Illinois to Report Cases of HIV by Name in 2006

Under these circumstances, the AIDS Foundation of Chicago supports IDPH’s decision, which is in the best interest of Illinoisans living with HIV. (See AFC’s press release by clicking here).

In order to move successfully toward name-based HIV reporting, public health officials will work closely with stakeholders—including AFC—to review internal procedures and confidentiality protections. AFC will also help educate community members, lawmakers, and the media about HIV/AIDS surveillance and its important role in service planning and program development.

Future Funding in Jeopardy

Currently, 38 states report HIV data by name while 12 states and the District of Columbia report HIV data using a code-based method other than names. One of the most significant challenges facing Illinois and the other jurisdictions that currently collect HIV data by code is the longstanding refusal of the Centers for Disease Control and Prevention (CDC) to accept and integrate data from code-reporting jurisdictions into national HIV estimates. After a great deal of debate on this issue, CDC has officially recommended that states adopt a name-based system to assist in efforts to un-duplicate data between states and achieve uniform reporting across the nation.

In its recently released proposal for CARE Act reauthorization, the Bush administration affirmed its position to include HIV data as part of funding distribution formulas beginning in fiscal year 2007. With CDC’s refusal to accept HIV data from states using a code-based HIV reporting system, Illinois stands to lose millions of federal dollars for essential HIV medical and social services if it retains its current system.

Officials in at least ten other jurisdictions, including California, Massachusetts, Washington, and Philadelphia are also planning to move to named-based HIV reporting.

History of HIV/AIDS Surveillance in Illinois

HIV, AIDS, and STD surveillance is an essential component of a strong public health response to these communicable disease epidemics. Complete and accurate HIV/AIDS information has been essential in guiding service planning and HIV/AIDS public policy and in deploying scarce public resources for HIV prevention, housing, and care to those in greatest need.

Illinois has used name-based AIDS reporting since the early 1980s. With this surveillance system, AIDS cases are reported by healthcare providers to the state health department with the names of the persons diagnosed, and in turn, these cases are reported to the national surveillance system at CDC without names or any personal identifiers.

In an effort to enhance the capacity to track, monitor, and respond to emerging trends in the HIV/AIDS epidemic, the State of Illinois established a statewide HIV surveillance system in the spring of 1999. Following intense debate among public health officials, physicians, and community stakeholders concerned about privacy, confidentiality, and HIV stigma, Illinois established a code-based, rather than name-based, HIV reporting system in July 1999. HIV community advocates have been especially supportive of code-based reporting as a way to promote acceptance of HIV testing, care services, and partner notification activities.

Code-based HIV surveillance has been successful in Illinois. Through the use of unique alphanumeric identifiers for HIV reporting and with the cooperation of hundreds of physicians, testing clinicians, and local public health workers, Illinois has recorded more than 13,000 cases of HIV diagnoses since 1999. HIV case data is helping to identify emerging trends in the epidemic and informing how Illinois should best deploy scarce public resources for HIV prevention, care, and housing services.

Two cases of confidentiality breaches involving name-based reporting in the state of Florida earlier this year have heightened community concerns about the security of name-based HIV/AIDS records. It is important to note, however, that there have been no known cases of unauthorized disclosures of HIV or AIDS information from the surveillance systems in Illinois.

State and Federal Laws Protect Confidentiality of People with HIV/AIDS

Public health employees cannot be subpoenaed or deposed to release information about a person with HIV, nor can they be questioned in civil or criminal legal proceedings about the existence or content of reportable disease information. Confidential information is not shared with other state or federal agencies (including the CDC), police, immigration, insurance companies, employers, school officials, or family members of the person with HIV.

Only by working to protect people with HIV from confidentiality breaches and the harmful effects of stigma and discrimination can we make further strides in promoting greater utilization of HIV testing, prevention, and care services.

Public Health and Community Advocates Support Switch to Names

Recognizing the mounting pressure against code-based HIV reporting and the need to ensure funding to sustain and expand HIV prevention and care systems across the state, officials with the Illinois Department of Public Health, the Chicago Department of Public Health, AFC, the AIDS Legal Council of Chicago, and others believe a switch to name-based HIV reporting is warranted. In addition, AIDS advocates have urged state officials to do the following:

• Educate affected communities about HIV/AIDS surveillance, existing confidentiality protections, and the benefits of seeking HIV testing, prevention, and care services: Recognizing that these issues may be confusing, Illinois officials will need to meet with stakeholders statewide to discuss why a switch to name-based reporting is necessary and how communities statewide will benefit. To assist concerned groups and individuals, AFC has developed a set of “Frequently Asked Questions” on HIV/AIDS surveillance.