FAQs

Who provided the data for AIDSVu?

State- and county-level AIDSVu data are obtained from CDC’s national HIV surveillance programs and mortality data are obtained from CDC’s Division of HIV/AIDS Prevention (DHAP). Data are released to AIDSVu in accordance with each state’s HIV/AIDS data re-release agreement and are compiled by researchers at the Rollins School of Public Health at Emory University. ZIP Code, community area and ward, and census tract data are obtained directly from state and local health departments. All data received by Emory are anonymous, meaning that no names or other personally identifying information are provided. Strict rules are applied to the mapping process to protect the privacy of those living with HIV.

Please see the PrEP Data section for further details on its data source.

Why does the map differ between the rate and number of cases?

The scales in the legends for rates and number of cases for individual states, counties, and city-level data differ because the rate (usually expressed as the number of cases per 100,000 people in the population) is an expression of the relative concentration of people in an area (state, county, ZIP Code, community area, ward, or census tract) living with an HIV diagnosis. This differs from the number of cases, which is the actual number of people living with an HIV diagnosis. The rate can be useful for comparing the severity of the HIV epidemic in areas with different population sizes – for example, in a densely populated area and in a more sparsely populated one. The number of cases can identify areas where the greatest or fewest number of individuals living with an HIV diagnosis reside.

For example, in a county with fewer people but with a relatively large number of people living with an HIV diagnosis, the county may be shaded a dark red when viewing the prevalence rate. However, the same county may not appear dark red when viewing the map by the total number of cases because the county has a smaller number of cases compared with other counties.

How does AIDSVu differ from maps provided by the CDC?

Both AIDSVu and the CDC maps are built using the same data from CDC surveillance programs. However, AIDSVu also displays city-level data (ZIP Code, community area, ward, and census tract) on HIV prevalence and new diagnoses, which the CDC does not currently publish. CDC maps also offer some content that AIDSVu does not, including data on other infections, such as acute viral hepatitis and other sexually transmitted infections.

How does AIDSVu differ from other maps produced from some states?

All state- and county-level HIV surveillance data for AIDSVu were obtained from CDC’s national HIV surveillance database housed in the Division of HIV/AIDS Prevention’s HIV Incidence and Case Surveillance Branch. Data released from CDC may differ from data released by individual states because the data were analyzed differently, or because they are from different time periods. These differences can produce slightly different numbers that are released at the national vs. state or local levels.

What is the source of the community area and ward data?

The community area and ward data on AIDSVu were provided directly by state, county, and city health departments, depending on the entity responsible for HIV surveillance in that jurisdiction. Each health department defined the geographic area in their jurisdiction for which they desired to display data on AIDSVu. Maps are shown at the community area-level for Chicago, and ward-level for Washington, D.C.

What is the source of the census tract data?

The census tract level data on AIDSVu for Chicago, Philadelphia, and Washington, D.C. are provided directly by state or city health departments, depending on the entity responsible for HIV surveillance in each jurisdiction. Census tracts are small, relatively permanent statistical subdivisions of a county; they usually have between 2,500 and 8,000 persons and, when first delineated, were designed to be homogeneous to the population characteristics, economic status, and living conditions.

Census tract boundaries are delineated with the intention of being maintained over a long time so that statistical comparisons can be made from census to census. However, physical changes in street patterns caused by highway construction, new development, etc., may require occasional revisions; census tracts are occasionally split due to large population growth, or combined as a result of substantial population decline.

How do the numbers on AIDSVu compare to national statistics?

CDC estimates that 1.1 million people in the U.S. are living with HIV. These national statistics count both people who have been diagnosed with HIV (i.e., who have had a positive test for HIV) and an estimate of other people who are living with HIV but who have not been diagnosed. CDC estimates that one in seven people in the United States who are living with HIV don’t know it. The state- and county-level data on AIDSVu only include people who have been diagnosed with HIV. Nationally, CDC estimates that nearly one quarter of all HIV infections are diagnosed late, meaning individuals were diagnosed after the disease had already progressed to AIDS. People with late HIV diagnoses miss opportunities to start treatment earlier, which can lead to better health outcomes.

Each individual city and state profile on AIDSVu provides additional information, such as racial disparity in HIV diagnoses, new and late HIV diagnoses, mode of HIV transmission, federal grant funding for HIV/AIDS, state progress toward prevention goals, and other sexually transmitted disease rates.

How did AIDSVu select the cities displaying ZIP Code, census tract, and community area/ward data?

AIDSVu invited cities with the highest rates of HIV diagnoses, according to CDC’s recent HIV surveillance report, to provide data. AIDSVu’s resources and capacity determine the number of new cities invited each year. Unfortunately, at this time, AIDSVu is unable to map all U.S. cities because of the possibility of low case counts or small population sizes, leading to data suppression issues.

Can you provide a ranked list of counties with the highest HIV rates in the U.S.?

Because the data for several counties are suppressed or not available, AIDSVu is unable to provide a ranking of U.S. counties. To determine counties with the highest rates or case counts, it is possible to sort the county-level downloadable data set from highest to lowest.

Is AIDSVu based on where people lived at the time of HIV diagnosis or where they live now?

Prevalence data is based on most recent known address and new diagnoses data is based on residence at time of diagnosis.

How often do you intend to update AIDSVu? Are you planning to add new features to AIDSVu?

AIDSVu is updated on an ongoing basis with new data and additional information as it becomes available. For details about how often different data elements will be updated, see the Data Methods page on www.AIDSVu.org. You can also sign up on the AIDSVu website to receive email notifications when new features or data are added to the site.

Where does AIDSVu get the statistics and findings released on infographics and awareness day pages?

Unless otherwise noted, AIDSVu receives all statistics and findings from CDC. This information is carefully reviewed and confirmed by the AIDSVu team prior to their release, and in the event of any discrepancies, AIDSVu contacts CDC to confirm the data source and methodology.

Why are the data not from this year?

Each year, AIDSVu publishes the latest HIV data available from CDC and 41 local health departments. The state-, county-, and city-level new diagnoses data have about a one-year compilation period to allow for reporting time, data corrections, resolution of duplicate diagnoses across states, analyses, and report preparation. New diagnoses data offer a look at recent changes in the epidemic.

The state-, county and city-level prevalence data have about an 18-month compilation period for the same reasons, as well as the integration of the data on deaths of people with an HIV diagnosis (mortality). Prevalence data help us to understand the overall burden of HIV in the U.S.

City-level data are available more quickly than the state- and county-level data due to the different data sources and their independent timelines.

Why aren’t some data shown?

To protect the privacy of those living with diagnosed HIV, AIDSVu does not display data where the number of people living with diagnosed HIV is less than five and/or the number of people in the area is less than 100 for states/counties and less than 500 for ZIP Codes/census tracts.

Areas appear white when one or both conditions are met. The light shade of gray indicates an area where data are not shown because the data are either not available for the area or were not released to AIDSVu.

How does AIDSVu account for prison and jail data and what do the correctional disclaimers on the map mean?

Some counties have state or federal correctional facilities where inmates may have been diagnosed with HIV. Because the data displayed on AIDSVu count these inmates, and because the “persons living with diagnosed HIV” are analyzed by “most recent known address” and “persons newly diagnosed with HIV” data on AIDSVu are analyzed by “residence at HIV diagnosis,” inmates living in or diagnosed at correctional facilities are counted as cases in the county where the facility is located. This may inflate the rate and case count of persons living with an HIV diagnosis in the county and may not represent HIV infection in the county’s community as a whole. In cases where this inflation may occur, a note is included in the pop-up window for the relevant geographic area. See the Data Methods page on AIDSVu.org for additional information about how the inclusion of these correctional notes was determined.

Some AIDSVu cities have excluded case counts where the HIV diagnosis may have occurred in a correctional facility. Correctional disclaimers on AIDSVu’s city maps are on a case-by-case basis. To see cities that display correctional disclaimers, see the Data Methods page.

How are transgender cases defined on AIDSVu?

According to CDC, transgender is defined as people whose gender identity or expression is different from their sex assigned at birth. This year AIDSVu is including data provided by 31 city jurisdictions from the electronic HIV/AIDS Reporting System (eHARS) on individuals who are transgender women (Male-to-Female) and transgender men (Female-to-Male). The data provided are the estimated number of people living with diagnosed HIV and had a reported difference between birth sex and current gender.

What is Pre-Exposure Prophylaxis (PrEP)?

Pre-exposure prophylaxis (PrEP) is when people at high risk for HIV take HIV medicine daily to lower their chances of getting infected with HIV. When taken every day, PrEP can provide a high level of protection against HIV and is even more effective when it is combined with condoms and other prevention methods. When someone is exposed to HIV, PrEP can help prevent the virus from establishing a permanent infection in the body. The U.S. Food and Drug Administration (FDA) approved the HIV medicine tenofovir [TDF]/emtricitabine [FTC] (TDF/FTC) for daily use as PrEP in 2012. Visit CDC’s “PrEP” page to learn more.

What data do the AIDSVu PrEP maps visualize?

AIDSVu data represent the number of people who had at least one day of prescribed TDF/FTC for PrEP in a calendar year from 2012 to 2016. These individuals are referred to as “PrEP users”. The PrEP data are presented at the state level and can be viewed as number of PrEP users and rate of PrEP use, expressed as the number of PrEP users per 100,000 people in the population. The PrEP data can be broken down by age (year of birth, displayed as 24 and under, 25 to 34, 35 to 44, 45 to 54, 55+) and sex (sex at birth, displayed as male or female). Data on PrEP use can be viewed alongside social determinants of health, such as poverty, high school education, median household income, income inequality, and people without health insurance. Please see the Data Methods page for additional information.

What do the PrEP data reveal?

The number of PrEP users has increased by 880 percent since 2012, an average 73 percent increase year over year from 2012 to 2016.

• In 2016, there were 77,120 PrEP users in the U.S., up from 8,768 PrEP users in 2012.
  Men and 25- to 44-year olds were more likely to be PrEP users.
• 93 percent of all PrEP users in 2016 were male, which is about 14 times higher than the number of female PrEP users. Men accounted for 81 percent of all new HIV diagnoses in 2016.
• In 2016, 64 percent of all PrEP users were 25- to 44-years old. This age group represented more than half (54 percent) of all new HIV diagnoses during the same period.
• Nearly 50% of PrEP users in 2016 were located in just five states: New York, California, Florida, Texas, and Illinois.
• When looking at the rate of PrEP use—the number of people in a state using PrEP per 100,000 population—the five states with the highest rates in 2016 were New York, Massachusetts, Rhode Island, Washington, and Illinois.
• In 2016, the Northeast region of the U.S. had approximately twice the rate of PrEP use (47.4 PrEP users per 100,000 population) compared to the West (28.1 PrEP users per 100,000 population), the South (22.6 PrEP users per 100,000 population), and the Midwest (23.5 PrEP users per 100,000 population) regions.
• The South is the region with the highest number of new HIV diagnoses in the U.S. but has disproportionately fewer people using PrEP.
• The Southern U.S. accounted for only 30 percent (23,091 persons) of all PrEP users in 2016. The region represented more than half (52 percent) of all new HIV diagnoses in 2016.

Why were these data released on AIDSVu?

AIDSVu’s mission is to make HIV-related data widely available, easily accessible, and locally relevant to inform public health decision making. Increasing the use of PrEP is a core component of Getting to Zero campaigns in cities and states across the U.S. and is one of four key focus areas in the National HIV/AIDS Strategy. By releasing the first-ever state-level data and interactive maps on PrEP users across the U.S., AIDSVu is continuing its commitment to provide public health officials, policymakers, healthcare professionals, researchers, and community leaders with a more comprehensive view of the HIV epidemic at the local, state, and national levels.

What other PrEP-related resources does AIDSVu have?

In addition to the release of the PrEP data and maps, AIDSVu has also launched a new page—Deeper Look: PrEP—dedicated to promoting public awareness about PrEP, visualizing key facts about PrEP, and advancing education around PrEP. The page features insights from the data, infographics, and guest blogs and will be updated on an ongoing basis. Additionally, AIDSVu provides downloadable PrEP maps and datasets at the state-level and PrEP datasets at the ZIP3-level for researchers and health departments to utilize in their own analyses. ZIP3 refers to the three digit ZIP code prefix assigned by the U.S. Postal Service; there are approximately 930 ZIP3’s in the U.S.
AIDSVu is also an inaugural user of PrEP Locator, a national directory of public and private practice providers of PrEP across the U.S. AIDSVu users can find local PrEP providers near them with this valuable tool. The PrEP Locator project is led by Dr. Aaron Siegler at Emory University’s Rollins School of Public Health. The development and maintenance of the PrEP Locator is funded by the M•A•C AIDS Fund.

What is the source of the PrEP data?

Data on PrEP users displayed on AIDSVu were obtained from Source Healthcare Analytics, LLC (SHA) with the support of Gilead Sciences, Inc., and compiled by researchers at the Rollins School of Public Health at Emory University. SHA provided Gilead with national, electronic, patient-level prescription data from an overall sample that represents over 54,000 pharmacies, 1,500 hospitals, 800 outpatient facilities, and 80,000 physician practices. This is an open sample of commercially available data, which excludes entities that do not make their data available, such as closed healthcare systems. All patient-level prescription data were de-identified and linked to confirmatory data from a de-identified medical insurance claims database. Gilead then utilized a validated algorithm1 to exclude prescriptions for TDF/FTC that were made for other known indications, such as HIV treatment, post-exposure prophylaxis, and chronic hepatitis B management. Through a data sharing agreement between SHA, Gilead, and Emory University, Gilead shared aggregate datasets at the state- and ZIP3-level with Emory. Emory then applied data suppression rules and developed the publicly available maps and data sets for AIDSVu. Please see the Data Methods page for additional information.

What are the limitations of the PrEP data?

There is currently no single data source that includes data on all unique users of PrEP across the U.S. Source Healthcare Analytics (SHA) collects data from over 54,000 pharmacies, 1,500 hospitals, 800 outpatient facilities, and 80,000 physician practices across the U.S. SHA’s dataset contains prescription, medical, and hospital claims data for all payment types, including commercial plans, Medicare Part D, cash, assistance programs, and Medicaid. From this overall sample, AIDSVu presents a subset of data comprising prescriptions for TDF/FTC for PrEP.

SHA’s dataset is an open sample of commercially available data, which excludes entities that do not make their data available, such as closed healthcare systems. As a result, the data displayed on AIDSVu underestimates the total number of PrEP users in the U.S.
Medical procedure and diagnosis code data were not available for 28% of the SHA records. These procedure and diagnosis codes are required to determine whether an individual TDF/FTC prescription was made for PrEP, for treatment of HIV or Hepatitis B infection, or was used for post-exposure prophylaxis (PEP). These 28% of records were assumed to not represent TDF/FTC prescriptions for PrEP, although some proportion of these records were likely, in reality, PrEP prescriptions. This is a further source of underestimation of PrEP users.
Data are derived from prescriptions to unique people; however, those who fill a prescription may not use it. Additionally, the overall total population may be fewer than the sum of age group total population for a given year because people may be counted twice if they switch age groups within a certain year (i.e. if a person turns 35 in 2016 then the person is counted in both the 25-34 and 35-44 age groups in 2016).

Who is Source Healthcare Analytics, LLC?

Source Healthcare Analytics, LLC is a leading provider of high-value data, analytics, technology solutions and actionable insights for healthcare and life sciences manufacturers, payers, and providers. For more information, visit www.symphonyhealth.com.

Why do the PrEP data not include race/ethnicity?

State-level PrEP data by race/ethnicity are currently not available in the dataset from Source Healthcare Analytics. AIDSVu recognizes the significance of these data in helping to better understand and highlight racial/ethnic disparities in PrEP access and uptake. AIDSVu will explore the possibility of obtaining and mapping PrEP data by race/ethnicity in the future.
A poster presentation by Mera et al. in July 2017 at the 9th International AIDS Society Conference on HIV Science (IAS) included data on the race/ethnicity of individuals in the U.S. who started PrEP from January 2012 through September 2016. Since data on race/ethnicity are not routinely included in pharmacy records, the data presented by Mera et al. represented about 40% of unique individuals who started PrEP during that time period. The analysis revealed that 73 percent of people that started PrEP from January 2012 through September 2016 were white, 13 percent were Hispanic/Latino, 10 percent were African American, and 4 percent were Asian.

How are these data different from other data on PrEP that have been shared publicly?

Data displayed on AIDSVu represent the number of unique persons, by state, who had at least one day in a calendar year of prescribed TDF/FTC for PrEP. TDF/FTC is the only medicine currently approved by the U.S. Food and Drug Administration (FDA) for PrEP use. On AIDSVu, these individuals are referred to as “PrEP users”. These data are raw—not projected—and are subject to the limitations of the dataset as described above and on the Data Methods page; therefore, these data underestimate the total number of PrEP users in the U.S.
There is currently no single data source that includes data on all unique users of PrEP across the U.S. Other publicly shared data on PrEP use have used estimates from multiple data sources to project for the total number of unique persons using TDF/FTC for PrEP in the U.S. at a given point in time. This method, however, does not provide state-level estimates. Additionally, data has also been shared publicly on the cumulative number of unique persons who have initiated TDF/FTC for PrEP since 2012, also referred to as “PrEP starts”.

How often will new PrEP data be released?

AIDSVu plans to release updated PrEP maps and data on an annual basis and intends to release PrEP data from 2017 as soon as they are available. Moving forward, AIDSVu will explore the feasibility of providing more frequent data updates, as well as mapping data at finer geographic levels. You can sign up on the AIDSVu website to receive email notifications when new features or data are added to the site.

What is Powered By AIDSVu?

Powered By AIDSVu projects use the existing AIDSVu infrastructure to expand to other projects that visualize complex information to inform public health decision making. Powered By AIDSVu projects incorporate collaborative content and programs from additional data sources and partners. The inaugural Powered By AIDSVu project, HIVContinuum.org, was released in February 2015 and maps the continuum of care across the five stages of the HIV treatment cascade. A new Powered By AIDSVu project, HepVu.org,
was released in April 2017 and visualizes the first standardized state-level estimates of people with Hepatitis C infection across the United States.

What does HIVContinuum show?

HIVContinuum.org displays data and maps illustrating the HIV care continuum in eight large cities in the U.S. – Atlanta, Chicago, Dallas, New Orleans, New York, Philadelphia, San Francisco, and Washington, D.C and two states – Illinois and Texas. The site includes data for persons newly diagnosed with HIV between 2010 and 2014 and visualizes new HIV diagnosis, late HIV diagnosis, linkage to HIV care, engagement in HIV care, and suppressed HIV Virus (engaged and diagnosed).

What does HepVu show?

HepVu.org displays interactive maps that illustrate Hepatitis C chronic infection estimates, antibody prevalence estimates, and mortality data at the state-level. Data can be visualized by rates and cases, and stratified by sex, race, and mortality data can be stratified by age. The state-level estimates on HepVu were derived from an Emory University Coalition for Applied Modeling for Prevention (CAMP) modeling project, “Estimates of state-level chronic hepatitis C virus infection, stratified by race and sex, United States, 2010,” which was published in the peer-reviewed journal BMC Infectious Diseases in May 2018.