SPRINGFIELD, IL – The first six months of a two-year trial for a system designed to more accurately track persons in Illinois who test positive for HIV infection has yielded mixed results, Dr. John R. Lumpkin, state public health director, reported today.

State regulations require health care providers to assign a unique patient code number to those who test positive for HIV, the virus that causes AIDS, and to supply other risk, treatment and demographic information in at least 90 percent of the reports for the system to be considered effective.

"After an analysis of the initial reporting period, the results indicate there is a need for improvement," Dr. Lumpkin said. "We are encouraged by the fact that the patient code number is properly assigned in nearly all the reports, but concerned that other key information fields are not being filled out. We look forward to working with physicians, health care providers, advocacy groups and other interested partners to improve the reporting."

While providers did assign a patient code for 99.1 percent of the 1,764 persons with HIV reported to the Illinois Department of Public Health between July 1, 1999, and Dec. 31, 1999, only 74 percent filled in the risk behavior that led to the HIV infection and just 9 percent provided all of the other required information, which includes the name of the health care provider and facility where the diagnosis was made, treatment options offered and provided, and whether the person's sexual or needle sharing partners have been notified.

The Department will evaluate the system's effectiveness over the next 15 months and then decide whether the patient code identifier system should continue or is switched to named HIV reporting on July 1, 2001.

Prior to the launch of the patient code system, the Department had relied, since 1981, on the reporting of AIDS cases to track the epidemic. That method did not accurately reflect the course of the epidemic because of the lengthy period between HIV infection and development of AIDS -- as long as 10 years -- and the recent success of new drug therapies that have been shown to delay the onset of AIDS in some persons with HIV.

The patient code system was suggested as an alternative to a Department proposal to require that the names of HIV-infected persons be reported to local or state public health authorities. HIV/AIDS community advocates and others had voiced concerns that persons might not seek an HIV test for fear that their names would be reported to public health authorities, although studies have shown this occurs in only a small percentage of cases. A work group of medical and public health professionals, community representatives and people living with HIV organized by Dr. Lumpkin developed the alternative system.

The patient code number is made up of a combination of letters from the person's name, date of birth and gender.

Dr. Lumpkin has explained that detailed reporting -- whether through a patient identifier or named reporting -- will generate more accurate data on the prevalence, incidence and future of HIV infection. This, in turn, will help to link those infected with HIV to HIV-related health care services and to ensure HIV-infected persons receive follow-up counseling and partner notification services.

Under the patient code system, a health care provider notifies the local health department of a person with HIV infection, a process similar to the mandatory reporting of about 60 other communicable diseases, such as measles, tuberculosis and AIDS. HIV, however, is the only disease on the list that is reported without a name.

Prior to the patient code system, HIV cases had been reported since 1988 with information about gender, county of residence, age, ethnicity and risk behaviors. But, without an identifier, the Department or local health department had no way to check for or to eliminate duplicates, to track the progression to a diagnosis of AIDS, or to contact the health provider for follow-up to ensure that counseling and partner notification services were provided.

During the final six months of 1999, the Department received reports of 1,764 cases of HIV infection, 72 percent from Cook County. The most frequently reported mode of transmission was men who have sex with men (711), followed by injection drug use (313) and then heterosexual contact with an HIV-positive person (99). The risk behavior in 458 of the cases was unreported.

There were 1,350 HIV cases reported among men (77 percent) and 411 among females. African Americans accounted for 54 percent of the HIV cases (959), followed by whites with 30 percent (537) and Hispanics with 11 percent (201).

Illinois Department of Public Health 535 West Jefferson Street Springfield, Illinois 62761 Phone 217-782-4977 Fax 217-782-3987 TTY 800-547-0466 Questions or Comments