July 1, 1999

HIV PATIENT CODE IDENTIFIER TRIAL BEGINS

SPRINGFIELD, IL – In order to better monitor the incidence of HIV infection and target prevention resources, starting today Illinois health care providers will be required to assign a unique code to persons who test positive for HIV, the virus that causes AIDS.

Since 1981, the Illinois Department of Public Health has relied on the reporting of only AIDS cases to track the epidemic, but that method is no longer reliable because new HIV drug treatments have delayed the progression, in some cases indefinitely, to AIDS and AIDS-related illnesses.

"It is important to accurately record the number of people living with HIV to determine the level of need for HIV/AIDS health care and other services, to apply for federal funds that are awarded based on the number of HIV/AIDS cases and to allocate resources for prevention and care programs," said Dr. John R. Lumpkin, state public health director.

The patient code system was suggested last fall as an alternative to a Department proposal to require the names of HIV-infected persons to be reported to local or state public health authorities. After privacy concerns were raised about named reporting by HIV/AIDS community advocates and others, Dr. Lumpkin organized a work group of medical and public health professionals, community representatives and people living with HIV to develop the patient code number concept.

The code, which uses a combination of letters from the person's name, date of birth and gender, will be tried for two years. Beginning in January 2001, the Department will evaluate the system's effectiveness and, if it fails to meet expectations, switch to a named reporting system by July 1, 2001.

"Our priority is to have in place a reporting system that provides more accurate data about the prevalence, incidence and future of HIV infection; links those infected with HIV to HIV-related health care services; and helps to ensure HIV-infected individuals receive follow-up counseling and partner notification services," Dr. Lumpkin said.

With the new requirement, a health care provider will notify the local health department of a person with HIV infection, a process similar to the mandatory reporting of 54 other communicable diseases, such as measles, tuberculosis and AIDS. HIV, however, will be the only disease on the list that is reported without a name.

The patient code number will consist of the first and third letters of the patient's last name, the number of letters in the patient's last name, an M or F for the gender and the complete date of birth. For example, the patient code number for John Smith, born on July 4, 1968, would be SI5M07041968.

Prior to the patient code system, HIV cases were reported with information about gender, county of residence, age, ethnicity and how they became infected. But, without an identifier, the Department had no way to check for or to eliminate duplicates, 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.

The Department estimates that there may be more than 30,000 HIV-infected persons living in Illinois. Since 1981, Illinois has recorded 22,214 cases of AIDS, the sixth highest total in the United States.

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