Report System on HIV Cases Falters

California’s HIV reporting system has been hobbled in its first six months by the failure of some doctors and clinics to provide the data required by law, county health officials say.

If the problems are not resolved, authorities say, they won’t be able to track the epidemic’s spread. And California risks coming up short as early as next year, when the federal government begins linking its treatment and service grants to the number of state HIV cases.

“It’s a disaster,” Dr. Steven Miles, a physician at the UCLA Center for Clinical AIDS Research and Education, said of the new reporting system.

So far, the state has been informed of only a fraction of the cases that officials believe are out there: 9,155 through Dec. 31 out of 80,000 projected by federal officials.

Moreover, the cases have been reported unevenly: Orange County, with a population of nearly 3 million, submitted 829 HIV cases while Los Angeles County, with almost 10 million residents, reported just 1,064.

Los Angeles County officials say their figure will soon increase by at least 700, after they process cases already submitted by medical providers. Even so, officials still have to find and track an estimated 20,000 HIV cases in the county.

The tracking system, set up under state rules that took effect July 1, requires medical providers and laboratories to report all new HIV infections. Each patient is given an alphanumeric code to protect privacy. Doctors are required to provide additional medical information, as well as data on race and risk factors.

The system was designed to help public health officials better track the disease and target prevention and treatment dollars. Previously, the state required reporting of AIDS cases only, which meant that officials often learned of HIV infections 10 or more years after they had occurred. HIV, the human immunodeficiency virus, causes AIDS.

Although most laboratories are reporting their results to local health departments, some doctors are balking, saying the requirements are too burdensome. Others aren’t complying because they aren’t versed in the new regulations.

“I’d like to help them, but I really don’t have the time to do the paperwork that they’re asking me, so I’m not doing it,” said Dr. Bisher Akil, a Los Angeles physician who treats about 200 HIV and AIDS patients,.

Michael Montgomery, director of the Office of AIDS at the California Department of Health Services, said growing pains are to be expected in the first few years of a new tracking system. “Nobody thought it was going to be easy,” he said. All in all, Montgomery said, “it looks to me that we’re escaping the problems that some of the other states are experiencing.”

For instance, Montgomery said, most of the HIV case reports contain information on patients’ risk factors -- such as drug use and sexual orientation -- that other states have struggled to compile.

The most daunting part of building an HIV reporting system comes in the first months. Public health agencies must collect information on all HIV cases, new and old, even those that go back many years. The expectation is that, after a couple of years, doctors will have reported all old cases, and tracking new cases will be much more manageable.

But Los Angeles County officials said the first six months have been more difficult than they had expected. Because of incomplete or nonexistent information from medical providers, the county reported fewer than 10% of the more than 7,000 potential cases identified by laboratory tests through December.

Before a case can be reported to the state, county officials must receive data from a medical provider.

“If we don’t change, it’s going to take us several years” to get existing cases reported, “and we don’t have that much time,” said Gordon Bunch, director of HIV epidemiology with the Department of Health Services.

Officials in Ventura County say they have grown so frustrated that they have threatened to fine several medical providers who didn’t report their cases.

“This is an incredibly imperfect system that we’re working with,” said Lynn Bartosh, a community service coordinator with Ventura County Public Health. “This is exactly what we were wanting to avoid.”

Some doctors and clinics say the use of codes hampers the new system’s efficiency and usefulness. They note that all other reportable diseases are tracked by patient name.

“It was a bad idea legislatively and it’s a worse idea in practice,” said Michael Weinstein, president of the AIDS Healthcare Foundation in Los Angeles, which had advocated reporting of HIV by name.

Bunch concedes that the county would be a lot further along if it used names in reporting HIV cases. But he said the code system deserves an opportunity to prove itself. Six months “would be far too premature to call it a failure.”

Montgomery said reluctant doctors need to realize that the state’s ability to track HIV cases will be directly correlated to federal funding for services.

Some health departments have had better luck with physician reporting than others.

“There was a lot of effort put into helping people understand” how the new system works, “and maybe that made a big difference for us,” said Penny Weismuller, of the Orange County Health Care Agency.

San Francisco health authorities said they have been successful largely because city workers go to physicians’ offices to collect the necessary information themselves from patients’ medical records.

Providers are “really swamped,” said Dr. Sandra Schwarcz, the city’s director of HIV/AIDS statistics. “I’m sure they’re going to prioritize taking care of a patient over sending in a case report form.”

Los Angeles County officials said they are starting to take the same approach, and many clinics say they welcome the county’s assistance. To add incentive, L.A. County officials plan to make timely reporting a condition of grant funding.

Miles of UCLA said he finds it ironic that county health workers are being allowed to peruse medical records, complete with patient names, when the whole goal of code reporting was to protect patients’ privacy.

But Dr. Douglas Frye, a medical epidemiologist with the Los Angeles County HIV epidemiology program, said the names may be seen but are not recorded. In any case, the stakes for making the system work are high for the county and the state.

“Los Angeles County historically has reported 35% of the cases in the state,” Bunch said. “If we fail, the state fails.”