HIV Cases Must Be Reported, With Patient Codes, Not Names

Doctors and laboratories for the first time will be required to report newly diagnosed cases of HIV to public health officials, California health officials said Friday.

Under the new system, which takes effect July 1, medical providers would use numerical codes rather than names to correspond to HIV-positive patients.

That approach, which is highly controversial, differs from the practices of 33 other states, which track patients by name confidentially. It also differs from the way California itself tracks 80 other diseases, including full-blown AIDS.

The new system has been the subject of vigorous debate in the state since 1998 when then-Gov. Pete Wilson vetoed legislation that would have created a similar code-based system.

Proponents, including many AIDS activists, say it will allow cases to be tracked without compromising patients’ privacy. Opponents say it will be unwieldy and confusing and will complicate efforts to trace the sexual partners of patients with HIV.

The system is needed to provide a more accurate gauge of HIV transmission, state officials say. AIDS case reports offer little insight into the level of HIV infection because it can take 10 or more years for an HIV-positive person to develop AIDS.

The tracking system will put health officials in a better position to distribute money for HIV and AIDS treatments, services, education and prevention programs. Currently, money is targeted to programs largely based upon anecdotal information and AIDS statistics.

“We’re very pleased with the system that we’ve developed,” said Michael Montgomery, chief of the Office of AIDS within the state Department of Health Services.

“I don’t think that we’re going to please everyone,” Montgomery said, “but I would hope that as information gets out,” people will see its benefits.

Critics, pointing to problems experienced by other states using codes say the new system is destined to fail. They argue that if authorities are to reduce the number of new HIV infections, they must know the names of HIV patients so they can help them find treatment and notify their partners.

“We think that the inability of health departments to get in touch with and work with the people who are infected misses a great opportunity to prevent further transmission,” said Dr. Ron Hattis, a Redlands physician who is secretary-treasurer of Physicians for HIV Control.

Gay leaders and civil rights advocates disagree, saying disclosure of names would violate patients’ privacy and discourage testing.

“We really feel that people still have fears of disclosure,” said Rebecca Isaacs, managing director of the Los Angeles Gay and Lesbian Center. “There’s still stigma around HIV.”

Dr. Gary Cohan, a Beverly Hills physician who treats many HIV patients, said the new regulations are long overdue. “There’s been a lot of foot dragging,” he said.

Under the new reporting system, laboratories would assign a patient a code if a test shows the presence of HIV.

The code would be based on the patient’s birth date, gender and the consonants contained in his or her last name.

At that point, the physician would add the last four digits of the patient’s Social Security number to the code and would report it to the local health agency.

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

The CDC asked states in December 1998 to track HIV infection as an integral part of their AIDS reporting programs, urging that individuals be identified by name but allowing states to use codes.

Federal health officials, though, have said that systems not using names don’t work as well.

Only Illinois, Kentucky, Maryland, Massachusetts, Vermont and Puerto Rico use HIV-reporting codes.

Maine, Oregon and Washington have systems in which the names of HIV-positive patients are initially reported but later replaced with codes.

The California Legislature approved the use of codes as part of its 2000-01 budget bill. The state Office of AIDS proposed its first set of regulations more than a year ago. They cleared their final hurdle Thursday when the state Office of Administrative Law approved them.