Wed, 8 Oct 1997
Policy Position Paper on Monitoring of the HIV Epidemic
The following criteria define National Association of People With AIDS [NAPWA] position on the responsible and ethical approach to monitoring the HIV/AIDS epidemic in the United States.
Collectively, these fourteen criteria define a comprehensive approach to both our nation's surveillance system and our nation's HIV counseling and testing system, as well as federal public policy and civil rights concerns.
1. Under no circumstance does NAPWA support HIV named reporting, the CDC's promotion of a national standard in support of HIV named reporting or the creation of a federal name-based registry of people living with HIV/AIDS.
The CDC should in no way encourage or require states to do HIV named reporting.
2. NAPWA guardedly supports the expansion of our national HIV/AIDS surveillance system to include HIV infection case reporting; however, only using unique or coded identifiers that insure privacy and confidentiality of the individual.
3. The CDC must aggressively promote, expand and improve anonymous HIV testing in the United States. The availability of readily accessible anonymous testing is a necessary condition/prerequisite for any maintenance and/or expansion of HIV surveillance in the United States. CDC must mandate readily accessible anonymous testing in all HIV Prevention Cooperative Agreement jurisdictions as a condition of establishing HIV surveillance tools nationally.
4. CDC-funded research has shown that certain individuals and/or communities will only use anonymous testing sites. Therefore, access to primary care (after testing positive) is predicated upon the availability of anonymous testing.
5. CDC's HIV/AIDS surveillance's primary goal is to collect useful data in a timely fashion to provide an accurate estimate of the prevalence of HIV/AIDS in the United States. Accordingly, HIV/AIDS surveillance has to provide reliable data. As such, while it is a goal of anonymous and confidential counseling and testing to link individuals into services, this is not necessarily either a goal or an outcome of surveillance.
6. The applied uses of reliable, accurate and timely surveillance data include informing: resource allocation; health planning; and evaluation of both programmatic as well as system-wide activities (i.e. access to care, survival/death rates, seroincidence rates, etc.).
7. As a guiding principle, unless a name is uniquely essential for the protection and promotion of an individual's health and well-being or a community's health and well-being, the name of the person whose information is being reported to the state or local health department should not be taken.
8. Surveillance is an adaptive science. As such, surveillance systems should be constantly re-evaluated to determine if the goal of applying surveillance data to meaningful education, programs, planning and resource allocation is happening. If not, these systems should be discontinued.
9. Surveillance systems consist of several different types of activities in addition to case counting (number of individuals living or deceased who have said disease): sentinel studies; incidence and prevalence studies (density of disease and breadth of disease); and even behavioral (risk-taking) surveillance. The more varied the surveillance system, the more relevant the data sets that result.
10. Decisions regarding what type of HIV/AIDS surveillance to implement in a given jurisdiction are best made by each jurisdiction based on resources, community acceptance, confidentiality/privacy protections, the severity of the epidemic, and other local considerations.
11. Data from HIV case reporting must be appropriately disseminated to the community planning bodies within jurisdictions for use in both prevention and care planning.
12. Categorical funding for HIV/AIDS surveillance must be maintained and augmented. However, resources for HIV/AIDS surveillance must not come at the expense of resources for HIV-related research, care and prevention (both primary and secondary) programs.
13. National HIV/AIDS public health policy should reinforce that the data collected under this system must remain decoupled from partner notification and contact tracing processes. These processes' relationship to surveillance must be made only as a component of and only with the explicit concurrence from the jurisdiction's HIV Prevention Community Planning group.
14. Federal law must establish an individual's enforceable right to privacy with respect to individually identifiable health information, and must protect each person from discrimination based on real or perceived health and/or genetic status. Such laws must include strong and enforceable repercussions for those individuals and systems that breach an individual's confidentiality and/or privacy.
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