The HIV/AIDS Epidemic in the United States: The Basics

3 years ago

Key Facts

• The first cases of what would later become known as AIDS were reported in the United States (U.S.) in June of 1981.¹ Today, there are more than 1.2 million people living with HIV in the U.S. and there are more than 35,000 new infections each year. ² More than 700,000 people in the U.S., have died from HIV-related illness.
• HIV continues to have a disproportionate impact on certain populations, particularly racial and ethnic minorities, gay and bisexual men and other men who have sex with men and transgender women.^3,4,5
• HIV testing is important for both treatment and prevention efforts. Yet, 13% of those with HIV are unaware they are infected.⁶
• Antiretroviral therapy (ART) has substantially reduced HIV-related morbidity and mortality, improved long-term outcomes for people with HIV and plays a key role in HIV prevention. Treatment guidelines recommend initiating treatment as soon as one is diagnosed with HIV.⁷ When an individual with HIV is on antiretroviral therapy and the level of HIV in their body is undetectable, “studies have shown [there is] no risk of transmission” through sex.⁸ Still, many people with HIV are not in care, on treatment, or virally suppressed.⁹
• Numerous federal and local government departments and agencies are involved in the domestic HIV/AIDS response, which together provide disease surveillance, prevention, care, support services, and health insurance coverage. Additionally, the private sector and community-based organizations, provide services for people with HIV and those at risk for HIV.

Box 1: Key Snapshot of the U.S. Epidemic Today

Number of new HIV infections (2019): 34,800 Number of people living with HIV: 1.2 million Percent of people with HIV who don’t know it: 13% Percent of people with HIV virally suppressed: 57%

Overview

• As people with HIV are living longer with the disease, new infections continue to occur, and diagnoses surpass deaths each year, more people are living with HIV than ever before.^10,11
• There have been some promising trends, as the number of new HIV infections declined 73% between 1984 and 2019 and 9% between 2015 and 2019. Still, 34,800 people were newly infected with HIV in the U.S. in 2019, and declines were not seen among all populations.¹²
• HIV-related mortality rates, which rose steadily through the 1980s and peaked in 1995, have declined significantly; the age-adjusted HIV death rate has dropped by nearly 10-fold since 1990 and by half since 2009.^13,14 This is largely due to ART, but also to decreasing HIV incidence. Still, more 1,740 people died with HIV/AIDS as the underlying cause of death in 2020.¹⁵ 
• HIV transmission patterns have shifted over time. In 2019, most newly diagnosed cases of HIV occurred through male-to-male sexual contact (66%).¹⁶ An additional 4% of diagnoses occurred among gay and bisexual men with a history of injection drug use.¹⁷ Diagnoses attributable to injection drug use alone have declined significantly over time and accounted for 7% of new diagnoses in 2019.^18,19 Transmission through heterosexual sex now accounts for more cases than at the beginning of the epidemic – 23% of new diagnoses in 2019 – but diagnoses attributable to heterosexual sex have declined 40% between 2008 and 2019, compared to an 11% decline among men who have sex with men.²⁰
• HIV testing is important for both treatment and prevention efforts and rapid testing is now much more widely available. Yet, as of 2019 13% of those with HIV are unaware they are infected.²¹ It is thought that 38% of all new HIV transmissions occur from those who are undiagnosed.²² Knowledge of HIV status is important because individuals with HIV can engage in care and treatment to achieve optimal health outcomes and can take steps to prevent transmission. Routine HIV testing is recommended for all people ages 13-64,²³ and several recent policies have expanded health insurance coverage of HIV testing.²⁴
• Current U.S. HIV treatment guidelines recommend initiating ART as soon as one is diagnosed with HIV,²⁵ and new research (including the Strategic Timing of Antiretroviral Treatment study or START) has underscored the importance of starting treatment early.²⁶ Engaging in treatment early and consistently affords individuals with HIV the best possible care outcomes and also has preventive benefits.
• Further, recent research has confirmed the preventive benefits of treatment; when an individual with HIV is consistently engaged with antiretroviral therapy and the level of HIV in their body is undetectable, there is effectively no risk of sexual transmission. ²⁷
• However, looking across the continuum from HIV diagnosis to viral suppression reveals missed opportunities for addressing the epidemic. According to the Centers for Disease Control and Prevention (CDC), while many people with HIV are diagnosed (87%), far fewer receive medical care (66%), and fewer still are virally suppressed (57%), though each of these shares has increased over time.²⁸ Viral suppression is greater among those who are in medical care.²⁹

Impact Across the Country

• Although HIV has been reported in all 50 states, the District of Columbia, and U.S. dependencies, the impact of the epidemic is not uniformly distributed.
• Ten states accounted for about two-thirds (65%) of HIV diagnoses among adults and adolescents in 2019 (Table 1).³⁰ Regionally, the South accounted for more than half of HIV diagnoses in 2019.³¹
• Rates of HIV diagnoses per 100,000 provide a different measure of the epidemic’s impact, since they reflect the concentration of diagnoses after accounting for differences in population size across states. The District of Columbia has the highest rate in the nation, compared to states, nearly 3 times the national rate (Table 1) and Georgia was the state with highest rate (27.6), twice that of the national rate.^32,33 Nine of the top 10 states by rate are in the South.³⁴
• New HIV diagnoses are concentrated primarily in large U.S. metropolitan areas (80% in 2019), with Miami, Orlando, and Atlanta topping the list of the areas most heavily burdened.³⁵

Table 1: Top Ten States/Areas by Number and Rate of New HIV Diagnoses (Adults and Adolescents), 2019
State	New HIV Diagnoses, Number (%)	State/Area	New HIV Diagnoses, Rate per 100,000
Florida	4,387 (12%)	District of Columbia	42.2
California	4,354 (12%)	Georgia	27.6
Texas	4,302 (12%)	Florida	23.7
Georgia	2,439 (7%)	Louisiana	22.8
New York	2,330 (6%)	Nevada	19.8
North Carolina	1,365 (4%)	Mississippi	19.2
Illinois	1,252 (3%)	Texas	18.2
New Jersey	1,057 (3%)	Maryland	18.0
Pennsylvania	989 (3%)	South Carolina	15.6
Ohio	980 (3%)	Alabama	15.5
Subtotal	23,446 (65%)	—	—
U.S. Total	36,337 (100%)	U.S. Rate	13.2
SOURCE: CDC. HIV Surveillance Report, Diagnoses of HIV Infection in the United States and Dependent Areas, 2019; vol. 32. http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. May 2021.

Impact on Communities of Color

• Racial and ethnic minorities have been disproportionately affected by HIV/AIDS since the beginning of the epidemic, and represent the majority of new HIV diagnoses, people living with HIV disease, and deaths among people with HIV.^36,37
• Black and Latino people account for a disproportionate share of new HIV diagnoses, relative to their size in the U.S. population (see Figure 1).^38,39 Black people also account for more people living with HIV than any other racial group – an estimated 479,300 (40%) of the 1.2 million people living with HIV in the U.S. are black.⁴⁰
• Black people also have the highest rate of new HIV diagnoses, followed by Latino people – in 2019, the rate of new HIV diagnoses per 100,000 for Black people (45.0) was about 8 times that of white people (5.3); Latino people (21.5) had a rate 4 times that of white people.⁴¹
• Black people accounted for close to half (43%) of deaths among people with an HIV diagnosis in 2019.^42,43
• Survival after an AIDS diagnosis is lower for Black people than for most other racial/ethnic groups, and Black people have had the highest age-adjusted death rate due to HIV disease throughout most of the epidemic.⁴⁴ HIV ranks higher as a cause of death for Black and Latino people, compared with White people.⁴⁵ Further, HIV was the 6th leading cause of death for Black people ages 25-34 in 2019.⁴⁶

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Impact on Women

• Nearly 264,500 women are living with HIV in the U.S., accounting for about 22% all people with HIV.⁴⁷
• Between 2015 and 2019, HIV incidence among women remained stable, while it decreased among men.⁴⁸
• Women of color are particularly affected, and in 2019, Black women accounted for over half (55%) of new HIV diagnoses among women; white women accounted for 22% and Latina women accounted for 18%.⁴⁹

Impact on Young People

• Teens and young adults continue to be at risk, with those under 35 accounting for 57% of new HIV diagnoses in 2019 (those ages 13-24 accounted for 21% and those ages 25-34 accounted for 36%).⁵⁰ Most young people are infected sexually.⁵¹
• Among young people, gay and bisexual men and minorities have been particularly affected.⁵²
• Perinatal HIV transmission, from an HIV-infected mother to her baby, has declined significantly in the U.S., largely due to increased testing efforts among pregnant women and ART which can prevent mother-to-child transmission.^53,54,55
• A recent survey of young adults (18-30) found that HIV remains a concern for young people, especially for young people of color.⁵⁶

Impact on Gay and Bisexual Men

• While estimates show that gay and bisexual men comprise only about 2% of the U.S. population, male-to-male sexual contact accounts for most new HIV infections (66% in 2019, with an additional 4% occurring in gay and bisexual men with a history of injection drug use) and most people living with HIV (58% in 2019, with an additional 5% occurring in gay and bisexual men with a history of injection drug use).⁵⁷
• Annual new infections among gay and bisexual men declined overall between 2015 and 2019 but remained stable among Black and Latino gay and bisexual men.⁵⁸
• Blacks gay and bisexual men accounted for the largest number of new diagnoses (9,420) among this group in 2019, followed by Latino gay and bisexual men (8,007).⁵⁹ Additionally, according to a recent study, Black gay and bisexual men were found to be at a much higher risk of being diagnosed with HIV during their lifetimes compared with Latino and white gay and bisexual men.⁶⁰ Young Black gay and bisexual men are at particular risk – Black gay and bisexual men ages 20-29 accounted for 51% of new diagnoses among that age group and 13% of all diagnoses.⁶¹

The U.S. Government Response

• In FY 2019, U.S. federal funding to combat HIV totaled $36.8 billion, of which $29.8 billion was for domestic HIV efforts; of the funds dedicated to the domestic epidemic, the largest share ($23.1 billion) was for care, most of which was for the Medicaid and Medicare Programs. Three million dollars ($3.1) was for cash and housing assistance, $2.6 billion for research, and $0.98 for prevention.⁶²
• In 2019, the Trump Administration launched the “Ending the HIV Epidemic Initiative: A Plan for America” (EHE) is a federal effort to reduce new HIV infections in the United States by 75% in five years and by 90% in ten years and includes four “pillars”: diagnose, treat, prevent and respond. The initiative was built on efforts made by the Obama Administration and continues under the Biden Administration. It targets the regions hardest hit by the HIV epidemic, including 48 counties with the highest number of diagnoses, San Juan, Puerto Rico, Washington D.C, and 7 states with a substantial rural burden. It has also been accompanied by an infusion of federal funding, marking the first significant increases for programs in many years.  In FY22 EHE funding totaled $473.25 million.⁶³
• Numerous federal departments and agencies are involved in the domestic HIV/AIDS response and key government programs that provide health insurance coverage, care, and support to people with HIV in the U.S. include Medicaid, Medicare, the Ryan White HIV/AIDS Program, and the Housing Opportunities for Persons with HIV/AIDS Program (HOPWA). Social Security’s income programs for those who are disabled (SSI and SSDI) are important sources of support. The Centers for Disease Control and Prevention (CDC) leads U.S. surveillance and prevention activities, which are carried out in conjunction with state and local health departments. In addition to government efforts, a wide range of community and other organizations provide services for people with HIV and those at risk for HIV.
• The passage of the Affordable Care Act (ACA) in March 2010 provided new opportunities for expanding health care access, prevention, and treatment services for millions of people in the U.S., including many people with or at risk for HIV. Importantly, for people living with HIV, there also new protections in the law that make access to health coverage more equitable. In particular, the expansion of the Medicaid program (in states that have elected to expand their programs) has been an important source of new coverage for people with HIV.⁶⁴ The law also provided new opportunities for coverage in the private individual market, through the creation of health insurance marketplaces with subsidies available to those on low and moderate incomes. Additionally, the ACA included non-discrimination policies, including a prohibition on rate setting tied to health status, elimination of preexisting condition exclusions, and an end to lifetime and annual caps.^65,66 The laws protections also prohibited discrimination based on sex which the Biden Administration has interpreted to cover sexual orientation and gender identity.⁶⁷