FAQs

Why are the data not from this year?

Each year, AIDSVu publishes the latest HIV data available from CDC and nearly 40 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.

Why do the maps look different compared to last year?

The state- and county-level HIV surveillance data on AIDSVu are obtained from the CDC. Each state provides their HIV surveillance data to the CDC, and indicates, through a data re-release agreement, if they want their data to be released to the public, and if so, the criteria that must be met in order for the CDC to release their data publicly (i.e., the data suppression threshold). For example, a state may not allow the CDC to release their data to the public if a county within the state (or the whole state at the state-level) has a total population less than a specific threshold (50,000, 500,000, etc.). Data re-release agreements between the states and CDC were updated this year. Several states requested changes in the data suppression thresholds in their data re-release agreements, which is why the maps and the data look different from last year.

What is the difference between data not shown, data not released to AIDSVu, and no cases reported?

The white denotes data not shown to protect privacy because of a small number of cases and/or a small population. This means the number of cases is between 1-4 or the population is less than 100 so the county/state is suppressed to protect the privacy of those individuals.

The lighter grey denotes zero cases reported. This means there were zero people either living with HIV or newly diagnosed with HIV reported to the CDC.

The darker grey denotes data not released to AIDSVu. This means the state has chosen to not allow the CDC to release their data to the public if a county within the state (or the whole state at the state-level) has a total population less than a specific threshold (50,000, 500,000, etc). Each state fills out a data re-release agreement with the CDC where they indicate what level of suppression they would like applied to their state.

These suppression rules apply at both the state and county-level. They also differ depending on the level of stratification. See the data methods for more details.

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. In 2019, AIDSVu included data provided by 34 city jurisdictions from the electronic HIV/AIDS Reporting System (eHARS) on individuals who are transgender women (Male-to-Female) and/or 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 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 2018. These individuals are referred to as “PrEP users”. AIDSVu’s PrEP data represents a conservative, or minimum, number of PrEP users in each state in the U.S. by year. The actual number of PrEP users is higher.

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 increased by 29% from 2017 to 2018, continuing a trend of consistent growth in PrEP use since 2012.

• The rate of PrEP use increased from 3.3 PrEP users per 100,000 population in 2012 to 47.9 PrEP users per 100,000 population in 2018, a 49% average annual increase from 2012 to 2018.
• In 2018, there were at least 132,340 PrEP users in the U.S. The PrEP data displayed on AIDSVu represent a conservative, or minimum, number of PrEP users in the U.S. by year.
• Men and 25- to 44-year olds were more likely to be PrEP users.
• Men accounted for 81% of all new HIV diagnoses in 2017.
• From 2012 to 2018, there was a 57% average annual increase in the rate of PrEP use among males compared to a 7% annual increase in the rate of PrEP use among females.
• In 2018, 63% of all PrEP users were 25- to 44-years old. This age group represented more than half (54%) of all new HIV diagnoses in 2017.
• The top five states with the highest rates of PrEP use in 2018 were Washington, D.C., New York, Massachusetts, Rhode Island, and Washington.
• In 2018, the Northeast region of the U.S. had approximately twice the rate of PrEP use (80.3 PrEP users per 100,000 population) compared to the West (43.4) PrEP users per 100,000 population), the South (40.9 PrEP users per 100,000 population), and the Midwest (40.8 PrEP users per 100,000 population) regions.
• Nearly 50% of PrEP users in 2017 were located in just five states: New York, California, Florida, Texas, and Illinois. These states account for 34% of the U.S. population and represented 42% of all people newly diagnosed with HIV in 2017.
• The South has 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 32% of all PrEP users in 2018 but the region represented more than half (52%) of all new HIV diagnoses in 2017.
• The PrEP-to-Need Ratio (PnR)—the ratio of the number of PrEP users to the number of people newly diagnosed with HIV—serves as a measurement for whether PrEP use appropriately reflects the need for HIV prevention in a geographic region or demographic subgroup.
• Overall, the annual PnR increased from 0.2 in 2012 to 3.4 in 2018. In other words, in 2018, for every one person newly diagnosed with HIV, there were 3.4 HIV-negative persons using PrEP.
• In 2018, the PnR for women (1.2) was less than a third of the PnR for men (4.0), indicating an inequity in PrEP use for women relative to their need.
• The Southern U.S. represented half of new HIV diagnoses in 2017 (52%) but had the lowest PnR (2.1) in 2018 among all regions. In contrast, the Northeast region had the highest PnR (6.4) in 2017.
• While the annual PnR increased for all age groups from 2012 to 2018, those aged 24 years and younger had the lowest PnR (2.1) and those aged 35 to 44 years had the highest PnR (4.2).
• To learn more about key trends in the use of PrEP from 2012 to 2017, please see Sullivan et al.’s recent article in Annals of Epidemiology titled “Trends in the use of oral emtricitabine/tenofovir disoproxil fumarate for pre-exposure prophylaxis against HIV infection, United States, 2012-2017.”

For the purposes of this analysis, Washington, D.C. is treated as a state.

Why were these data released on AIDSVu, and why does data on PrEP use matter?

It is said that things that are not measured do not change. 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. AIDSVu’s state-level PrEP data help health departments, elected officials, medical professionals, and community leaders better understand and visualize trends in PrEP use over time, so they can develop programs and policies to increase PrEP awareness and access where it is needed most. By releasing the first-ever state-level data and interactive maps on PrEP users across the U.S., and adding new PrEP data each year, 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.

How can the PrEP data be utilized on AIDSVu?

State-level PrEP data on AIDSVu can be viewed alongside social determinants of health and other HIV data, such as new diagnoses, prevalence, and mortality. Additionally, AIDSVu provides downloadable PrEP datasets at the state- and ZIP3-level for researchers and health departments to utilize in their own analyses. Check the AIDSVu blog for recent examples of PrEP data utilization.

AIDSVu also features a PrEP Locator, a national directory of providers of PrEP in the U.S. developed by Emory University’s Rollins School of Public Health with support from M•A•C AIDS Fund. The PrEP Locator is now managed by CDC’s National Prevention Information Network (NPIN). PrEP provider locations can be overlaid on top of AIDSVu’s PrEP use maps.

What other PrEP-related resources does AIDSVu have?

In addition to the PrEP data and maps, AIDSVu also features a Deeper Look: PrEP page, which is 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 blogs by HIV experts and is 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 also features a 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 was developed by Emory University’s Rollins School of Public Health with support from M•A•C AIDS Fund. The PrEP Locator is now managed by CDC’s National Prevention Information Network (NPIN).

What is the source of the PrEP data?

The release of the PrEP data on AIDSVu was made possible through a unique data sharing agreement that allowed this proprietary data to be shared publicly for the first time. The data were obtained from Symphony Health with the support of Gilead Sciences, Inc., and compiled by researchers at the Rollins School of Public Health at Emory University.

Symphony Health provided Gilead with national, electronic, patient-level prescription data from an overall sample that represents more than 54,000 pharmacies, 1,500 hospitals, 800 outpatient facilities, and 80,000 physician practices across the U.S. This is an open sample of commercially available data, which excludes entities that do not make their data available to Symphony Health, such as closed healthcare systems. The dataset contains prescription, medical, and hospital claims data for all payment types, including commercial plans, Medicare Part D, cash, assistance programs, and Medicaid.

All patient-level prescription data were de-identified and linked to confirmatory data from a de-identified medical insurance claims database. Gilead utilized a validated algorithm 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. Gilead then shared aggregate datasets at the state- and ZIP3-level with Emory. Finally, Emory applied data suppression rules and developed the publicly available maps and data sets for AIDSVu.

Please see the Data Methods page for additional information.

MacCannell T, Verma S, Shvachko V, Rawlings K, Mera R. Validation of a Truvada for PrEP Algorithm using an Electronic Medical Record. 8th IAS Conference on HIV Pathogenesis, Treatment & Prevention. Vancouver Canada July 2015.

Who is Symphony Health?

Symphony Health 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.

What are the limitations of the PrEP data?

The U.S. healthcare system is very fragmented, and that fragmentation carries over to the way that data is collected and shared across the healthcare system. There are a large number of public and private healthcare data collection systems in the U.S.; however, data do not flow among these entities in a cohesive or standardized way. Due to this fact, there is currently no single entity or data source that collects data on all users of PrEP across the U.S.

AIDSVu’s PrEP data represents a conservative, or minimum, number of PrEP users in each state in the U.S. by year. The actual number of PrEP users is higher. There are several key reasons for this:

1) AIDSVu’s PrEP dataset is derived from a single data source: Symphony Health. Symphony Health collects data from over 54,000 pharmacies, 1,500 hospitals, 800 outpatient facilities, and 80,000 physician practices across the U.S. However, the dataset does not contain all sources of TDF/FTC prescriptions in the U.S. For example, closed healthcare systems do not share their data with Symphony Health. Additionally, other entities may choose not to share their data with Symphony Health for their own reasons.
2) AIDSVu’s PrEP dataset also excludes TDF/FTC prescriptions that do not have sufficient medical procedure or diagnosis codes to confirm that the prescription was for PrEP and not for any other use, such as HIV treatment, chronic Hepatitis B treatment, or post-exposure prophylaxis. Due to the stringent criteria used to identify PrEP users, roughly 28% of patient records were removed from the AIDSVu dataset altogether because they did not have sufficient medical procedure and diagnosis code data available to confirm their use of TDF/FTC for PrEP, although some proportion of these records were likely, in reality, PrEP prescriptions.
3) AIDSVu’s PrEP dataset presents “raw” data, or in other words, data that have not been adjusted or projected in any way to account for known sources of undercounting or missing data.

Analyses of AIDSVu’s 2012-2017 PrEP data were recently published in Sullivan et al.’s article in Annals of Epidemiology titled “Trends in the use of oral emtricitabine/tenofovir disoproxil fumarate for pre-exposure prophylaxis against HIV infection, United States, 2012-2017.” In this paper, the researchers conducted a sensitivity analysis for the number of national PrEP users in 2017. The sensitivity analysis is a useful attempt to better understand the extent of undercounting in the AIDSVu PrEP dataset. The researchers varied plausible ranges of values for (1) the proportion of TDF/FTC prescriptions that are not captured in the Symphony Health database, and (2) the proportion of unclassified TDF/FTC monotherapy in the Symphony Health database that is used for PrEP. The sensitivity analysis estimated that the number of individuals using PrEP in 2017 ranged from 100,282 to 205,167, with a best estimate of 172,479.

What can the PrEP data on AIDSVu be used for?

The PrEP datasets on AIDSVu provide consistent, comparable, replicable numbers of annual PrEP users by state with known limitations that are described to the best extent possible. These data are well suited to be used for public health research and planning purposes. For example, these data can be used to:

• Monitor progress, trends, and disparities in PrEP use at the state-level and among specific age groups or sexes;
• Compare PrEP use among states and regions;
• Support research to investigate questions related to PrEP awareness, access, and use; and
• Inform public health planning.

Why do the PrEP data not include race/ethnicity?

AIDSVu recognizes the significance of better understanding and highlighting trends in racial/ethnic disparities in PrEP use. As a result, AIDSVu is actively working to publicly release PrEP use data by race/ethnicity at the state-level from Symphony Health in 2020.

In October 2018, CDC published an MMWR article on people prescribed PrEP in the U.S. from 2014 to 2016 and their demographic characteristics, including race/ethnicity. The researchers analyzed data from the IQVIA database—a different data source than that presented on AIDSVu—which represents approximately 92% of all prescriptions dispensed from retail pharmacies and 60%–86% dispensed from mail order outlets in the United States. Only 42% of PrEP users identified in the IQVIA database had race/ethnicity information available. The researchers found that among PrEP users with available race/ethnicity data: 68.7% were white, 11.2% were Black, 13.1% were Hispanic, and 4.5% were Asian. When stratified by sex, among female PrEP users with available race/ethnicity data: 48.3% were white, 25.9% were Black, and 17.5% were Hispanic.

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

AIDSVu’s PrEP data are not intended to be compared to any other publicly available data on PrEP use due to the significant differences in data sources and methodologies. 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. On AIDSVu, these individuals are referred to as “PrEP users”.

The dataset presents “raw” data, or in other words, data that have not been adjusted or projected in any way to account for known sources of undercounting or missing data. The data are subject to the limitations of the dataset as described above and on the Data Methods page; therefore, AIDSVu’s PrEP data is a conservative, or minimum, number of PrEP users in each state in the U.S. by year.

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 derived estimates from different data sources or from multiple data sources. 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 continually strives to increase the granularity of its publicly available data to support more-informed local public health decision making. To that end, AIDSVu plans to release updated PrEP maps and data on an annual basis. And in late 2019, AIDSVu intends to release county-level estimates of PrEP use from 2012 to 2018.

Additionally, AIDSVu has also made substantial progress on releasing PrEP use data by race/ethnicity at the state-level from Symphony Health and is working to release these data publicly in 2020. AIDSVu recognizes the significance of these data in helping to better understand and highlight racial/ethnic disparities in PrEP awareness, access, and use.

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 maps state-level Hepatitis C prevalence estimates obtained from the Emory University Coalition for Applied Modeling for Prevention (CAMP) project, including researchers from the University of Albany. This was a collaborative effort with researchers from the Centers for Disease Control and Prevention (CDC), and findings were published in the peer-reviewed Journal of the American Medical Association (JAMA) Network Open.

HepVu also maps Hepatitis C-related mortality data (2016) and three opioid-related indicators that, together with HepVu’s Hepatitis C data, help illustrate the relationship between the opioid crisis and viral hepatitis in the U.S. The opioid-related data on HepVu include:

• Opioid prescription rate (2017)
• Narcotic overdose mortality rate (2013-2016)
• Pain reliever misuse prevalence (2015-2016)

HepVu’s Hepatitis C data can be visualized by rates and cases, and alongside data comparison maps, including opioid-related indicators and social determinants of health – such as poverty, high school education, median household income, income inequality, and people without health insurance.

Why was AIDSVu developed?

AIDSVu was developed with the goal of making HIV data widely available, easily accessible, and locally relevant to inform public health decision making. AIDSVu’s state-, county-, and city- level data can help increase disease awareness and inform planning and decisions about the best use of HIV prevention, testing, and treatment resources. These data also underscore the importance of all individuals aged 13 to 64 being tested for HIV at least once in their lifetime, as recommended by the U.S. Centers for Disease Control and Prevention (CDC).

Who is AIDSVu intended for?

AIDSVu can be used by everyone. The site is intended to be a resource for public health officials, health care providers, researchers, policymakers, advocates, and the general public. The detailed, yet easily accessible, information on AIDSVu can help communities plan where HIV prevention, testing, and treatment services are needed most; provide important data and visuals for grants, policy reports, and advocacy efforts; and give health care providers and the general public a tool for better understanding how HIV impacts their communities.

Who created AIDSVu?

AIDSVu was developed by Emory University’s Rollins School of Public Health in partnership with Gilead Sciences, Inc. It is led by Dr. Patrick Sullivan, Professor of Epidemiology at Emory University.

Who helps to advise the AIDSVu project?

AIDSVu receives ongoing support and guidance from three groups consisting of key stakeholders and experts: the AIDSVu Advisory Committee, the AIDSVu Technical Advisory Group, and the AIDSVu Prevention and Treatment Advisory Committee. The individuals who participate in these groups are representatives of organizations such as the U.S. Department of Health and Human Services, the U.S. Centers for Disease Control and Prevention, the U.S. National Institutes of Health, the Kaiser Family Foundation, the National Association of State and Territorial AIDS Directors, national patient and community advocates, representatives from state and local health departments, and private industry.

What does AIDSVu’s interactive map show?

AIDSVu visualizes HIV prevalence data – the rates and numbers of persons living with an HIV diagnosis – in states and counties across the U.S. in 2016, and in multiple cities in 2017. The state and county maps also show new HIV diagnoses data – the rates and cases of new HIV diagnoses – from 2008 to 2017. The new HIV diagnoses in the cities show a cumulative 5-year case count from 2014 to 2018. The HIV mortality data – the rates and numbers of persons with HIV who died –are shown at the state-level for 2016. AIDSVu also shows PrEP utilization – the rates and numbers of persons using PrEP, or pre-exposure prophylaxis – in states, by year from 2012 to 2018.

Prevalence and new HIV diagnosis data are available at finer geographic levels, including community area- and census tract- levels for Chicago, census tract-level for Philadelphia, and ward- and census tract-levels for Washington, D.C.

AIDSVu data can be visualized by race/ethnicity, sex, age, and transmission category, and displays HIV data alongside various social determinants of health – such as poverty, high school education, median household income, income inequality, and people without health insurance. AIDSVu allows users to locate a place for HIV prevention, testing and care, and also includes NIH-funded HIV prevention, vaccine, and treatment trial locations.

AIDSVu also has local data pages with profiles for 36 U.S. cities, 48 counties with the highest burden of new HIV diagnoses that are prioritized for Phase 1 of Ending the HIV Epidemic: A Plan for America initiative, 50 states, DC, Puerto Rico, 4 regions, and the nation, offering easy-to-understand, printable snapshots that summarize the impact of HIV and other sexually transmitted diseases.

What does AIDSVu demonstrate about HIV/AIDS in America?

AIDSVu provides a visualization of the HIV epidemic across the United States. The interactive maps illustrate geographic variations in the HIV epidemic and reveal how the epidemic affects communities differently. This information is important for individuals to understand how HIV impacts their communities, and for health officials and policymakers to see where HIV prevention, testing, and care services are needed most.

How can I get AIDSVu maps and resources for my work?

AIDSVu has a map print functionality, allowing users to download and print custom views from the interactive map for use in grant proposals, presentations, manuscripts, and other materials. Additionally, the local statistics section allows users to download and print state- and city-specific data and fact sheets using a custom export function at the top right-hand side of the page.