AIDSWEEKLY Plus; Monday, May 18, 1998
Daniel J. DeNoon, Senior Editor

In a carefully worded editorial, the U.S. Centers for Disease Control and Prevention (CDC) has advised all states not currently requiring name-based, laboratory reporting of positive HIV tests to implement "integrated HIV and AIDS surveillance."

States identified by the CDC as already having "integrated" surveillance programs are those now requiring name-based surveillance.

An analysis of data from these 25 states appeared in the April 24 issue of the CDC's Morbidity and Mortality Weekly Report ("Diagnosis and reporting of HIV and AIDS in States with Integrated HIV and AIDS Surveillance - United States, January 1994-June 1997," MMWR, 1998;47(15):309-14.)

"Name-based HIV reporting should facilitate epidemiologic follow- up to increase the completeness of risk/exposure, clinical, treatment, and other data relevant to effective HIV-prevention community planning," the CDC advised in an editorial accompanying the article.

"This report highlights the continued need for effective HIV and AIDS prevention programs ... and demonstrates the usefulness of integrated HIV and AIDS surveillance data to direct these efforts. State and local areas without such surveillance have limited ability to monitor local changes in HIV infection and disease trends. ... Implementing integrated HIV and AIDS surveillance in these states and local areas is necessary to provide accurate information for targeting resources to populations most affected ... and for evaluating program effectiveness."

The recommendations come on the heels of hints that the CDC was on the verge of recommending universal name-based reporting of HIV positives.

"It is the CDC's technical opinion that name-based surveillance ... is the system most likely to provide data necessary for tracking the epidemic," said Kevin M. De Cock, director of the CDC Division of HIV/AIDS Prevention, Surveillance, and Epidemiology in a February 1998 address to the Retrovirus conference (AIDS Weekly Plus, February 12, 1996).

There have been calls for nationwide name-based reporting since the beginning of the U.S. AIDS epidemic. Only a few state and local jurisdictions have implemented the policy. The CDC's previous opinion has been that AIDS mortality data was sufficient for tracking the epidemic. There was also the feeling that since little could be done for infected individuals, the risk of discrimination due to inadvertent breaches of confidentiality outweighed any potential benefit of tracking those who tested positive for the AIDS virus.

All this has changed.

The advent of highly active antiretroviral therapy (HAART) has significantly improved the prognosis for all but the most severely ill people with HIV disease. And the main point of De Cock's presentation to the Retrovirus Conference was that a huge drop in AIDS mortality - 44 percent fewer deaths in 1997 than in 1996 - can be traced to the new treatments.

"I think we are at a very special moment in the epidemic of HIV/AIDS, especially in the industrialized world," he said. "We've seen such remarkable drops in death due to AIDS not because of preventive success but due to improved therapy."

Because of this enormous change in the natural history of AIDS, mortality no longer provides an accurate picture of the extent of the epidemic.

"The slowing of progression to AIDS means more HIV infected people available to spread disease," De Cock warned. "The slowing of AIDS makes tracking the epidemic harder. ... Our ability to monitor the epidemic is very weak compared to a few years ago."

Accordingly, the CDC researcher called for tracking of new HIV infections as well as new AIDS cases and AIDS deaths.

AIDS activists are enormously suspicious of name-based reporting. They fear that there can be no guarantees of patient confidentiality and that those who test positive would be exposed to discrimination. Moreover, they suggest that alternatives to name-based reporting - such as the use of unique but anonymous identifiers - would permit the kind of integrated HIV/AIDS surveillance that the CDC recommends.

Proponents of name-based reporting argue that only the use of names can prevent duplication of reports and consequent skewing of data.

Providing justification for the CDC's changed attitude is data from the 25 states that employed name-based reporting since January 1994. This data, reported in the MMWR article, confirm that AIDS data is insufficient to track the U.S. epidemic. They also provide hard data confirming that even as AIDS cases dwindle, HIV infection rates remain stable.

The 25 states using name-based reporting are Alabama, Arizona, Arkansas, Colorado, Idaho, Indiana, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Nevada, New Jersey, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Tennessee, Utah, Virginia, West Virginia, Wisconsin, and Wyoming.

In these states, from January 1994 through June 1997 there were 72,905 diagnoses of HIV or AIDS among people aged 13 years or older. HIV was the initial diagnosis in 72 percent, and AIDS was the initial diagnosis in 28 percent.

For those with an initial diagnosis of HIV infection, 57 percent were non-Hispanic blacks and 28 percent were women. People age 13-24 years accounted for 14 percent, and the number of HIV diagnoses in this age group remained relatively constant from year to year.

"The number of new HIV diagnoses among persons aged 13-24 years probably more closely indicate HIV incidence trends because young persons have more recently initiated high-risk behaviors," the CDC editorial suggested.

From 1995 to 1996, HIV incidence declined 3 percent among men but increased 3 percent among woman. There was a 10 percent increase among Hispanics but a 3 percent decrease among non-Hispanic blacks.

"The HIV case data from these states reflect the changing demographic and risk profile of an epidemic that disproportionately affects racial/ethnic minorities," the CDC editorial stated. "Race/ethnicity is not a risk factor for HIV infection but is likely a marker for other factors that may be predictive of increased risk for HIV infection (e.g., low income, lack of education, and higher rates of injecting and non-injecting drug use)."

The editorial recommends that HIV prevention efforts should focus on reducing high-risk sex and drug-using behaviors among blacks and Hispanics. It also advises that a major effort be made to reduce high-risk sexual behaviors in the 13-24 year age group, particularly among women and among men who have sex with men.

Linkage of HIV and AIDS data showed that some 25 percent of new HIV diagnoses were seen in people who already had progressed to AIDS.

"AIDS surveillance data should be used to target underserved populations for early testing and prompt referrals for treatment," the CDC suggested.

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