December 2, 1997
See also: Confidential HIV Case Reporting
Isn't confidential named HIV infection reporting experimental? No. We estimate that about 40% of living HIV-infected persons in Oregon are already reported to the Oregon Health Services (OHS) by name. These include asymptomatic persons with low lymphocyte counts, others with AIDS defining infections, and infected persons in special categories (e.g., children under age six, blood donors). Colorado first established confidential named reporting in 1989. Since then, 27 other states have established confidential named HIV infection reporting. These include states with high rates of HIV (e.g., New Jersey, Florida) and more rural states (e.g., Missouri, South Carolina).
Doesn't reporting names delay testing among people at high risk for HIV? No. It appears that fear of finding out they are infected keeps most people from getting tested. In CDC's AIDS Patient Study (APS), 300 Oregonians with recently diagnosed AIDS were surveyed to assess their reasons for delaying HIV testing. 81% indicated that their main reason for delay was one that suggested disease denial ("afraid of finding out they were infected;" "unlikely they were infected;" "little could be done if they were infected"). Only 1% stated that the main reason for delay was concern about having their name reported to the health department.
Among 332 Oregonians at-risk for HIV infection (gay men, injection drug users, heterosexual persons with a new sexually transmitted disease diagnosis) who were also surveyed, 72% indicated their main reason for delay was one that suggested denial. Only 1% stated that the main reason for delay was concern about having their name reported to the health department.
OHS recognizes many people still have fears about loss of their anonymity and may delay testing. Along with confidential named reporting, anonymous testing will still be available at local health departments.
Won't HIV-infected undocumented persons be afraid to seek health care services? There are no surveys or other data to help answer this. Public health services delivered by local health departments and OHS are delivered to everyone regardless of citizenship. As with all public health programs and all reportable diseases, OHS has no obligation or intent to work with the Immigration & Naturalization Service to share information about undocumented persons.
Haven't breaches of confidentiality related to HIV-infection already occurred in Oregon? No formal complaints of breached confidentiality have been brought forward to OHS or any county health departments. Many Oregon statutes are in place that enable health departments to immediately dismiss or punish public health employees that violate these statutes. Along with local county health officials, several community-based organizations, and other advocates, we are discussing procedures to inform infected persons of their rights to privacy and accommodate complaints of potential breaches of confidentiality.
< name="testdrop">Doesn't HIV testing always drop when confidential named HIV infection reporting is implemented? No. Results of a CDC six state survey in Nebraska, New Jersey, Louisiana, Michigan, Nevada, and Tennessee to measure changes in HIV testing in the year following initiating named reporting showed:
- 4 states actually increased the total number of HIV tests performed after named reporting was implemented. The increases ranged from 5% to 63%. One state had a 2% decrease and one had a 10% decrease.
- HIV testing significantly increased in whites in 5 states; in African Americans in 3 states; in gay/bisexual men in 4 states; in injecting drug users in 3 states; and among high-risk heterosexuals in all 6 states.
Why should prevention be a goal of confidential reporting? Everyone is already receiving HIV prevention education already .... aren't they? For most newly recognized infections, no one knows. Nearly 75% of newly recognized infections are diagnosed by private providers, and we do not know the prevention message given by each provider. In a May 1997 survey of private physicians who provide the majority of medical care for HIV-infected persons in Portland, most physicians felt that HIV prevention services were not being addressed. Specifically, 25% of the providers felt that they were unable to provide any prevention services; 67% said such services were being met depending on the patient's insurance carrier; and only 8% felt prevention services were being provided in their practice.
Why should telling people about treatment options be a goal of confidential reporting? Everyone is already receiving this information .... aren't they? No. Of the 300 Oregonians surveyed in the APS, 30% claimed that at least one month passed between diagnosis of their infection and seeking medical care. For half of these people, the delay was from 8 months up to 10 years. Persons who delayed were more likely to be people of color and less likely to have ongoing medical care before their diagnosis. In addition, they were less likely to be told where they could receive medical care after they were found to be infected
Isn't unique identifier reporting a better system than named reporting? Only 2 states (Texas and Maryland) currently use unique identifier (UI) reporting. In a recent report, the Texas Department of Health (TDH) evaluated their UI reporting system over a three year period and called the performance of their system poor. Of 32,000 HIV infections reported from April 1994 through June 1997, more than half were missing at least one element of the UI (usually the SSN) and, as a result, could not be included in the reporting system. Despite the improved reporting in the most recent year of reporting, TDH reports that during the best performance of the system, 30% of the reports were discarded due to incomplete UI. After this evaluation, TDH concluded that unique identifier reporting is not a satisfactory tool for monitoring HIV infection. Maryland has not yet published an evaluation of their UI system.
Will the names of HIV infected individuals ever become public record? No. In absolutely no circumstance will the names of HIV infected individuals received by any health department become public record or be published. Names will be kept completely confidential and are available to public health officials working under specific public health laws.
How will the implementation of named HIV infection reporting effect HIV testing of pregnant women? There will be no change from the current recommendations. OHS supports the U.S. Public Health Service's policy of universal HIV counseling and VOLUNTARY testing for all women who are pregnant or considering pregnancy.
Who endorses named HIV infection reporting? Named reporting is endorsed by several public health groups that continue to support the civil rights of all HIV-infected persons -- the Council of State and Territorial Epidemiologists, National Alliance of State and Territorial AIDS Directors, the Association of State and Territorial Health Officials, and CDC.