First-ever AIDS incidence decline marks start of a new era in epidemic

Downward trend could change level of services, funding

The number of new AIDS cases dropped last year for the first time in the epidemic a surveillance landmark that not only underscores the impact of treatment advances but the decreasing reliability of AIDS surveillance in the United States. As fewer HIV-positive Americans progress to AIDS and patients live longer, service providers and organizations are facing the inevitable move toward a system of mandatory HIV reporting, health officials say.

"We are approaching a turning point in the way we need to track this epidemic," said Helene Gayle, MD, MPH, director of the Centers for Disease Control and Prevention’s National Center for HIV, STD, and TB Prevention, at a recent press conference. "As our ability to treat HIV infection has advanced, reports of AIDS cases have become less indicative of recent trends in the epidemic. We must improve our ability to monitor HIV infection to effectively determine evolving patterns of epidemics so that we can appropriately target resources for prevention and treatment."

Gayle’s comment signals a more robust effort by the CDC to push states toward adopting mandatory HIV reporting legislation similar to that recently approved by New Mexico and Florida. Counting those two states, a total of 31 states now require reporting of HIV cases, either by name or unique identifiers. Three of those states Texas, Connecticut, and Oregon report only pediatric HIV cases. These states, however, account for less than one-third of the AIDS cases (and presumably HIV cases) in the country. Without more HIV data, the CDC cannot rely on HIV case reporting to monitor the epidemic, health officials note.

At the same time, AIDS surveillance data have lost their reliability and no longer represent the best basis for tracking the epidemic and determining where and how treatment and prevention dollars are spent. The cause of this turnabout is the success of new treatments. For more than a decade, when monotherapy was the standard of care, treatment played a small factor in confounding AIDS surveillance analysis. Now, as the new data dramatically show, combination therapy has altered the curve of both AIDS deaths and AIDS incidence. (See details on new AIDS data on p. 123.)

Thus, the new treatment phenomenon has become a double-edged sword, putting the CDC’s AIDS surveillance branch in epidemiological limbo.

"Because of the treatment effect, AIDS data are no longer the unbiased measure of the epidemic, which is what they have historically been," says Patricia Fleming, PhD, chief of HIV/AIDS reporting for the CDC. "The data are now telling us great news, but it also makes everyone have to rethink what we need data for and what we want it to tell us."

Currently, AIDS data show that the epidemic seems to be turning a corner fewer people are dying of AIDS, and the number of AIDS cases per year is dropping. Without the treatment effect, epidemiologists could depend on the AIDS data to provide a realistic reflection of what is happening with HIV cases. Now, however, new HIV infections theoretically could be increasing, but without comprehensive HIV reporting data, the CDC would have no way of monitoring the extent of the hypothetical increase or its demographic characteristics, Fleming notes.

The importance of HIV reporting data will grow as the incidence of HIV cases increases due to the treatment effect of fewer patients developing AIDS, Fleming says. "From 1995 to 1996 AIDS prevalence increased 11%, but don’t forget that as people live longer AIDS-free, HIV prevalence will go up," she notes. "The real punch line is that as deaths decline, we are going to have unless we can stop infections completely a growing population of people with HIV."

That scenario underscores the need for adequate prevention funding, as well as treatment dollars. But without comprehensive HIV data, the CDC will have difficulty knowing where the epidemic is moving and whether the rate of new HIV cases estimated at 40,000 to 80,000 a year is slowing. It also will be difficult to evaluate the true impact of prevention efforts, she adds.

Even if all states required HIV reporting, many cases of HIV will continue to go unreported because people at risk are not seeking testing. Using the most conservative estimates, the CDC projected that states with HIV reporting were picking up only about 25% of infections during the previous year to year and a half, Fleming notes.

At the same time, however, the CDC presented epidemiological projections at the September Interscience Conference on Antimicrobial Agents and Chemotherapy in Toronto, estimating that if all states had had HIV reporting, approximately two-thirds of all HIV infections in the country, or more than 500,000 infections, would have been reported by now.

In the past few months, several developments have spurred discussion about HIV reporting and have led to re-evaluation among many groups that formerly opposed it. The CDC has fostered this change through meetings with various organizations to discuss the implications of new AIDS data. In May, the agency held a symposium in Atlanta on HIV reporting, in part to help states prepare for the advent of mandatory HIV reporting, which is part of the proposed 1997 AIDS Prevention Act introduced by U.S. Rep. Tom Coburn (R-OK). Indeed, while many state public health officials oppose the Coburn bill and dislike federal meddling with state public health laws, many have not come up with alternative options, CDC officials note.

As momentum builds to treat AIDS like other infectious diseases, old attitudes are being confronted with new realities about the epidemic, says Fleming. "People are stuck in different stages of evolution of thinking and the data are coming out very quickly now," she tells AIDS Alert. "Public health departments are having to decide what it means and what they need to do."

After studying the issue for several years, the executive committee of the Association of State and Territorial Health Officials (ASTHO) voted last month to support named HIV reporting. The proposal was expected to win support of the organization’s full membership when it held its annual meeting in late September, says Helen Fox Fields, HIV/AIDS project director for ASTHO.

"What has changed this year and brought the issue to the forefront is the fact that the CDC itself is leaning toward encouraging all states to do HIV reporting," he says. "We are aware of the concerns that HIV-positive people are subjected to different kinds of stigmas and discrimination than those with other diseases, but AIDS cases are also reported by names in all states, and we have a good track record of protecting confidentiality; we think we can do the same with HIV."

The Council of State and Territorial Epidemiologists (CSTE) has supported HIV name reporting for several years, but strengthened its position after the CDC’s May symposium. Both ASTHO and CSTE, however, also recommend that states continue to offer anonymous testing sites.

^{Fear of being named}

Aside from fears of confidentiality breaches, a main criticism of HIV name reporting has been the assumption that it will drive people away from getting tested, Fleming says. To determine the validity of that concern, the CDC and the University of Southern California have conducted one of the largest HIV-testing surveys of high-risk populations. In each of nine states, 100 injection drug users on the streets, 100 men in gay bars, and 100 heterosexuals in STD clinics were interviewed about the reason they did or did not seek HIV testing. Among both those who were tested and those who were not, approximately 20% mentioned their names being reported as one of the reasons for not getting tested, according to preliminary data. In follow-up interviews, however, the study participants were asked which was the single main reason they avoided testing and only 2% mentioned name reporting, Fleming says.

"The biggest reasons people didn’t get tested were because they didn’t think they were at risk or didn’t want to find out they were infected," she adds.

The findings have alleviated concerns that name reporting will drive testing underground, but also point to the importance of having anonymous testing available for the small proportion of people who fear their names will be used inappropriately, she adds.

In a recent editorial on the issue published in the September issue of Insight, Rep. Coburn stated that when North Carolina closed its anonymous testing sites, testing for HIV dramatically increased. Fleming also notes a comment from a Colorado health official who observed that the use of anonymous testing sites had dropped in that state to the point that some sites are no longer open full-time. Now that people realize they can increase survival with early treatment, they appear to be more willing to forgo anonymous testing, she says, adding that home HIV test kits are also on the market now.

Another factor driving the increased support for HIV reporting is the growing recognition that as attention turns more toward prevention, funding may eventually be tied to HIV cases and not just AIDS cases, says Fox Fields.

"There have been no proposals yet, but it certainly has come up in discussions and no one is prepared to deal with that yet," she says. "I don’t think the change will be overnight, but I think within the next few years, with increased use of protease inhibitors, we might see some shifts in funding."

Those shifts may also be made geographically as HIV data show new infections are heating up in certain regions. Before AIDS case data became less reliable, the CDC noted that the epidemic was cooling off in epicenters of the Northeast and West where it first took hold but not in the South. Indeed, the AIDS incidence decreased only 1% in the South in 1996, compared to 12% in the West and 8% in the Northeast.

Public health officials in Georgia have the infrastructure set up to do name HIV reporting, but have not yet implemented it.

"We have to start doing it in Georgia, if just from a money standpoint," says Anthony Braswell, MPH, MBA, executive director of AID Atlanta, the largest AIDS organization in the Southeast. "Our numbers pale in comparison to other states that are doing it."