When New York state required health care providers and testing labs to report the names of people who receive an HIV positive diagnosis, one of the arguments among those who backed the 1998 law was that the data would give a more accurate picture of the AIDS epidemic.
But the names reporting effort is not gathering information on whether new infections are occurring among gay and bisexual men, drug users, or other at-risk groups so city health officials cannot yet say where the AIDS epidemic is heading.
“With the change in the law about 77 percent of our cases come to us via labs and when they come to us via labs many of those reports do not include some of the information like risk (category),” said Dr. Judith Sackoff, deputy director of the HIV surveillance and epidemiology program at the city health department.
The department’s “HIV/AIDS Surveillance Program Semi-Annual Report” included data on new HIV infections from June of 2000 through December 2001.
There were 6,084 new HIV infections reported in New York City during that time with 3,673 among men and 2,411 among women. There were 3,195 new infections among African Americans and 1,890 among Latinos. Whites, Asian Americans, Native Americans, and people of unknown ethnicity accounted for the remaining 999 cases. More than half of the new infections–– 3,291––occurred among adults between 30 and 44.
The report has no data about whether these new infections happened among gay and bisexual men or injecting drug users.
“We didn’t put the risk information in because in a high proportion of the cases the information is incomplete,” said Dr. Denis Nash, director of surveillance at the department. “We do have risk information, but because such a large proportion is incomplete we are not sure what it means.”
Part of the problem stems from the volume of information the department now receives. Labs and health providers must report people who test positive for HIV, viral load test results, or the amount of detectable virus in an infected person’s blood, and test results for levels of a blood cell, called a CD4 cell, when that level falls below a certain number.
In 2000, when the names reporting scheme was implemented, the department received just under 60,000 reports on such tests. It got over 300,000 reports in 2001.
“It does add a significant amount of information to what we do,” Nash said. “The increased number of lab reports resulting from the new law increased the number of cases we have to investigate. With that increased volume came the challenge of trying to collect transmission risk information.”
The reports are supposed to include the person’s name, date of birth, race, and gender but that information is not always included. More detailed reports on new HIV infections, that include transmission categories, from other providers, such as doctors, can also be incomplete.
“I don’t think it’s failed to give more complete information on the epidemic,” Nash said. “We are able to describe the demographics and geography. The straggling piece on the characterization of the epidemic is the transmission risk.”
The department will use a statistical sampling approach to “infer the risk distribution,” according to the report. It will investigate 5,700 AIDS and HIV cases reported between June of 2000 and December 2001 to determine how those people were infected. A similar investigation will be done on 200 to 300 newly reported HIV and AIDS cases each month starting in January 2002.
“The information on transmission risk has not been complete,” Sackoff said. “That is why we have moved into sampling… We think it’s the most important thing we are doing right now.”
When the department has completed its sampling effort that data will likely be six to 12 months old, according to Nash.
Nettie Mayersohn, the state assemblymember who championed names reporting, said that gathering risk group data was not part of the original legislation.
“I don’t recall the original bill insisting on getting information on how people were getting infected,” she said. “That has nothing to do with the purpose of the legislation which is to try to get to people who are getting exposed… I don’t know that it is relevant in terms of what we were trying to accomplish which is cutting the number of people who are being infected.”
The state health department, which wrote the regulations governing names reporting, did not respond to calls seeking comment.
Activists who opposed names reporting had mixed reactions.
“The overriding rationale for HIV surveillance, in general, and names reporting, in particular… was that it would enable us to have a better sense of where the epidemic is heading,” said Ronald Johnson, associate executive director at the Gay Men’s Health Crisis, or GMHC. “Looking at the data that has been released it’s not telling us the kinds of things that we need… and certainly it’s not meeting the intent of the law.”
Dr. Jeffrey M. Birnbaum, program director at the Health and Education Alternatives for Teens at Kings County Hospital, had some sympathy for the health department.
“They’ve probably become overwhelmed with the case reports,” he said. “When you look at the disproportionately small amount of money that the state puts into their surveillance system it’s no surprise that they haven’t been able to fully analyze the data with respect to transmission categories.”