes, the stigma isn't what it used to be, they say, but it still exists. HIV isn't like tuberculosis or the measles, so they believe health officials shouldn't treat it like it is.

But even if officials could strike the perfect balance between public health and private protection, there's another factor that everyone agrees is thwarting cities' efforts to combat HIV. Call it burnout or complacency or "prevention fatigue." In an age when testing consists of an oral swab and a 20-minute wait, and an HIV-positive diagnosis means taking a few pills a day, health officials are battling a growing sense of apathy toward the disease. "The very successes we've made in the past 20 years have hurt us, in a sense," Karpati says. "We don't have hospital wards full of HIV patients. We don't have people dying as much. There's a whole new generation of folks growing up who don't remember the fear of the crisis in the 1980s."

That casual attitude toward the disease can lead to riskier behavior and, in turn, more infections. With HIV and AIDS disproportionately affecting low-income residents, any increase in infections places an additional burden on governments. And while prescription drugs have made the disease more manageable, the fact is that 40 percent of the new HIV diagnoses in the nation are still made within a year of the infection's progressing to AIDS -- which is usually too late for medicine to do much good. As cities try to fight HIV complacency through refined testing policies and a focus on comprehensive testing, residents will have increasingly widespread access to tests for the disease. But for health officials, the greatest challenge will be getting the right people to care.