Los Angeles County officials want to use a controversial system for tracking HIV infection that identifies patients, abandoning a two-year-old program that kept names out of county hands but is suspected of undercounting AIDS cases.
The move, which the Board of Supervisors supported last week, follows a surprising jump in the number of reported AIDS cases.
County officials and HIV and AIDS service providers say that the current system is likely masking an even higher count.
"Simply put, the reporting system does not work, and as a result we have no idea about the number of cases," said Ged Kenslea, a spokesman for the AIDS Healthcare Foundation, the leading independent provider of AIDS- and HIV-related health services in the county.
In the past two years, the number of new AIDS cases reported in Los Angeles County has nearly doubled, to 2,532 in 2003 from 1,703 in 2002 and 1,337 in 2001, according to the Los Angeles County Department of Health Services.
That increase followed the county's implementation of a new system to track HIV in June 2002.
As of June 2004, there were 19,700 people reported living with AIDS in the county, and an estimated 35,000 living with HIV a number that is still being tallied by public health officials.
However, there is wide agreement that the system's reliance on a complicated method of protecting patients' anonymity has slowed verification of suspected new AIDS cases that could be costing millions.
Federal AIDS funding is distributed to states based on the number of confirmed AIDS cases. As of 2007, this formula will be based on HIV cases, reflecting the fact that drug therapy has been successful in preventing many patients infected with HIV from developing full-blown AIDS. "It's very likely affected funding," said Gordon Bunch, director of the county's HIV epidemiology program.
In preparation for the federal government's change in its funding formula, the state passed legislation requiring counties to begin tracking HIV cases. Until then, L.A. County tracked only AIDS which it has been doing since 1981 based on reports from doctors. Names were sent to the county but kept confidential.
Los Angeles County's method of tracking HIV patients uses a unique number that includes a patient's birth date, numerals that represent sex, and some letters in the last name.
The number is issued when medical providers and laboratories discover that a person is HIV positive. When new reports come in, county field officers check the numbers against the county's database. If they match, it's assumed the patient is an existing case.
If the numbers don't match, the field officers must visit the patient's provider to find out if the report represents a new case or if it was an existing one and there was a transposition or data input error.
To facilitate the process, doctors and other providers are supposed to maintain a log of the county numbers cross referenced to their patient files. But county officials say that less than a third of them do, lengthening the process as investigators begin searching individual files for the right match.
"The providers look at us blankly and say: 'I don't know these people.' That is a huge problem for us," Bunch said. "It has become very labor intensive and inefficient."
About 40 percent of the field cases turn out to be existing ones in which there was some kind of error in the identifying number, while others are new HIV and AIDS cases, he said.
The HIV tracking system has generated 26,000 case reports over the past two years, but because of the cumbersome field-checking process, there is a backlog of 11,000 cases that have yet to be investigated by the county's 12-person field unit.
It's unclear how many more HIV or AIDS cases will be turned up, but the AIDS Healthcare Foundation estimates the county may have lost more than $3 million in AIDS funding this year alone because of the backlog.
The problem has led groups like the Healthcare Foundation to call for a simpler names-based reporting system for individuals who test positive for HIV, unless patients explicitly have their initial test conducted anonymously.
The county AIDS commission rejected such a call a few years ago, but this year changed its stance and recommended to supervisors that a names-based reporting system was critical in light of the expected change in the federal funding formula. The commission reviewed past studies and concluded that names-based HIV testing does not dissuade patients from getting tested and that 36 other states that have similar systems have not had a problem maintaining patient confidentiality.
"I think there are several advantages, and it's a pretty secure system," said Nettie DeAugustine, who runs Long Beach's AIDS program and is co-chair of the county AIDS commission.
Last week, the Board of Supervisors passed a resolution asking the state to allow Los Angeles to alter its tracking system to a names-based one similar to systems used by other states.
County health officials, county commissions on public health and HIV services, along with many AIDS advocacy groups support the change. But some activists fear the names-based system could jeopardize the anonymity offered by the current system.
"We are really jumping the gun. I think we need to do everything we can to ensure patient confidentiality," said Demetri Moshoyannis, executive director of Being Alive: People with HIV/AIDS Action Coalition.
Being Alive questions the studies that say names-based reporting does not scare off patients and wants the county to simply work harder to get through its backlog.
Supervisors voted 4-1 in favor of a resolution calling on the state to adopt a names-based reporting system. (Supervisor Gloria Molina cast the dissenting vote).
Health officials agree that the jump in AIDS cases does not reflect an epidemic that has suddenly spun out of control. Many of the newly reported cases were diagnosed years ago, but remained in the files of medical practitioners who had not reported them.
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