Sept. 24, 1998

SPRINGFIELD, IL — Beginning July 1, 1999, the Illinois Department of Public Health will pilot for two years a patient code number system for health care providers to use when reporting HIV cases, Dr. John R. Lumpkin, state public health director, announced today.

Dr. Lumpkin said his decision resulted from public comment and community concerns about the Department's proposed HIV named reporting that suggested it possibly could deter HIV-infected persons from seeking testing and treatment.

A work group of medical and public health professionals and members of the at-risk and affected community organized by Dr. Lumpkin after named reporting was proposed last February, offered the patient code number system as an alternative.

"Our priority was and continues to be the implementation of a reporting system that will link those infected with HIV to HIV-related health care services, ensure that HIV-infected people receive necessary follow-up counseling and partner notification services, and provide more accurate data about the prevalence, incidence and future of HIV infection and the AIDS epidemic," said Dr. Lumpkin.

"The work group acknowledged that public health officials routinely handle confidential records without disclosure," said Dr. Lumpkin. "However, there was concern that the specter of unlawful disclosure would create a barrier to individuals seeking testing and treatment."

The patient code number system, which is similar to that used in some other states, is intended to create an environment that would encourage those at risk to be tested and would ensure that public health objectives are met. Provisions in the rules will allow follow-up by physicians and other health care providers.

Since a patient code number system is difficult to implement, the Department must provide a back-up system. If the patient code system fails to meet specified performance standards by the end of the two-year trial period, name-based reporting then would be adopted.

Consistent with the recommendations of the work group, the Department is changing the proposed rules as follows:

• Physicians will be required to report, using a provider generated patient code number, all cases of HIV treated or diagnosed after July 1, 1999. The patient code number will be generated using a system developed by the Department and based on demographic information and elements of the patient's name and other information.

• The rules establish criteria that this surveillance system will be required to achieve over a two-year period.

• The Department will begin gathering data when the system goes into effect and will conduct a formal evaluation beginning on January 1, 2001, that will be completed no later than July 1, 2001.

• Based on recommendations from the U.S. Centers for Disease Control and Prevention and on the Department's experience with the named reporting of AIDS cases, named reporting of HIV cases would be implemented July 1, 2001, if the patient code number system fails to meet the established criteria.

These new changes will be considered by the legislature's Joint Committee on Administrative Rules at its October meeting.

The current system of reporting needed to be revised because it relies on tracking AIDS at its most advanced stage and is no longer an effective way to monitor the epidemic and to target resources. Better drug therapies are delaying the progression from HIV to AIDS-related illnesses and death. Identifying HIV infection early can help to link people to necessary services and potentially extend their lives.

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