Mandatory HIV surveillance system could be implemented in the next year
Mandatory HIV surveillance system could be implemented in the next year
Unified CDC plans two publications supporting name reporting
As the Centers for Disease Control and Prevention officially makes its case for implementing a national HIV surveillance system, and more states support its position, mandatory HIV reporting could begin as early as this summer, CDC officials say. The division over whether such a system should use names or unique identifiers, however, is a major sticking point that may delay implementation, public health officials note.
Either way, the transition from an increasingly inadequate AIDS surveillance system to the long-contentious alternative of HIV reporting won’t come easy.
"This is the single most time-consuming and difficult issue we have been dealing with," says Kevin DeCock, MD, the new director of the CDC’s division of HIV/AIDS prevention, surveillance, and epidemiology. "I personally view this as more significant than all the discussion and activities surrounding the change in the AIDS case definition in 1993."
The CDC’s efforts to study the pros and cons of HIV name reporting and to educate the public about the epidemiological perils of continuing to rely solely on AIDS reporting will soon become public. In the next month or two, the agency plans to publish in the Morbidity and Mortality Weekly Report the results of its evaluation of alternatives to HIV name reporting piloted in two states. This spring it also plans to publish a type of "best practices" document in the Federal Register that would spell out the standards for conducting HIV name reporting.
At the December meeting of the CDC Advisory Committee on HIV and STD Prevention, DeCock told AIDS Alert he hoped a nationwide HIV surveillance system could be in place by this summer at the earliest and no later than the beginning of 1999. At the same time, however, he added that the CDC still welcomes input on the issue before making its position official.
Public health officials feel a sense of urgency to take a position not only because of the accelerating trends in the epidemic, but also because of the vacuum created by the absence of a strong policy statement from the CDC. "States don’t like it, and it also gives people who have other ideas a chance to promote their agendas," DeCock adds.
In just a short period there has been a fundamental change in the public’s perception of HIV name reporting, driven primarily by the remarkable consequences of the current new paradigm in HIV treatment. Improved treatment regimens have resulted in the first-ever decline in AIDS deaths and incidence throughout the country. Overall, AIDS deaths declined an average of 23% for the nation in 1996, but figures varied greatly, particularly in areas hardest hit by the epidemic, says DeCock, adding that in Los Angeles the decline was 50%.
As a result, AIDS surveillance has rapidly become an unreliable marker for identifying the frontier of new HIV infections. Not since the early years of the epidemic has AIDS surveillance been so weak, he cautions.
"These remarkable changes in the trends in AIDS have resulted in a situation where we have lost the ability to monitor the epidemic in this country in any way that is reliable for public health planning, and this has happened in a very short time," he told the committee.
Anticipating the need to expand HIV reporting, the CDC has been as busy and visible as a political candidate in an election year as it tries to change the positions of the 20 states that have resisted the addition of HIV reporting. In the past year, the CDC has held a half-dozen seminars and meetings aimed at educating public health and community leaders on the necessity of HIV reporting. The agency’s efforts have succeeded in moving the debate beyond the need for HIV reporting to the question of which HIV reporting system will best suit the nation.
Committee members, who represent diverse AIDS communities, acknowledged repeatedly how surprised they were by how many of their colleagues and constituents supported the need for HIV reporting. Many, indeed, backed state efforts to move toward a system of name reporting, which has raised concerns primarily among civil rights groups.
"Six state AIDS directors and the Washington State Medical Association have concluded that names reporting is the way to go," said Robert Wood, MD, medical director for the Seattle-King County Department of Public Health’s AIDS Project.
Two other advisory committee members, both of them Hispanic, expressed concern that HIV name reporting would lead to deportation, particularly for Latinos. "There is no question in my mind that name-based surveillance will be used against immigrants in this country," says Norma Lopez, vice president of development for the National Council of La Raza in Washington, DC. Last year’s widespread changes in federal immigration and welfare laws have increased the chances that illegal immigrants with AIDS face the possibility of deportation, according to a recent New York Times article.
Doug Morgan, MD, assistant commissioner for the New Jersey Department of Health’s division of HIV prevention and control, reported that health officials from Massachusetts and New York have recently inquired about New Jersey’s foray into HIV name reporting seven years ago. New Jersey is the only high-incidence state to adopt HIV name reporting. While there are 30 HIV name reporting states, they account for only one-third of the nation’s AIDS cases.
Several high-profile AIDS organizations, however, have opposed name reporting, including the largest AIDS lobby, AIDS Action Council. In December, the American Civil Liberties Union released a report that supports an alternative to name reporting piloted by Maryland. One of only two in the country, the system assigns a random alphanumeric code, or unique identifier, to those who test positive, thereby assuring anonymity.
"This report shows that name reporting is not our only alternative," says Michael Adams, JD, staff attorney with the ACLU’s AIDS Project. "In light of Maryland’s successful experiment with unique identifiers, the CDC should heed the concern of AIDS advocates and stop promoting name reporting over unique identifiers."
An extensive analysis of the unique identifier systems in Maryland and Texas, however, suggests that this alternative is too unreliable and unwieldy an option, DeCock said:
"It is an incomplete and cumbersome system that is very dependent on providers formulating unique identifiers, and we don’t think this is feasible in some of the more heavily infected parts of the country."
The biggest drawbacks of the unique-identifier system are that duplicate reporting cannot be eliminated, and the system cannot be linked to other public health database systems, such as tuberculosis registries, he explained. The rates of incomplete reporting in Maryland and Texas have varied from 26% to 52%, he added.
In contrast to the highly accurate AIDS surveillance system, an HIV surveillance system depending on unique identifiers would produce less confidence in its numbers, resulting in the kind of "arguments around numbers" that has plagued the World Health Organization’s recent AIDS case update, which suddenly increased worldwide estimates by 33%, he explained. Accuracy of HIV reporting data also must be assured if Ryan White funding becomes tied to HIV rather than AIDS cases a change most public health officials see as inevitable once a national HIV reporting system is put in place.
Among other findings from the CDC analysis is the high costs of a unique identifier system and, paradoxically, the possible increased risk of confidentiality breaches. As an example, DeCock mentioned that Maryland providers were supposed to keep records of unique identifiers that could be matched to patient charts. This practice raises the possibility of multiple HIV registries kept in different parts of the state, he said.
Beefing up records security
As for concerns that HIV name reporting will result in confidentiality breaches and drive testing underground, DeCock cited an unpublished CDC study that will be part of the MMWR report. The nine-state survey of 2,500 high-risk people found that more than two-thirds did not know whether their state conducted HIV reporting. Only 2% said fear of their name being reported was the major reason for not seeking an HIV test, he noted.
"It is difficult to argue that named HIV reporting influenced their behavior when they were not clear about the particular [reporting] system they had," DeCock argued.
Nonetheless, the CDC is sensitive to fears of confidentiality breaches, particularly after the highly publicized Florida case in which a public health official passed around an AIDS case registry, says John Ward, MD, the CDC’s chief of AIDS surveillance. The CDC is improving the security of computerized AIDS and HIV data collection systems. It also may set standards for how those programs should be run, such as restricting the number of name-based registries, encrypting programs so that access is limited, and auditing programs to assure security guidelines are followed. Although existing state laws may pose legal barriers, the CDC also is interested in exploring how lists of names could be destroyed once they are no longer needed for surveillance purposes.
Overall, state laws for medical records confidentiality are good, says Lawrence Gostin, JD, professor of law at Georgetown University, who published an overview of those laws last year. However, the CDC may publish recommendations that set forth uniform elements it expects from states, such as protection from subpoenas, limiting list access to law enforcement officials, and adequate penalties for violating the law, Ward notes.
Gostin, who recently outlined the public health benefits of HIV name reporting in the New England Journal of Medicine, agreed with DeCock that the change in emphasis from AIDS to HIV reporting marks an important milestone in the epidemic one that has been reached through careful study and widespread input.
"I think we are going to look back at this moment three or four years from now and see it as a moment in history and see it as an example of the good part of AIDS exceptionalism, because in no other place in health do you have this kind of community public health dialogue," Gostin added.
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