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Proposed Project

Surveillance of HIV/AIDS Related Events Among Persons Not Receiving Care-New-National Center for HIV, STD, and TB Prevention (NCHSTP), Centers for Disease Control and Prevention (CDC).

Background and Brief Description

A committee from the Institute of Medicine (IOM) recently reviewed, at the request of Congress, the status of HIV/AIDS surveillance in the U.S. In the resulting report, three populations of interest were outlined, including persons infected with HIV, who have a diagnosis of HIV but are not receiving care.

There are approximately 1 million HIV-infected persons in the United States. Of these, an estimated 75 percent know they are infected, but approximately half of those who know they are infected do not have evidence of having received any medical care for their HIV infection. Existing HIV/AIDS surveillance systems provide little information about HIV-infected persons who are not receiving care, especially those who have never entered care. In addition, an estimate of the size and immunologic status of the latter group is critically important for estimating resources needed to support linkage to care. Furthermore, identifying factors related to not being linked to care will be important in designing effective interventions.

Based on the IOM recommendations and to address the needs described above, CDC is working with state and local health departments in five project areas to pilot a population-based supplemental surveillance system, “Surveillance of HIV/AIDS Related Events Among Persons Not Receiving Care,” also called the Never In Care (NIC) Project. The NIC Project is designed to describe HIV-infected persons who are at least 90 days post diagnosis and have never received HIV care. The project will be conducted over a three-year period and will obtain data on a total of 1,000 persons (approximately 500 per year) with HIV/AIDS. The data collection will include interview-based data only.

The methods were developed in light of recommendations from the IOM, an earlier population-based survey of persons receiving care for HIV infection, and earlier CDC pilots of population-based methods.

For this proposed data collection, participating public health jurisdictions will conduct structured interviews with HIV-infected persons identified using their HIV/AIDS surveillance and supplemental laboratory databases or through HIV diagnostic and case management service providers. The target number of structured interviews is 1,000 over 2 years of data collection. Qualitative interviews will be conducted with the first 75 persons who agree to a second interview. The information to be collected includes demographic data, HIV testing history, high-risk drug use and sexual behaviors, reasons for not using health care and treatment, and unmet needs.

Results from this project will be used to develop estimates of the medical services and resources needed for persons who are infected with HIV, but who have not received medical care and treatment. Additionally, new data related to those not receiving care may be used to design effective interventions for linking persons to care. The data will have implications for policy, program development, and resource allocation at the state/local and national levels.

Users of NIC data include, but are not limited to, Federal agencies, state and local health departments, clinicians, researchers, and HIV prevention and care planning groups. Participation in the data collection is voluntary and there is no cost to respondents to participate in the survey other than their time. The total estimated annualized burden hours is 325.