HIV Tracking System May Be Scrapped

It was heralded as a way for California to closely track the spread of HIV without compromising patient privacy or civil rights. Rather than reporting infected patients by name, public health agencies would identify them by codes.

Despite its lofty intentions, however, California’s 3-year-old reporting system for the human immunodeficiency virus has become a bureaucratic morass.

Laboratories are reporting incomplete or erroneous codes to health departments. Doctors’ offices aren’t keeping required logs of their HIV-positive patients. Public health officials say their backlog of cases numbers in the thousands as they spend hours chasing bad information.

Countless cases are believed to be lost in the system. As a result, health authorities throughout the state say they cannot effectively monitor the epidemic or direct scarce dollars where they are most needed.

“We’ve done our best to make this system succeed,” said Gordon Bunch, director of the HIV epidemiology program at the Los Angeles County Department of Health Services. “Despite our best effort, it has failed.”

Even some original supporters of the code system, which was implemented in July 2002, say it is inevitable that the state will have to scrap it and start over.

The U.S. Centers for Disease Control and Prevention does not consider codes accurate enough, and federal officials are poised to withhold funding from states that rely on them.

California ultimately stands to lose up to $50 million annually in federal money designated to treat HIV patients and prevent the spread of the virus, a state task force estimated last year.

Michael Montgomery, chief of the state Office of AIDS, strongly backed the code system at first, but since has come to believe that a names-reporting system would work better.

“It’s just a question of when we do it,” Montgomery said about the switch.

California took an unusual -- and more expensive -- approach in choosing to track HIV differently from other diseases. Every other reportable disease is tracked by name in a confidential database. That includes full-blown AIDS cases, which are caused by HIV and can develop 10 or more years after HIV infection.

Because AIDS cases often take so long to progress, they are not necessarily a good indicator of current HIV infection patterns.

Just seven states and the District of Columbia track HIV strictly by alphanumeric codes. California is the only state among the five largest that uses an HIV reporting system that differs from the way it tracks AIDS, acquired immune deficiency syndrome.

Under the current reporting system, laboratories and doctors that test patients report HIV-positive cases to county health departments using codes that include birthdates, gender and elements of a person’s last name. The counties, in turn, report their coded data to the state, which passes the information to the federal government.

The decision to track HIV this way came after several years of contentious debate. The California Legislature sided with those who raised concerns about possible breaches of patient privacy and resulting discrimination.

Code supporters argued that the very prospect of a leak would keep many people from being tested for HIV.

That mistrust persists among patients today, said Dr. Michael Gottlieb, a prominent Los Angeles physician who has been treating HIV-infected patients for the life of the epidemic. Their concerns are not unfounded, he said, because a “significant stigma” continues to be attached to gays and drug users, who are disproportionately affected by HIV.

And names-reporting systems have suffered security breaches elsewhere, Gottlieb and others said. He cited an incident this year in Palm Beach County, Fla., in which a confidential list of HIV/AIDS patients was mistakenly e-mailed to 800 health department employees.

“I’m uncomfortable with the state having names,” Gottlieb said. “It’s a potentially very damaging list.”

But California public health authorities say they have taken sufficient measures to guard against such breaches. And after three years, they say, they have enough experience to conclude that codes don’t work.

Codes have made it difficult, and in some cases impossible, for county health officials to exchange information with doctors, eliminate duplicative reports and link HIV with reports of other diseases, these critics say.

The existing system also has hampered follow-up and nullified the option of tracking and notifying the sexual partners of a person who tests positive.

Several advocacy groups for HIV patients in California have held out hope that the federal government would decide to accept data from the state’s code-based system and keep its funding intact. But even they acknowledge the chances of that are almost nil.

Earlier this month, the director of the CDC issued a public letter saying it is critical that all states move as quickly as possible to a names-based HIV reporting system because the country needs a “single, accurate system that can provide national data to monitor the scope of the HIV/AIDS epidemic.”

Some Republicans in Congress have added to the pressure.

“I’m just telling you -- it’s a terrible system,” said Sen. Tom Coburn (R-Okla.) a physician and one of the strongest opponents of coded reporting.

“It’s not accurate and it’s not going to accomplish what it needs to accomplish. California is at risk of losing a ton of money to help the very people” that they contend that they want to help, he said.

California would not be the first state to drop its codes. Texas and Kentucky have made the switch, hoping to maintain federal funding and more easily track the epidemic.

A bill in the California Legislature that would have required switching to names reporting stalled earlier this year, but state officials and advocacy groups predicted it would be resurrected before long.

“I wouldn’t be surprised to see this conversation revisited very soon in Sacramento,” said Darrel Cummings, chief of staff for the Los Angeles Gay & Lesbian Center, an initial opponent of names reporting.

Cummings said the center has consulted legal experts to ensure that any names-based system would protect patient confidentiality.

Between July 2002 and last month, the state received 37,937 reports of patients with HIV, considerably fewer than the 80,000 HIV cases once estimated statewide.

It is believed that a quarter to a third of those who are infected do not know it, so the difference does not entirely result from reporting flaws.

Through the end of June, Los Angeles County had reported 13,914 HIV cases to the state, according to the California Department of Health Services. But the county still has a backlog of nearly 10,000 potential cases to be investigated, said Dr. Douglas Frye, medical director of the county’s HIV epidemiology unit.

Frye said the cumbersome nature of the code system has prevented the county from looking into possible HIV cases quickly and reporting them to the state promptly. Each potential case is taking, on average, a year to investigate, more than twice the goal.

“We’re whittling it down, but it’s very slow,” he said.

Montgomery, the state AIDS director, says it’s time to admit the experiment has failed.

“It really creates a labor-intensive and burdensome system that makes it very difficult for health departments to carry out their responsibilities,” he said.

Health agencies have had problems even when they have dispatched staff to individual doctors’ offices to collect data from medical records. Public health workers have only the codes as a reference, and many of the doctors’ offices keep track of their cases primarily by names. Without a log matching the two, finding the records can take hours.

At one doctor’s office in San Francisco, 35 cases have been locked out of the state reporting system because officials were unable to match codes with patients’ records.

Even so, public health staffers find that up to half the time cases they’ve been sent to investigate match one already reported.

San Francisco had reported 5,753 cases as of last month but still has 2,500 waiting to be investigated. Some of those involve duplicate reports, but officials can’t say how many.

“I think it’s a waste of money, personally, to put resources into a reporting system that doesn’t really function very well,” said Dr. Sandra Schwarcz, director of the HIV/AIDS epidemiology section of the San Francisco Department of Public Health.

Still, some lawmakers resist the switch to names reporting. They say it isn’t clear to them that the state will lose federal funding. Should that change, they say, they will relent.

“I did not want California to become the poster child for the Bush administration’s switch to names reporting,” said state Sen. Sheila Kuehl (D-Santa Monica). “We need to really see that the funding is tied to” the switch.

Montgomery said there is no room for delay, because it can take four years for a new system to get off the ground and for the data to be accepted by the CDC.

Opponents “are not fully appreciating the temperature in Washington and what the intention of Congress is,” he said. “I think we’re going to be hurt.”