Question 2: What are the number and characteristics of persons who know they are HIV-positive but who are not receiving HIV primary medical care?

HRSA’s HIV/AIDS Bureau is working to develop methods to help grantees assess the number of persons who know they are HIV-positive but who are not receiving HIV primary medical care. A recommended framework is described here.

The following definitions can be strengthened or expanded by a jurisdiction to include, for example, additional HIV-related services. However, the basic definitions meet minimum HRSA requirements for operational definitions.

Unmet need for HIV primary medical care⁶: No evidence of any of the following 3 components of HIV primary medical care: viral load testing, CD4 count, or provision of antiretroviral therapy during a 12-month period.

Met need for HIV primary medical care: Demonstration of one or more of the 3 components during the specified 12-month period.

The framework uses 2 types of inputs―population size and care patterns. To measure unmet need for HIV primary medical care according to the basic operational definition, you must first determine the population size inputs and the care pattern inputs for a particular geographic area. The geographic area could be a state, an EMA, or another geographic area, such as a county, region, or public health service area.

• Population size: The measure of how many people with HIV disease are living in the area during a particular period. These data come mainly from AIDS and HIV case surveillance.
  Data needed are:

  1. number of people living with AIDS (PLWA) (i.e., aware of status)
  2. number of people living with HIV, without AIDS (PLWH) (i.e., aware of status)
  Note: Combining a and b results in the total number of persons who know they are HIV infected.
• Care patterns: Measures of how many HIV-infected persons who are aware of their status are receiving primary HIV medical care from any provider (not just Ryan White CARE Act care providers). These data may come from several possible sources: CD4 and viral load reporting in surveillance, studies (e.g., Adult Spectrum of Disease), claims databases (e.g., Medicaid and AIDS Drug Assistance Program), or other sources. Total-count methods provide data in numbers; methods based on sampling typically provide data as percentages.
  Data needed are:
  3. percentage or number of PLWA that meet primary care definition
  4. percentage or number of PLWH that meet primary care definition
  Unmet need = (a − c) + (b − d).
  (a – c) = unmet need among PLWA
  (b – d) = unmet need among PLWH

  Method 1
  A simple framework using data on counts of population and care patterns:
  a = number of persons living with AIDS (PLWA)
  b = number of persons living with HIV (PLWH)
  c = number of PLWA who received specified services in 12-month period
  d = number of PLWH who received specified services in 12-month period

Example: Unmet need in State X
In State X, there were 4,291 persons living with AIDS and 3,942 persons living with HIV. The proportion of persons living with AIDS who received primary medical care within the past 12 months was 62%. The proportion of persons living with HIV who received primary medical care within the past 12 months was 27%.
a = 4,200
b = 3,900
c = 3,600
d = 2,000

Unmet need
= (a − c) + (b − d)
= (4,200 – 3,600) + (3,900 – 2,000)
= 600 + 1,900
= 2,500 persons

Method 2
A simple framework using counts of population and care patterns based on sampling:
a = number of PLWA
b = number of PLWH
c = % of PLWA who received specified services in 12-month period
d = % of PLWH who received specified services in 12-month period
Unmet need = [a X (1 − c)] + [b X (1 − d)]

Example: Unmet need in State X
In state X, there were 4,291 persons living with AIDS and 3,942 persons living with HIV. The proportion of persons living with AIDS who received primary medical care within the past 12 months was 62%. The proportion of persons living with HIV who received primary medical care within the past 12 months was 27%.
a = 4,291
b = 3,942
c = 62%, or 0.62
d = 27%, or 0.27

Unmet need
= [a X (1 − c)] + [b X (1 − d)]
= [4,291 X (1 − 0.62)] + [3,942 X (1 − 0.27)]
= [1,631 + 2,878]
= 4,509 persons

Summary of Recommended Analyses for Question 2

The analyses summarized here will guide you in analyzing, interpreting, and presenting data describing the patterns of service utilization of HIV-infected persons in your state or EMA. Depending on your local needs, you may choose to perform analyses in addition to those recommended below:

• HIV primary medical care, stratified by sex, race/ethnicity, age group, exposure categories, TB status, and viral hepatitis (B and C)

• Support services, stratified by sex, race/ethnicity, and age group

• Number and characteristics of persons who know they are HIV-positive but who are not receiving HIV primary medical care

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