Confidential HIV Case Reporting
December 2, 1997
See also: Frequently Asked Questions regarding HIV reporting
HISTORY OF HIV REPORTING (SURVEILLANCE)
- AIDS case reporting by name has been done nationally since 1989. HIV case reporting by name is currently performed in 27 states and a 28th state, New Mexico starts in 1998.
- Additionally, two states (MD and TX) report HIV cases using "unique identifiers" such as a partial social security number plus birth date, race and sex.
- Early in the epidemic, AIDS case reporting provided a reasonable reflection of the HIV epidemic because of the fairly predictable course of HIV disease from infection to AIDS.
- Untreated HIV disease progresses to AIDS in approximately 10 years. In essence, then, the number of AIDS cases presented a "snapshot" of the HIV epidemic taken 10 years previously. With recent medical advances, which can delay the progression of HIV infection to AIDS, that is no longer the case.
WHAT IS SURVEILLANCE? HOW IS IT USED?
- AIDS surveillance records the number of AIDS cases reported. Although a person may have had HIV for a long time, a case of AIDS (Acquired Immunodeficiency Syndrome) is reported only after a person's illness progresses to certain benchmarks determined by the Centers for Disease Control and Prevention (CDC).
- HIV case surveillance, on the other hand, records the number of cases of HIV diagnosed, and therefore includes all persons who test positive for HIV antibodies whether or not they have developed AIDS.
- As with any infectious disease epidemic, information from surveillance is used to guide a variety of disease prevention and service programs. For example:
- Public health planners and administrators need to know the number of HIV infections to ensure that sufficient medical care will be available in specific geographic areas.
- Specific information about people who acquire HIV including age, sex, racial/ethnic background as well as risk behaviors is essential for planning and evaluating effective HIV prevention activities.
- Federal funds for HIV prevention and services are allocated to states based on surveillance data. Accurate information is required to receive fair and adequate funding needed to serve people living with and at risk for HIV.
WHY CHANGE THE WAY HIV DISEASE IS REPORTED IN OREGON?
- AIDS case surveillance began even before the agent causing the disease was identified. AIDS case surveillance, however, tracks only late-stage HIV disease.
- New medical therapies for the treatment of HIV disease are now available, and are effective in delaying the progression to AIDS for some people. Therefore, a surveillance system based on late-stage disease (AIDS) no longer provides an accurate picture of the HIV epidemic.
- Revising our way of monitoring the epidemic to include confidential named HIV case reporting would give health care providers and prevention planners much more accurate information about emerging trends.
IMPROVING SURVEILLANCE OF HIV DISEASE IN OREGON
- The Oregon Health Services and the HIV subcommittee of the Conference of Local Health Officials (CLHO) have drafted a proposal that would expand Oregon's current confidential AIDS case reporting system to include all known HIV infected persons. That is, physicians and laboratories would report all persons diagnosed with HIV just as they currently report all persons with AIDS. Additionally:
- health departments would contact the reporting health care provider to determine if an infected person would benefit from HIV-specific counseling to facilitate access to comprehensive care services including medical, psychosocial and case management,
- anonymous (no-name) HIV counseling and testing would still be available, and
- the reporting system would include strong protections against breaches in confidentiality.
BENEFITS OF CONFIDENTIAL HIV CASE REPORTING
- Confidential named HIV reporting allows:
- accurate monitoring of the HIV epidemic and its changes among populations at risk,
- targeting of HIV prevention services for populations at greatest risk for HIV infection,
- early linkage of people living with HIV to health and social services which can prolong their health and minimize HIV transmission to partners and children, and
- accurate allocation of funding for HIV services provided through Ryan White C.A.R.E. Act formulas.
- The HIV epidemic in this country has a history of stigmatization and marginalization of people infected and affected by HIV. People with and at risk for HIV have expressed very real concerns about confidential named HIV reporting. Among these concerns are:
- medical care providers and staff may breach confidentiality or discriminate against HIV positive persons,
- some people may avoid testing and actually delay their access to medical care and social services unless they sill can be tested anonymously and understand that,
- if breaches of confidentiality occur, especially in small communities, persons with HIV or those with known risk behavior may suffer discrimination and/or reprisal.
- HIV positive people entering care could be identified by their lab work, and
- other reporting systems might achieve the same benefits with less risk to confidentiality.
WHAT IS BEING DONE?
With advice and consultation from community based AIDS service organizations the CLHO-HIV Committee and the Oregon Health Services are working together to address this important issue. Should the CLHO-HIV subcommittee and the full CLHO committee agree that a change in administrative rules concerning HIV/AIDS surveillance is necessary, public hearings would be held. In light of consumer concerns, intensified training about confidentiality and diversity issues for public health service providers and staff may be indicated regardless of any changes in Oregon's surveillance policy.