SPRINGFIELD, IL – The Illinois Department of Public Health has decided to extend until 2003 a trial system implemented to more accurately track the course of the HIV epidemic in Illinois, Dr. John R. Lumpkin, state public health director, announced today.

On July 1, 1999, the Department began what was to be a two-year experiment that required health care providers to generate a unique patient code number (PCN) for those who test positive for HIV, the virus that causes AIDS, and to supply other risk, treatment and demographic information. Today's announcement delays until July 2003 the decision to keep the PCN surveillance system or to replace it with HIV reporting by name.

"In order for there to be a fair and complete analysis, the Department will continue its evaluation of the system for an additional two years," Dr. Lumpkin said. "Initial results have indicated there is a need for improvement, but a longer study will make clear whether or not this system will provide the quality of data necessary to direct community prevention and treatment programs."

Over the next two years, the Department will be assisted by a team from the U.S. Centers for Disease Control and Prevention (CDC) in evaluating the performance levels of those reporting HIV cases and the criteria being used to judge the success of the system.

CDC guidelines for HIV data call for strict confidentiality procedures and protections, quality standards to ensure completeness of the data, timeliness in reporting, unduplicated reports and the ability to follow-up with providers on cases of public health importance.

Prior to the launch of the patient code system, the Department had relied, since 1981, on the reporting of AIDS cases by name to track the epidemic. With treatment advances and the success of new drug therapies, which have slowed the progression of HIV to AIDS for many individuals for 10 years or longer, data on AIDS cases alone no longer accurately represent the current impact of the epidemic. Although these data remain important to evaluating access to care and identifying changes in disease trends, they can no longer be reliably used to reflect the course of the epidemic or to direct prevention efforts.

The patient code number system was 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 voiced concerns that persons might not seek an HIV test for fear their names would be reported to public health authorities. Dr. Lumpkin organized a work group of medical and public health professionals, community representatives and people living with HIV who agreed on 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 confidential named reporting -- will generate more accurate data on the prevalence, incidence and future of HIV infection. These data then allow the Department to monitor changes in the epidemic, such as increases in cases among minorities and women and through heterosexual contact, and to tailor prevention programs to those traditionally at risk and those newly understood to be at risk.

Under the patient code number system, a health care provider notifies a local health department about 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.

HIV cases had previously 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 could not check for or eliminate duplicates, track the progression to a diagnosis of AIDS or contact the health provider to ensure the infected person had received the appropriate counseling and partner notification services.

While providers did assign a patient code number for 99.8 percent of those persons with HIV reported to the Department between July 1, 1999, and Dec. 31, 2000, only 75 percent filled in the risk behavior that led to the HIV infection and just 43 percent provided all of the other required information in 11 fields, including 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 were notified.

During the 18 months since the patient code number system began, the Department has received reports of 4,389 cases of HIV infection, 75 percent from Cook County. The most frequently reported mode of transmission was men who have sex with men (1,699), followed by injection drug use (713) and then heterosexual contact with an HIV-positive person (305). The risk behavior in 1,149 of the cases was unreported.

There were 3,233 HIV cases reported among men (74 percent) and 1,155 among females. African Americans accounted for 54 percent of the HIV cases (2,374), followed by whites with 31 percent (1,381) and Hispanics with 11 percent (500).

The Department estimates that there may be more than 30,000 HIV-infected persons living in Illinois. Since 1981, Illinois has recorded 25,270 cases of AIDS, the sixth highest total in the United States.