Number of people living with HIV who know their status

How to use this indicator

This indicator aligns with the first of the United Nations’ 95-95-95 targets. By 2030, UN has established the revised target that 95% of people living with HIV know their HIV status. It is essential for people living with HIV to be aware of their HIV status so that they can protect themselves and others and access treatment. This indicator is connected to HIV testing because access to testing services is a mechanism by which people living with HIV become aware of their status, receive verified diagnosis, and are linked to appropriate care and treatment services. (See the HIV testing indicator here.) Around 30 percent of people living with HIV are unaware of their serostatus. Testing is essential to ensure these people receive counselling and are linked to appropriate HIV and other clinical support services. Laboratory services must also be coordinated to ensure delivery of correct results. Knowing one’s HIV status affects uptake of and compliance with antiretroviral therapies. Community interventions that involve HIV counseling and testing that are integrated into HIV-prevention packages have been shown to increase knowledge of HIV status. This indicator allows community-based programs to understand the epidemic in their communities and locate people living with HIV to provide with, or refer to, care and social services. 

Numerator

Number of adults and children living with HIV who know their HIV status

Unit of measure

Number

Calculation

Sum results across reporting period

Method of measurement

At the community level, this indicator can be determined by asking beneficiaries if they know their HIV serostatus. Similar to the structure of a population-based survey, the eligible people in the household are asked whether they have been tested for HIV and (if they respond, yes) the results of their last test. The indicator would be based on the number who responded that they had been diagnosed with HIV when asked during the reporting period.

People who have never been tested for HIV can be presumed not to know their HIV status. This indicator should reveal the number of people living with HIV who have ever been tested and received their results. This indicator should not be confused with HIV diagnosis, because people may have self-tested HIV-positive.

Although questions related to HIV status are typically asked of people of reproductive age (15–49), community workers should abide by national disclosure guidelines when discussing HIV status directly with children below the age of 15. If children are younger than nine years old and HIV-positive, caregivers rarely inform them of their own HIV serostatus. Disclosure of a child’s HIV status to the child has been shown to lead to positive health outcomes for the child, such as better treatment adherence and slower disease progression. It is recommended that all adolescents be made aware of their status and that this policy be considered for school-age children as well. Community workers should engage with care when discussing HIV status with those under the age of 18 and should refer to the caregiver for information in private if the child is unaware. It is important to prepare and counsel caregivers for the emotional impact of disclosure.

A mandate to do no harm must be the absolute priority whenever community programs engage in data collection and reporting of HIV status. All data must be managed with confidentiality to ensure that the identities of people living with HIV (and their key population status as applicable) are protected, to prevent stigma and discrimination. Confidentiality must be maintained, especially when mapping those living with HIV. Codes and unique identifiers are recommended to protect identities, and to account for retesting and avoid double counting if electronic systems are available. Community workers should engage with utmost caution in collecting, managing, and reporting this information and should ensure files remain confidential.

Data source

This indicator is tracked by vulnerable children programs in service provision, comprehensive family care, vulnerability assessment, risk assessment, enrollment, and follow-up forms. Community workers gather information on the HIV status of both children and the adults in the household. Key population programs typically determine the HIV status of participants in their behavior change communication and outreach activities. Other HIV programs collect the information necessary to profile members of the household through community family folders.

Disaggregation

• Age (5–9 years, 10–14 years, and 15–19 years for children; 20–24 years, 25–49 years, and 50+ years for adults)
• Sex
• Pregnancy/lactation status
• Key population type (sex workers, transgender people, men who have sex with men, people who inject drugs)

Data quality considerations

The overall number reported for this indicator should be equal to the sum of the numbers of people in each disaggregation type. Only one type of age disaggregation should be used throughout, and overlap should be avoided.

Reporting frequency

Community workers should collect this information regularly but should monitor progress monthly with support from their supervisors. The indicator should be reported on a semiannual basis.

Data element

HIV status

Category

Vulnerable Children, Key Populations, Prevention of Mother-to-Child Transmission, Home-Based Care

References

The United States President’s Emergency Plan for AIDS Relief (PEPFAR). (2018). Monitoring, evaluation, and reporting (MER 2.0) indicator reference guide updated release (Version 2.2). Washington, DC: PEPFAR. Retrieved from https://www.pepfar.gov/documents/organization/274919.pdf

Biadgilign, S., Deribew, A., Amberbir, A., Escudero, H. R., & Deribe, K. (2011). Factors associated with HIV/AIDS diagnostic disclosure to HIV infected children receiving HAART: A multi-center study in addis Ababa, Ethiopia. Retrieved from  http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017572

World Health Organization (2017). HIV testing services. Retrieved from http://www.who.int/hiv/topics/vct/about/en/

Shanaube, K., Schaap, A., Chaila, M., Floyd, S., Mackworth-Young, C., Hoddinott, G., . . . Ayles, H. (2017). Community intervention improves knowledge of HIV status of adolescents in Zambia: Findings from HPTN 071-PopART for youth study. AIDS, 31(Suppl 3), S221–S232. Retrieved from https://journals.lww.com/aidsonline/Fulltext/2017/07013/Community_intervention_improves_knowledge_of_HIV.5.aspx