California Health Officials to Track New HIV Cases

Public health officials in California today will begin requiring physicians and laboratories to report new HIV cases to the state, hoping to better track the disease as it spreads and better target prevention and treatment dollars.

The new policy is a departure from the practice of tracking only cases of AIDS, which meant the state often learned of infections 10 or more years after they had occurred.

But health advocates and experts remain deeply divided about whether the state’s new reporting system will succeed. California is adopting a controversial tracking method--used in only nine other states--in which HIV cases are traced by alphanumeric codes, rather than by name, to protect patients’ privacy.

Thirty-four other states, including New York, track or soon will track HIV cases by name. Legislators and public health officials in those states have taken the position that identities are necessary to more easily communicate with doctors, eliminate duplication of records on the same individual and link HIV databases with registries for other diseases.

Some states also use the name system to gauge whether patients receive timely treatment and assist physicians in notifying sexual partners.

California requires such name-based reporting for 80 diseases, including AIDS, syphilis, anthrax, measles and food poisoning. Many physicians, and some AIDS advocates, say HIV should be no different.

“As long as we treat it [HIV] as something special and separate and so dreaded that you can’t even talk about it, then it’s going to reinforce that view,” said Michael Weinstein, president of the AIDS Healthcare Foundation in Los Angeles.

Supporters of a names-based system also say that states already have the names of HIV-positive patients on file if they receive care through Medicaid or federally funded treatment programs.

Those who prefer using codes say that HIV remains a stigmatizing disease, and that the prospect of having names reported would be enough to keep some patients from being tested for HIV.

“There are ways to create a system that will minimize those fears, if not eliminate them, while giving us the data we want anyway,” said Fred Dillon, policy director for the San Francisco AIDS Foundation.

Perception itself has been enough to shift the debate. Both sides acknowledge that there have been few, if any, recent breaches of security in states that use names in reporting.

A 1998 report by the U.S. Centers for Disease Control and Prevention found problems with the use of codes, also known as unique identifiers, in Texas and Maryland. Codes were incomplete. Authorities had difficulty following up on specific cases with treating physicians. And states were unable to find out whether patients belonged to known risk groups, such as gay men or intravenous drug users.

The accuracy of patient counts is important because, beginning in two years, the federal government will begin distributing treatment money on the basis of each state’s number of HIV and AIDS cases. The government’s funding formula is now based solely on AIDS cases.

A panel of the Institute of Medicine, an arm of the National Academy of Sciences, is studying the issue of HIV reporting, trying to determine the reliability and accuracy of different systems and to learn whether they should be tied to federal funding for treatment.

“It certainly is a problem if you want to give out federal funds in a formula and the formula is based on a process that differs from state to state,” said Michael A. Stoto, a senior statistical scientist at the Rand Corp. in Washington, D.C.

The CDC favors names reporting, calling it the “simplest, most reliable and feasible method currently available,” but the agency has not banned the use of codes.

The experiences of other states may provide some indication of how California’s unique-identifier system will fare. Texas began using a code system in 1994, but dropped it in favor of a names system in 1999.

Texas doctors were required to inform health officials of gender, race and date of birth for all HIV cases. In many cases, doctors left blanks in their reports.

“It wasn’t really getting us solid numbers we could use,” said Dr. Sharilyn Stanley, associate commissioner for disease control and prevention at the Texas Department of Health.

Stanley said coded HIV reporting is an “unbearable obstacle” for physicians because it requires them to track patients in a different way from their normal procedure. “That costs money to the [doctor] and he isn’t going to do it, because he doesn’t have the time,” she said.

Authorities are handcuffed in other ways because of code reporting, critics say. If a private physician is having trouble notifying patients or their partners of HIV test results, the state couldn’t try to reach them. Early notification is critical because infected people may not be seeking treatment and may be unwittingly passing the virus on to others.

Since January, Connecticut has allowed patients to choose between reporting by name or reporting by code. More than 90% of patients have allowed their names to be reported, said Dr. Joxel Garcia, Connecticut’s commissioner of public health.

Previously, all cases were reported with unique identifiers.

“There has been no major concern,” Garcia said. “We don’t want to be the big brother of the patient, but we want to be the partner of the patient. We will be here to protect them.”

In Maryland, officials are standing by their coded reporting system. The system has improved markedly since the CDC reported on the state’s early problems in 1998, said Dr. Liza Solomon, director of AIDS administration at the Maryland Department of Health and Mental Hygiene.

“I don’t believe that you use a surveillance system to find individuals,” Solomon said. “You do it to provide information on what’s happening across a community with changes and trends.”

Maryland has used its system successfully to identify centers of HIV transmission in northwest Baltimore, for example. As a result, the state has reallocated HIV prevention funding to that area, Solomon said.

California is one of the last states to begin tracking HIV cases, in large part because of a tug of war between supporters of public health and defenders of civil liberties.

As early as the 1980s, activists fought efforts to close gay bathhouses, citing personal freedom. Even today, some civil liberties groups oppose mandatory HIV testing for pregnant women, even though health officials say it would enable physicians to prevent infected mothers from transmitting the virus to their babies.

In West Hollywood, the hub of Los Angeles County’s gay population, many people expressed relief Sunday that the state will track HIV using codes, not names.

“It’s not so much, ‘Will the state know?’ as much as, ‘Who else is going to?’ ” said Peter Siegel, 51, an entertainment consultant.

Even a code-reporting system may discourage people from getting tested, said Ramiro Centeno, 33. “People are so paranoid about other people finding out,” he said.

A report released last year by the California Department of Health Services said the number of residents living with HIV and AIDS probably ranged from 107,837 to 124,305. The number of new cases each year probably ranged from 6,788 to 8,988, the report said.

Under California’s new reporting system, laboratories would assign a patient a code if a test showed the presence of HIV. The code would be based on the patient’s birth date and gender and the consonants in the patient’s last name.

The treating physician would add the last four digits of the patient’s Social Security number to the code and report it to the local health agency. If the patient didn’t have a Social Security number, the doctor would use four zeros.

Patients who receive testing at anonymous sites, where they don’t provide their names, won’t be subject to the new regulations.