February 11, 1998

SPRINGFIELD, IL -- The Illinois Department of Public Health plans to file a new rule that would require health care providers to report to the state the names of people who test positive for HIV, following the same practice used for 60 other infectious diseases, including tuberculosis, syphilis and gonorrhea, Dr. John R. Lumpkin, state public health director, announced today.

"We have carefully studied the issue of named reporting for two years and believe the time has come to treat HIV like other sexually transmitted diseases," Dr. Lumpkin said. "For years it has been argued this disease should somehow be treated differently because of the social stigma attached to it. Disease prevention, however, is a medical problem that needs to be treated through proven public health solutions."

Dr. Lumpkin said the proposed rule, which could be in place in 90 to 120 days, would provide the following benefits:

· Link those infected with HIV to HIV-related health care services. Through post- test counseling, those infected could receive information about HIV-related services that are available, including the Department's $16 million AIDS Drug Assistance Program (ADAP). ADAP provides 64 drugs at no cost to Illinois residents who do not have adequate insurance coverage, do not make more than two times the federal poverty level and are not eligible for Medicaid.

• Ensure that HIV infected people receive necessary follow-up counseling and partner notification services. A U.S. Centers for Disease Control and Prevention (CDC) study of Illinoisans testing positive for HIV in private settings found only 25 percent received counseling with their test results and partner notification services are not routinely offered.
• Provide more accurate data about the prevalence, incidence and future of HIV infection and the AIDS epidemic. The current system of monitoring the epidemic relies on tracking AIDS at its most advanced stage and is no longer effective, since better drug therapies are keeping the virus in check and delaying the progression to AIDS-related illnesses and death. There can be a delay of 10 or more years between infection and AIDS, while a positive test for HIV would reflect a more recent infection.

Thirty-one states now require named reporting of persons who test positive for HIV, including the Illinois border states of Indiana, Missouri and Wisconsin. CDC has urged Illinois and the other states to mandate HIV named reporting.

One reason Illinois delayed a decision was that AIDS advocates argued named reporting might deter people from getting tested and receiving early treatment. However, preliminary results of a CDC study of nine states that require HIV named reporting found only 1.4 percent of the persons who put off testing cited named reporting as the primary reason. In some states, the CDC found, an initial decline in testing was followed by an increase to previous levels or higher.

For those with concerns about confidentiality, Dr. Lumpkin said the Department will continue to fund 64 anonymous counseling and testing sites through local health departments around the state. However, when an HIV infected individual seeks testing and treatment by a doctor, his or her name would be reported to the state.

While advocacy groups also have raised concerns about invasion of privacy, Dr. Lumpkin said the state's record in maintaining confidentiality of the names of thousands of persons with reportable diseases, including AIDS, is unblemished. The state has recorded the names of 20,386 persons with AIDS since 1981, the sixth highest total in the United States. In addition, legislation pushed three years ago by the Department closed a loophole in the AIDS/HIV confidentiality laws by protecting records from discovery even in civil lawsuits.

The Department estimates that there may be more than 30,000 HIV infected persons in Illinois. HIV cases are now reported to the state with information about gender, county of residence, age, ethnicity and how they became infected. But without a name, the Department has no way to check for or to eliminate duplicates, or contact HIV positive persons to offer counseling and partner notification services.

Besides CDC, named reporting has been endorsed by the Illinois State Medical Society, the American Medical Association, the Association of State and Territorial Health Officials and the New England Journal of Medicine.

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