New treatments give HIV reporting added weight

U.S. at ‘defining moment’ in history of epidemic

While many public health officials privately disagree with the proposed federal HIV Prevention Act of 1997, the success of combination therapy has underscored the importance of early detection of HIV and helped spur efforts at both the state and federal levels to push for mandatory HIV name reporting. At the same time, however, AIDS experts say an open debate is needed to discuss the pros and cons of what until recently has been a deadlocked issue.

"The protease inhibitors should have by now precipitated at the national level a debate over the public health approach to HIV," says William Schaffner, MD, chief of preventive medicine at Vanderbilt Medical Center in Nashville, TN. "We are in some ways stuck in 1989. The AIDS activists and public health groups are still very reluctant serologic screeners, and yet now that we have therapy that is available and effective for early stage disease, we should be screening as many people as we can get our mitts on, and that notion is not in place, nor has it received much open discussion."

States would be required to report HIV names

So far, the debate has not centered on testing as much as reporting test results. The prevention act, also known as the Coburn bill, has pushed the HIV surveillance issue to the forefront by proposing that states begin reporting HIV cases by name and establish HIV partner notification programs. Moreover, it would allow physicians to withhold treatment from patients who refuse HIV testing. The bill has been endorsed by the American Medical Association and has more than 100 co-sponsors, yet public health officials privately voice concern that some of the bill’s coercive measures are counterproductive.

Although officials at the Centers for Disease Control and Prevention (CDC) do not comment on bills before they become law, their comments at the May meeting of the CDC’s Advisory Committee for HIV and STD Prevention suggests they have concerns about the bill.

"We think it is not a comprehensive [HIV] prevention bill," said Helene Gayle, MD, MPH, director of the Center for HIV, STD, and TB Prevention.

Public health agencies opposing the bill include the American Public Health Association and the National Association of County and City Health Officials. The National Alliance of State and Territorial AIDS Directors estimates that the bill would precipitate 265 statutory or regulatory changes for states to comply. Its sister group, the Association of State and Territorial Health Officials, estimates that the bill would cost states $420 million a year to implement.

Will name reporting compromise civil rights?

The issue of resources, as well as the possible confidentiality and civil rights breaches inherent in mandatory testing and reporting, has made public health officials reluctant to support the Coburn bill, says Lawrence Gostin, JD, professor of law at Georgetown University and a member of the Advisory Committee for HIV and STD Prevention.

"Clearly, access to antiretroviral therapy has dramatically changed the climate of testing," he says. "All people concerned with public health realize that the need for early testing is critical now that you have therapies that can prolong life, but there are still people in the community who feel that HIV reporting is a violation of privacy and will reduce testing."

To underscore the growing need for HIV surveillance and sharing of surveillance data not only among states but among different disease programs as well, the CDC held a two-day workshop in May with AIDS community leaders. Among several findings the CDC reported were preliminary results from a survey of states that have implemented HIV name reporting systems. The survey showed that concerns regarding their names being reported was not high on the list of reasons people gave for not seeking HIV testing.

Convincing AIDS activists that HIV name reporting won’t result in privacy breaches may be more difficult, but Gostin has noticed a ground swell of support from both public health officials and community groups. The movement for an HIV-based reporting system comes with the growing recognition that AIDS surveillance alone — conducting surveillance at the back end of the epidemic through counting morbidity and mortality — is inadequate.

"With the advent of these new treatments we are at a defining moment in the history of the AIDS epidemic," he says. "We really have to move to the front end of the epidemic and try to make a definite move toward HIV surveillance, rather than just AIDS surveillance."

Although half the states have HIV name reporting, those states account for only about one-quarter of the HIV-infected population in the United States. Most recently, Florida and New Mexico passed legislation to adopt HIV name reporting systems. The CDC meeting was a trial balloon to judge community acceptance of a full-fledged HIV surveillance system, says Julio Abreu, legislative representative for AIDS Action Council in Washington, DC.

"A lot of people there said this discussion is needed. They have these trepidations about confidentiality because this [information gathering] is going to be earlier in the onset of disease, people are going to live longer with this information on some kind of roll, and they want to know who will have access to it."

AIDS Action has not formed a position on the CDC’s move toward an HIV surveillance system, but Abreu says the organization believes the agency’s efforts are motivated for public health reasons. "We enter this conversation at a very different place then we do with Coburn because his proposal isn’t about prevention, whereas we view the CDC, with its partnership with the community, as seriously wanting to enhance its prevention measures," he says. AIDS Action says it is important for states that adopt HIV surveillance systems to continue to provide anonymous testing sites, he adds.

Integrating through shared surveillance

The availability of HIV reporting data will enhance the CDC’s existing AIDS surveillance system, which is also undergoing a change. "Integration" has become the new buzzword at the CDC, and one of the most logical and economical choices for integration is surveillance, say CDC officials.

The recent restructuring of the divisions of HIV/AIDS, STDs and tuberculosis into the combined Center for HIV, STD and TB Prevention is a by-product of this new philosophy. The next step is finding ways in which different programs among the three diseases can work closer together and find common ground among the overlapping populations they serve.

CDC officials recently told a joint meeting of its Advisory Committee for the Elimination of TB and its Advisory Committee for HIV and STD Prevention for TB and AIDS that the communication apartheid between the TB and AIDS surveillance systems has made it difficult to track the substantial population of patients who are infected with both diseases.

"We feel very strongly it is something we need to look at and see what is reasonable to further prevention activities and also lighten the burden on folks who do surveillance," said Gayle.

No wholesale changes

While emphasizing that the CDC is not interested in creating a new and costly surveillance system for the two diseases, it has been frustrated by lack of coordination and communication between the two systems at the state and local levels. New York City, for example, recently integrated its TB and STD surveillance systems but chose to leave HIV surveillance separate. At the same time, the CDC is expanding the traditional definition of surveillance from simply counting and analyzing data to contact investigations, outbreak control, and evaluation of prevention efforts, said Michael St. Louis, MD, medical officer in the CDC’s division of TB elimination.

The potential advantages of integrating the two surveillance systems include more efficient use of data entry and analysis staff, as well as better coordination of field investigations and outreach work in communities. Integrating TB and AIDS surveillance programs would make it easier for the two case registries to share information on patients who are co-infected without concerns about compromising confidentiality. In Florida, as many as 15% of the state’s 60,000 AIDS patients also are infected with TB. The co-infection rate may be even higher in New York City, health officials said.

While acknowledging that integration involves trade-offs, such as less control over patient confidentiality, St. Louis says an integrated approach would better assure that patients are being diagnosed and treated for HIV and/or TB. That is not to say changing the system isn’t difficult.

"When we formulate steps forward in the area of integration, we need to be very explicit about what we may be gaining or losing," he said.

Lack of explicit information and guidance is the main reason local TB programs have not followed CDC recommendations to offer HIV testing to all newly diagnosed TB patients, Schaffner says.

"The local programs don’t initiate that activity because the program which funds TB has not issued explicit instructions and directives about how to do that, and where the funding is supposed to come from, and how the information is supposed to be shared," he says. "I think most people who work in the field, and certainly in clinical medicine, believe it is long overdue that a TB and an HIV program share information."

The need for sharing information is becoming increasingly important now that HIV treatment is being initiated earlier in the course of infection, Schaffner notes. Nonetheless, the thought of TB programs handling AIDS surveillance information is disturbing for AIDS providers who are aware of the serious consequences of confidentiality breaches for HIV-positive patients.

In Denver, for example, patients diagnosed with TB receive a letter from the city health department stating that they are under supervision of the department, and could be incarcerated if they fail to adhere to treatment, said Bruce Davidson, MD, MPH, director of TB control for the Philadelphia Department of Public Health and president of the Atlanta-based National TB Controllers Association.

"I am not sure we want HIV and AIDS information in the hands of the same person who is doing that kind of program work, because society has made those decisions about the importance of TB control but it has not made the same kind of decision about enforcing HIV control," he told the joint committees.

One disadvantage to programs not sharing databases is the fact that TB surveillance ends one or two years after treatment for HIV-positive people with TB. Those patients, most of whom still will require follow-up for HIV treatment, can be lost to the system. The missed opportunities for intervention resulting from a TB program not knowing a patient’s HIV status — and vice versa — may supersede concerns about confidentiality, Davidson said.

St. Louis warned that health officials need to discuss the best ways to integrate before political forces decide for them. He alluded to the proposed HIV Prevention Act of 1997, which would make states report HIV as well as AIDS cases.