California's code-based HIV reporting system is faulty and inaccurate and could cause the state to lose up to $50 million in federal funding as of 2007 if it is not revamped, experts said.
While most states track HIV cases by reporting the names of patients in a confidential database, California is among a handful of states that assigns each patient a coded number to better protect individuals' privacy. Healthcare officials say the data are often entered incorrectly, forcing experts to spend hours tracking down records and creating a massive backlog. And the Centers for Disease Control and Prevention won't accept the data, which means California could lose a sizable chunk of money in federal funding in the coming years.
George Lemp, director of the University of California's Universitywide AIDS Research Program, said duplication is a common problem in HIV reporting because people are often loathe to give their real names when they come in for treatment and because of common errors in entering the data. Those problems could be straightened out by cross-checking the information entered, said Lemp, who headed San Francisco's AIDS reporting system -- which does use names -- for nearly a decade.
But with the code, "You have no way to resolve it," he said. "The less information you have, the larger backlog of unknowns cases is going to be and the more resources you have to spend."
Still, some in the Legislature have been hesitant about making the switch and say California might be able to get a waiver.
Until now, federal funding has been allocated on the basis of the number of AIDS cases, but with new drugs, more people are living with HIV without progressing to AIDS, and the AIDS statistics are no longer as useful in allocating treatment money, Lemp said.
Under the reauthorization of the Ryan White CARE Act, which will go into effect in 2007, the federal government will begin handing out money to states based on the number of HIV cases. If California's HIV data aren't accepted by the CDC, state officials estimate they could lose up to $50 million for the state's $270 million AIDS medication program.
Michael Weinstein, president of the AIDS Healthcare Foundation, said holding out hope of a waiver is like "playing a game of chicken with the government," adding "it could lead to the loss of many lives."
