Statement of Task

How do we obtain national estimates that characterize the health care of people living with HIV in public and private settings?

  1. How can we obtain data from a nationally representative sample of HIV-positive individuals in the United States to establish a baseline for health insurance and health care access status prior to 2014?
  2. If it is not possible to obtain a nationally representative sample of people living with HIV, are there other alternatives (including using multiple existing data sources or requiring a complete accounting of all positive persons in care) to obtain data on care and utilization beyond those individuals enrolled in the Ryan White HIV/AIDS Program?
  3. How do we continue to regularly obtain data from a large sample (nationally representative or otherwise) of HIV-positive individuals after 2014 to monitor the impact of the Patient Protection and Affordable Care Act on health insurance and health care access?

that will improve access to health coverage and care for people with HIV include expansion of the Medicaid program in some states2 to include non-Medicare-eligible individuals with incomes up to 133 percent of the federal poverty level3; closure of the Medicare Part D prescription drug coverage gap; increased access to private health insurance and consumer protections; and expansion of coverage for preventive services. This report addresses how to monitor the anticipated changes in health care coverage, service utilization, and quality of care for people with HIV within the context of the ACA. The committee’s two reports, although distinct, do overlap in certain ways. For example, it will be important to monitor care quality using indicators such as those recommended in the committee’s first report in addition to tracking the movement of individuals into and among different sources of health coverage, which is the focus of the present report.


2On June 28, 2012, the U.S. Supreme Court ruled that the Medicaid expansion provision of the ACA, which would withhold federal funding for Medicaid from states that failed to comply, was unduly coercive, meaning that states cannot be penalized for choosing not to participate in the new program by taking away existing Medicaid funding. As a result, states are likely to exhibit greater variation than anticipated in the scope of eligibility in their Medicaid programs.

3A standard 5 percent income disregard effectively increases the limit to 138 percent of the federal poverty level.

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