What to know
CDC collects, analyzes, interprets, and disseminates data and then develops resource materials that describe the HIV landscape in the United States, help stakeholders understand successes and gaps in HIV prevention and care, and ensure understanding of emerging trends.
Issue briefs
Nearly 1 million people in the United States identify as transgender.1 The term transgender describes a person whose gender identity or expression is different from their sex assigned at birth and is often used as an umbrella term to include people of additional, non-cisgender identities. Transgender people, particularly transgender women, are heavily affected by HIV and transgender women are among the groups most disproportionately affected by HIV in the U.S.
To end the HIV epidemic, CDC is actively working with public health partners, other federal agencies, and community leaders to improve HIV prevention and care for transgender people nationwide and reduce health disparities.
What the data tell us
Improving data on HIV among transgender populations
Accurate, timely data are critical for designing, directing, and evaluating HIV prevention programs. But since the beginning of the epidemic, there has been limited national information on the impact of HIV among transgender populations. In large part, this is because there has been no reliable system for collecting and sharing both sex and gender identity information in health records.
In 2020, CDC released National HIV Surveillance System data for transgender people for three Ending the HIV Epidemic in the U.S. (EHE) core indicators: diagnoses of HIV infection, linkage to HIV medical care, and viral suppression. This data release was the result of many years of effort by CDC and state and local health departments to standardize and improve data collection, quality, and reporting. These efforts included:
- Revising the data fields used in CDC's National HIV Surveillance System (NHSS) to better account for sex and gender identity.
- Issuing recommendations and statistical tools for health departments to collect information on current gender identity and report these data to the NHSS.
- Informing healthcare providers about the importance of collecting complete data on sex and gender identity.
CDC continues to improve information gaps on HIV among transgender people by:
- Analyzing data on HIV testing among transgender people through CDC's Behavioral Risk Factor Surveillance System.
- Funding health departments to study behaviors that increase HIV transmission risk, testing behaviors, and the use of prevention services among transgender women through CDC's National HIV Behavioral Surveillance system.
HIV prevalence
To estimate the percentage of transgender people with HIV in the U.S., or HIV prevalence, CDC scientists conducted a meta-analysis of 88 studies published from 2006-2017. The analysis confirmed that transgender people are disproportionately affected by HIV. Laboratory-confirmed HIV prevalence was 14.1% for transgender women, 3.2% for transgender men, and 9.2% for transgender people overall.2 By comparison, estimated HIV prevalence for U.S. adults overall is less than 0.5%.34
Another recent CDC study highlighted the severe toll of HIV among transgender women. Surveys conducted in seven U.S. cities found that four in ten transgender women had HIV, with stark racial and ethnic differences in HIV rates among respondents. 62% of Black transgender women and 35% of Hispanic/Latina transgender women surveyed had HIV, compared to 17% of White transgender women. Nearly two-thirds of the women surveyed lived at or below the poverty level, and 42% had experienced homelessness in the past 12 months.5
HIV diagnoses
Since 2018, CDC has published national-level HIV diagnosis data by gender, which includes data for transgender people and people of additional gender identities. The most recent surveillance report found that HIV diagnoses among transgender adults and adolescents increased 9% in the U.S. and six dependent areas from 2015 to 2019.
In 2019, transgender people accounted for approximately 2% of HIV diagnoses among all adults and adolescents. The vast majority (93%) of HIV diagnoses among transgender people occurred among transgender women. Surveillance data from 2019 also show:
- 46% transgender women and 41% of transgender men who received an HIV diagnosis were African American
- 77% of transgender women and 91% of transgender men received an HIV diagnosis between the ages of 13 and 34
- 43% of transgender women and 41% of transgender men who received an HIV diagnosis lived in the Southern U.S.6
Systemic factors that contribute to the HIV epidemic among transgender people
- Many transgender people face stigma, discrimination, social rejection, and exclusion that can prevent them from accessing health care, education, employment, and housing and can contribute to poor mental health outcomes. Transgender people also experience high rates of incarceration and violence. A recent CDC survey of high school students who identify as transgender found that in the year prior to the survey, 35% had been bullied at school and 35% had attempted suicide. These factors affect the health and wellbeing of transgender people, increasing the likelihood they may acquire HIV.7891011
- Transgender people of color also face systemic racism, which can lead to HIV disparities. One study found that young racial/ethnic minority transgender women were significantly more likely to experience discrimination than young White transgender women.12 Other surveys have found that transgender people of color report higher rates of poverty, homelessness, and unemployment compared to White transgender people.1314 These factors can result in increased HIV transmission risk.
- Insensitivity to transgender-specific health needs by providers, including disregard for a transgender person's gender identity, can be a significant barrier for transgender people with HIV seeking quality treatment and care services.15 One study found that transgender youth were more likely to miss HIV care appointments if they were treated negatively because of their gender identity.16 Another study found that unmet needs for gender affirmation, including surgical needs and not being on hormones, were significantly associated with HIV treatment interruptions.17
- The effectiveness of HIV behavioral interventions, developed for other groups most affected by HIV and adapted for use with transgender people, is understudied. According to a 2017 study, most existing interventions target behavior change among transgender women, with only one HIV prevention program evaluated for transgender men. Evidence-based multilevel interventions that address the structural, biomedical, and behavioral factors that increase HIV transmission risk among transgender populations, including transgender men, are needed to address disparities in HIV prevalence.18
- Transgender people are not being sufficiently reached by pre-exposure prophylaxis (PrEP).19 Studies have found that low uptake of PrEP among transgender women may be due to a range of factors, including medical mistrust due to experiences of transphobia, lack of trans-inclusive marketing, and concerns about drug interactions between hormones and PrEP.2021
CDC's support for transgender-specific HIV prevention
CDC is collaborating with many partners to intensify HIV prevention efforts for transgender people and build the base of evidence needed to improve programs and track progress.
Delivering high-impact prevention
Transgender people are a priority for CDC's core HIV prevention funding programs, including funding to state and local health departments and community-based organizations (CBOs). CDC is providing 36 CBOs with focused funding of nearly $14 million per year over five years to support HIV testing, linkage to care, and prevention services for transgender youth of color and young gay and bisexual men of color. CDC also funds a national network of capacity-building providers that help health departments and CBOs provide culturally relevant programs, services, and interventions for transgender people.
A new pilot program will fund CBOs to develop community-to-clinic health models to provide access to integrated status-neutral HIV prevention and care services, gender-affirming services that include access to OR referral to hormone therapy, and primary health care. The funding opportunity also supports linking transgender persons to services as needed for mental health and substance use disorder and other essential support services. These three elements working together will provide a supportive foundation that will lead to an increase by transgender persons to access HIV prevention and treatment services, decrease HIV transmission, and improve their overall health and wellbeing.
Through the Ending the HIV Epidemic in the U.S. initiative, CDC supports efforts to advance health equity and overcome barriers to HIV prevention and treatment in the 57 areas of the country hardest hit by HIV. The initiative requires funded recipients to actively engage people with and affected by HIV in the design and implementation of localized HIV prevention activities. This effort includes the use or expansion of innovative community-tailored HIV testing and care strategies for transgender people.
CDC's Together TakeMeHome self-testing pilot program is an internet-based program that successfully provided 100,000 free HIV test kits to anyone who requested one, with a focus on reaching Black and Latina transgender women, among other groups. Among transgender persons who ordered test kits, 24% of transgender women and 30% of transgender men reported never being tested for HIV.
Finally, CDC offers educational materials for healthcare and social service providers to help them improve care for transgender people with HIV and make clinical environments more welcoming to transgender patients.
Advancing HIV prevention research
While many prevention programs have been adapted for use with transgender populations, to date, few have been tested and proven effective. To address this gap, CDC is working with partners to develop new prevention programs, adapt existing ones, and rigorously assess their impact on HIV transmission. For example:
- As part of its Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention, CDC included the "Couples with HIV Intervention Program," which focuses on reducing behaviors that increase HIV transmission risk among transgender women and their primary cisgender male partners. The Compendium also includes "Link LA," a peer-navigator intervention to improve linkage to and retention in HIV care among transgender women with HIV who are released from jail.
- CDC is supporting CBOs in Atlanta and Chicago to pilot Transgender Women Involved in Strategies for Transformation (TWIST), a peer-led educational intervention that seeks to reduce behaviors that increase HIV transmission risk and sexually transmitted diseases among transgender women with HIV. TWIST was developed in collaboration with transgender women and was adapted from an existing HIV intervention focused on cisgender women.
- CDC is studying two locally developed or adapted interventions that are designed to deliver a combination of HIV prevention and other support services to transgender people who have sex with men and other people who could benefit from prevention services. These interventions are a combination of mutually reinforcing biomedical, behavioral, and social/structural intervention components that together have the potential to reduce participants' likelihood of acquiring HIV.
Raising awareness, engaging communities
Evidence-based health marketing campaigns can help motivate people to know their level of risk, take actions to protect their health, and seek care and treatment. CDC's Let's Stop HIV Together campaign provides and disseminates an extensive portfolio of campaign resources, including tailored resources for transgender audiences. Let's Stop HIV Together aims to empower communities, partners, and healthcare providers to promote testing, prevention, and treatment, as well as reduce HIV stigma. The campaign's HIV Nexus clinician portal includes the Transforming Health website featuring information and materials for health care providers, with the goal of reducing new HIV infections and improving the health of transgender people. The campaign is part of the national Ending the HIV Epidemic in the U.S. initiative.
Let's Stop HIV Together engages groups most burdened by HIV and has strong partnerships, including with organizations, individual ambassadors, and influencers representing transgender communities. CDC also supports National Transgender HIV Testing Day each June by engaging in partnership activities and disseminating materials and messages for transgender audiences and for clinicians serving transgender patients.
Need for collective action
Despite significant challenges, there is much that can be done now to address key gaps in HIV prevention and care for transgender people. CDC plays a critical role, and action is also needed from many other partners:
- Federal health agencies can promote gender-affirming and status-neutral approaches to HIV prevention and care that consider the needs of the whole-person ahead of their HIV status – and provide guidance to state and local health departments with best practices for implementation. They can collect data on gender identity and include transgender people and people of other gender identities in federal decision-making and advisory committees. Agencies can also develop funding opportunities focused on reducing stigma and improving HIV prevention and care programs for transgender people.
- State and local health departments can continue to improve data on HIV among transgender people by collecting, compiling, and reporting data on sex and gender identity and training providers and organizations on how to collect and report such data. They can also fund local programs focused on eliminating stigma and improving access to HIV prevention and care for transgender people.
- Healthcare providers and community-based organizations can use a status-neutral framework to provide culturally informed, comprehensive HIV care for transgender people. This framework includes educating patients about effective prevention methods like PrEP; creating linkages to appropriate support services so transgender people with HIV can stay engaged in care and become virally suppressed; and providing tailored care that also addresses other transgender-specific health needs.
- Elected and community leaders can advocate for policies that support the health and wellbeing of transgender people and work with their communities to reduce HIV-related stigma.
- Researchers and their institutions can conduct additional research to expand the body of evidence on effective strategies to reduce HIV infections and improve HIV and other health outcomes for transgender people.
There is great potential to address the HIV prevention and health care needs of transgender people. CDC will continue working with partners and the community to ensure that transgender people can access the HIV prevention and care services they need to live long, health lives.
Powerful HIV prevention and treatment tools help keep people healthy and prevent HIV transmission, but nonmedical factors, known as social determinants of health, also influence HIV-related health outcomes. Social determinants of health are the conditions in which people are born, grow, work, live, and age, and the broader set of forces and systems that shape conditions of daily life.22 Housing acts as a social determinant of health; research tells us that where someone lives influences their health and wellbeing, and that stable housing is associated with better health outcomes.2324
How housing affects health
Where someone lives—both in terms of the stability, affordability, and quality of housing, and the characteristics of their neighborhood—can have a profound impact on their health and wellbeing.
A lack of affordable housing options can limit a person's ability to maintain stable housing and access other services, including staying engaged in ongoing health care.25 An overall inadequate supply of affordable housing in the United States, paired with regulations that discourage the development of new housing, creates barriers to maintaining stable housing for many.
Over the last five years, the average rent in the United States has increased 18%.26 Job and income losses related to the COVID-19 pandemic have increased challenges with housing affordability for millions of households, especially lower-income households and households of color.26 In 2020, 30% of households across the country were cost-burdened, meaning they were paying more than 30% of their incomes on housing.27 Fourteen percent of households were severely cost-burdened, paying more than 50% of their incomes on housing.27 The increase in unaffordable housing is linked to increasing rates of housing instability and homelessness. Some populations, especially Black/African American (hereafter referred to as Black), Hispanic/Latino, and other communities of color, as well as transgender communities, also face housing-related discrimination, further limiting their access to stable housing.2829
Stable housing is closely linked to successful HIV-related health outcomes. People experiencing homelessness or housing instability have higher rates of HIV and mental health disorders than people with stable housing.3031 People experiencing homelessness or housing instability are also more likely to engage in activities associated with increased chances of HIV acquisition or transmission, including substance use, injection drug use, and having multiple sex partners—factors that can also contribute to higher rates of sexually transmitted infections (STIs) and hepatitis.32333435 People with HIV also experience greater risk for inadequate care and treatment due to unstable housing and housing loss.25 According to CDC data, in 2020, 17% of people with diagnosed HIV experienced homelessness or other forms of unstable housing.36
What the data tell us
Housing instability is a significant barrier to HIV care
Research shows that housing instability is a significant barrier to HIV care and is associated with higher rates of behaviors that may increase the chance of getting or transmitting HIV, such as substance use and condomless sex.25313237 People with HIV experiencing homelessness are also more likely to delay entering HIV care, have reduced access to regular HIV care, and poorer adherence to antiretroviral treatment.32
HIV testing: Data show that people experiencing homelessness or housing instability are less likely to report having tested for HIV in the past year38 or ever,39 compared to people with stable housing. One study found that gay and bisexual men experiencing homelessness are over 15 times more likely to delay HIV testing than those with stable housing.40 Having access to general medical services is associated with higher likelihood of HIV testing,41 and recent access to any medical or dental services increases the likelihood of HIV testing among people experiencing homelessness.42 Meeting people where they are with the services they need can help overcome barriers posed by unstable housing and homelessness and support people to access and stay engaged in care.
PrEP use: People with unstable housing face barriers to accessing HIV pre-exposure prophylaxis (PrEP), which reduces the risk of getting HIV from sex by about 99% when taken as prescribed.434445 One study found that knowledge of PrEP was low among youth experiencing homelessness, especially in the U.S. Midwest and South; only 29% had any knowledge of PrEP and only 4% had talked with a provider about PrEP.46
HIV treatment: People experiencing homelessness are less likely to receive and adhere to antiretroviral therapy (ART), compared with people who have stable housing.3247 In one study, Black gay and bisexual men who self-reported homelessness were more likely to report difficulty taking ART and of missing a dose in the past week, compared to those with stable housing.48 Another study found that homelessness can affect ART adherence among people with HIV who inject drugs due to multiple factors, including lacking a place to store the medication and lack of privacy.49
Viral suppression: Taking HIV medication as prescribed can help people with HIV stay healthy, and get and stay virally suppressed, or have an undetectable amount of HIV in their blood, which means they will not transmit HIV to their sex partners. Research shows that housing instability and homelessness can create barriers to becoming and staying virally suppressed.3350 Transitioning to more stable housing can help people stay engaged in HIV care and get and stay virally suppressed.51
Ending the HIV epidemic in the United States requires implementing integrated solutions that address the comprehensive health, social services, and housing needs of people with HIV and people who could benefit from HIV prevention so they can stay healthy and prevent HIV acquisition or transmission. CDC is actively working with other federal agencies, people with HIV, and other community leaders to implement strategies that increase access to affordable, high-quality housing and support national HIV prevention goals.
Some populations are disproportionately affected by both housing instability and HIV, highlighting persistent disparities in access to critical health and social services by race, ethnicity, age, and gender identity.
Black people make up over 40% of the population experiencing homelessness in the United States,57 and 42% of new HIV diagnoses,58 despite making up only 14% of the population.59 Due to historical racial discrimination and residential segregation, some Black people live in communities with the highest social vulnerability, in which a number of factors, including poverty, lack of transportation access, and crowded housing, increase vulnerability to negative health outcomes and make it harder to obtain HIV care services. Black adults who live in communities with high social vulnerability have increased chances of receiving an HIV diagnosis compared with Black adults in communities with the lowest social vulnerability.6061 In 2019, 11% of Black people with HIV reported homelessness in the past year.37
Hispanic/Latino people make up just over 22% of the population experiencing homelessness in the United States,57 and 27% of new HIV diagnoses,58 despite making up only 19% of the population.59 Data show that over 8% of Hispanic/Latino people experience homelessness at some point during their lives.60 In 2020, 8% of Hispanic/Latino people with HIV reported homelessness in the past year. 37
Young people with unstable housing experience up to 12 times greater risk of HIV infection than those with stable housing,6263 and young people with HIV experience higher rates of homelessness than do people with HIV in other age groups. In 2019, youth (ages 13-24) and younger adults (ages 25-34) made up 57% of new HIV diagnoses,64 and 14% of people ages 18-24 and 16% of people ages 25-34 reported homelessness in the past year.37 While youth experiencing housing instability or homelessness have overall high rates of HIV testing (attributable in part to availability of HIV services at youth drop-in centers),6566 research suggests that this population faces increased barriers to HIV prevention education and PrEP uptake, including perceived lack of risk and concerns about medication side effects and cost.67
Transgender and gender non-conforming people are more likely to experience housing instability or homelessness than cisgender people.68 From 2016 to 2019, the number of adult transgender people experiencing homelessness in the United States increased 88%.68 One analysis of studies conducted between 2006 and 2017 found that 30% of transgender people reported unstable housing or homelessness.69 Transgender people are also affected by HIV: in 2019, transgender people accounted for 2% of new HIV diagnoses in the United States and dependent areas, and HIV diagnoses among transgender people increased 7% between 2015 and 2019.64 Transgender women are disproportionately affected by HIV, with prevalence estimated at 14%.69
Structural interventions that address housing and HIV-related health needs in an integrated, comprehensive way can improve health outcomes for people with HIV and people who could benefit from HIV prevention. 70Among people without HIV, long-term supportive housing for people who need it can decrease the risk of getting HIV.71 For people with HIV, rental assistance programs can help increase access to stable housing, and support improved health outcomes for those experiencing homelessness and housing instability.72
Studies have shown that meeting people experiencing housing instability where they are with needed services can help improve HIV-related health outcomes. For example, one study found that rapid HIV testing outside of traditional care settings, such as homeless shelters, increased testing uptake among people experiencing homelessness or housing instability.38 Accessible and flexible PrEP navigation services tailored to clients' needs, including street-based outreach, have also been shown effective in achieving PrEP initiation and adherence among people who use drugs and are experiencing homelessness that are comparable to rates among other populations.73
Some studies have demonstrated that housing-focused interventions, such as those that provide rental assistance, permanent supportive housing, case management, and follow-up services, can be cost-effective strategies for HIV prevention.7475 One study found that preventing only one HIV transmission for every 64 clients would make such interventions cost-effective.76
How federal agencies are addressing housing and HIV
The National HIV/AIDS Strategy for 2022-2025 calls for a whole-of-society national response to accelerate efforts to end the HIV epidemic in the United States by 2030 and support people with and affected by HIV with the services they need to be healthy. The national strategy specifically calls for approaches that address housing and other social determinants of health alongside other co-occurring conditions that impede access to HIV services and exacerbate HIV-related disparities.77 A federal implementation plan released in August 2022 outlines how collaborations within and across federal agencies can advance strategy goals and improve quality of life and health outcomes for people affected by HIV.
The federal Ending the HIV Epidemic in the U.S. (EHE) initiative, launched by the U.S. Department of Health and Human Services (HHS) in 2019, also supports innovative, community-driven solutions to help people access the HIV, healthcare, and social services they need to stay healthy. Through cross-agency collaboration, the initiative seeks to improve service coordination and eliminate social and structural barriers to prevention and care.
CDC
Programs across CDC recognize the importance of addressing social determinants of health, including housing, to improve health outcomes. As part of its overarching goal to advance health equity, CDC is collaborating internally and externally with diverse partners to identify best practices for addressing housing and HIV.
CDC is charged with the mission of preventing HIV and improving HIV-related health outcomes, including by addressing social determinants of health. CDC's activities to address housing and HIV include:
Cross-CDC collaborations: Across CDC, programs and health equity leaders collaborate to share data and develop, assess, and implement interventions that address social and structural determinants of health, including housing, in line with CDC's priorities for reducing sexually transmitted diseases (STDs) (Strategic Plan 2022-2026 and Community Approaches to Reducing Sexually Transmitted Diseases initiative).
Community engagement: Meaningfully engaging with communities and partners is a vital part of CDC's process to develop programs and activities that address barriers to HIV and other health and social services. CDC prioritizes hearing from and collaborating with people with HIV through ongoing community listening sessions and building partnerships with organizations and other federal agencies focused on issues that intersect with HIV and affect health outcomes, including housing. CDC has hosted roundtables with regional leaders and town halls with community members to gain community insight into local HIV and housing efforts and how CDC can support those initiatives.
Program implementation: CDC supports state and local health departments and community-based organizations to implement evidence-based, high-impact programs to improve access to HIV and other health and social services. Through EHE, CDC funds 32 state and local health departments to implement locally tailored and integrated solutions to meet the unique needs of their communities. This funding also provides flexibilities for health departments to use funds to support housing. CDC also funds over 100 community-based organizations and their clinical partners to deliver comprehensive HIV services to communities disproportionately affected by HIV. CDC also supports the Housing Learning Collaborative, a virtual learning community to build capacity of EHE jurisdictions to develop and implement innovative programs to respond to housing-related needs. CDC's HIV Strategic Plan Supplement for 2022-2025 includes a focus on status neutral and whole-person approaches to HIV prevention and care that address social and structural barriers that deter people from seeking the care they need.
HIV surveillance data: CDC's National HIV Surveillance System is the primary source for monitoring HIV trends in the United States. CDC funds and assists state and local health departments to collect the information and report de-identified data to CDC for analysis and dissemination. Based on this information, CDC can direct HIV prevention funding to communities where it is needed most. Additionally, the Medical Monitoring Project, led by state, local, and territorial health departments in partnership with CDC, collects data on HIV care engagement and barriers to care, including housing instability and homelessness, among people with diagnosed HIV to help determine the health and social services people need to stay engaged in care.
Research: CDC conducts research and demonstration projects to build the evidence base for effective HIV prevention interventions. The Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention includes several housing-focused HIV prevention and care interventions. These include the Enhanced Housing Placement Assistance program for people with HIV experiencing homelessness; the Shelter Plus Care program in Ohio, which is regulated by the U.S. Department of Housing and Urban Development (HUD) and provides rental assistance and supportive services to people with HIV experiencing homelessness and their families; and the Health Resources and Services Administration (HRSA) Homeless Initiative, which provides patient navigation services to people with HIV experiencing homelessness or housing instability.
HUD
The U.S. Department of Housing and Urban Development (HUD) recognizes quality, affordability, stability, and location of a home are important factors for health and well-being. HUD administers a variety of housing assistance programs with a broad reach and ability to assist people with HIV, very low-income families, the elderly and aging, persons with disabilities, and others in need of housing assistance.
HUD's Housing Opportunities for Persons With AIDS (HOPWA) program is the only federal program dedicated to housing for people with HIV. HOPWA was established by the AIDS Housing Opportunity Act to address the housing needs of individuals with HIV and low incomes and their families. Through HOPWA, HUD's Office of HIV/AIDS Housing awards grants to local communities, states, and nonprofit organizations to provide rental housing assistance and supportive services for over 100,000 people with HIV and their families annually. HUD provides technical assistance to HOPWA grantees to strengthen their capacity and support communities to develop comprehensive housing strategies. Other HUD programs, including the Housing Choice Voucher, Continuum of Care, and Emergency Solutions Grants programs, also provide safe, stable housing that enables people to prioritize their health and participate in HIV prevention or care services. HUD supports activities and initiatives that expand access to HIV housing and services, reduce stigma, and help people access and remain in medical care. For example:
Cross-agency collaborations: In support of the National HIV/AIDS Strategy federal implementation plan, HUD is working in partnership with CDC to address recent HIV outbreaks in the United States involving people experiencing unstable housing, and the complex and overlapping challenges they face, such as substance use and mental health disorders, injection drug use, food insecurity, and stigma. In October 2022, CDC, HUD, and HRSA presented on HIV outbreak responses at the U.S. Conference on HIV/AIDS (USCHA).
HOPWA funding: On December 1, 2021, HUD awarded over $40 million to 20 communities to implement new projects that align with ending the HIV/AIDS epidemic initiatives and elevate housing as an effective structural intervention in ending the epidemic. Selected applicants received a three-year grant to fund housing assistance and supportive services for low-income people with HIV and their families, coordination and planning activities, and grants management and administration. Additionally, HOPWA funded 143 formula jurisdictions and 82 competitive permanent supportive housing grants in Fiscal Year 2022 with an allocation of $450 million.
Demonstration projects: Since 2016, HUD's YHDP, Youth Homelessness Demonstration Project has supported communities across the United States to develop and implement a coordinated community approach to prevent youth homelessness. In 2022, CDC and HUD jointly presented a webinar on HUD programs focused on youth populations such as YHDP, Foster Youth to Independence and Family Unification Program can best connect young people to HIV education and services.
Research and knowledge sharing: In 2021, HUD released research on innovative state and local government strategies to remove regulatory barriers to affordable housing and increase housing supply, in order to support inclusive, equitable communities. To promote sharing of knowledge and best practices, HUD's Office of Fair Housing and Equal Opportunity (FHEO) holds a Table Talks Series to engage HUD grantees and other partners in discussions on fair housing policies.
HRSA
The Health Resources and Services Administration's (HRSA) Ryan White HIV/AIDS Program (RWHAP) serves more than half of all people with diagnosed HIV in the United States, including more than 25,000 people experiencing housing instability.78 RWHAP helps people with HIV with low incomes receive medical care, medications, and other essential support services to help them stay healthy and engaged in care. HRSA's Bureau of Primary Health Care (BPHC) supports community health centers to provide primary and preventive care.
HRSA supports innovative interventions, initiatives, and funding models that increase housing access and collaborates with other agencies to promote integration of HIV and housing-related services. For example:
Cross-agency collaborations: CDC is collaborating with other federal agencies, including HRSA and HUD, to cultivate a practice of knowledge sharing and build upon existing efforts to advance health equity and improve HIV-related health outcomes. This includes identifying opportunities for braiding funds and developing inter-agency guidelines on what is allowable; streamlining and harmonizing Notice of Funding Opportunity reporting requirements across CDC and other agencies; and providing guidance and technical assistance to partners and grantees to maximize the effectiveness of housing and HIV-related interventions.
Funding for primary and preventive care: Through BPHC, HRSA's Primary Care HIV Prevention (PCHP) funding expands access to HIV prevention services, including HIV testing, PrEP, and linkage to HIV care and treatment in EHE-funded jurisdictions. BPHC's National Health Care for the Homeless Program also supports community-based organizations to provide high-quality, accessible health care, including prevention services, to people experiencing homelessness.
Guidance:
- In 2016, HRSA issued guidance to RWHAP providers clarifying that Part C funding can support temporary housing services and reducing reporting requirements.
- When HUD's HOPWA program changed how it allocates funding in 2017, HRSA and HUD jointly presented at national conferences to increase understanding of how funding changes could impact RWHAP providers and provided technical assistance on leveraging other funding sources to support people with HIV experiencing housing instability.
- In 2017, HRSA and HUD released a joint statement to funded organizations encouraging the sharing of data across systems to better coordinate and integrate medical and housing services for people with HIV. In 2019, the agencies released a toolkit for service providers with best practices for sharing data and improving service coordination
Demonstration projects and research: HRSA's Special Projects of National Significance (SPNS) program supports the development of innovative models of HIV treatment and care to respond to the emerging needs of RWHAP clients and promote the dissemination and replication of successful interventions. Housing-related SPNS projects include:
- HRSA's Homeless Initiative provides patient navigation services for people with HIV experiencing housing instability. A study of the initiative found that people who stabilized their housing were more likely to stay engaged in HIV care, be prescribed ART, and become virally suppressed
- HIV, Housing & Employment Project was launched in 2017 with support from the Minority HIV/AIDS Fund to support the design, implementation, and evaluation of innovative interventions that coordinate HIV care and treatment, housing, and employment services for people with HIV in racial and ethnic minority communities
- Addressing HIV Care and Housing Coordination through Data Integration was an initiative to support the electronic integration of housing and HIV care data and improved service delivery coordination between RWHAP and HOPWA
- Supporting Replication (SURE) of Housing Interventions was launched in 2022 to evaluate the implementation of housing-related interventions for people with HIV experiencing housing instability and from communities disproportionately affected by HIV, including LGBTQ+ people, youth and young adults (ages 13-24), and people who have been involved with the justice system
Spotlight on HIV and housing programs in EHE jurisdictions
- Riverside, CA: Riverside County's Housing Authority and local nonprofit TruEvolution launched Project Legacy to provide permanent supportive housing, health care, mental health support services, workforce development, and other wraparound services for LGBTQ+ people and people with HIV experiencing housing instability.79
- San Francisco, CA: Through San Francisco's Ryan White HIV/AIDS Program-funded Ward 86 HIV clinic, the POP-UP Project enrolled clients experiencing homelessness or unstable housing and provided them with low-barrier primary care services, outreach via peer navigator, and integrated social work and case management services. A study of the project found high levels of care engagement among enrollees, despite overlapping challenges of unstable housing, substance use, and mental health conditions.80
- Chicago, IL: Chicago House provides housing support, medical case management, and other wraparound services, including linkage to PrEP and mental health services for people experiencing housing instability. Their clients are primarily people with HIV, people who could benefit from HIV prevention, LGBTQ+ and transgender people. Among 41 Housing for PrEP Users clients housed between October 2019 and September 2022, 80% were Black/African American and 20% were Hispanic/Latino; 93% were ages 18 to 35; and 98% identified as gay or bisexual. In addition, over 75% of clients were employed and increased their income while in the program, and 86% of clients who exited the program moved into permanent housing. Notably, 100% of clients remained HIV-negative while in the program. In 2021, 97% of people with HIV in Chicago House residences were linked to and retained in care, and 90% of people with HIV in Chicago House residences were virally suppressed.81
- Boston, MA: In response to increasing rates of HIV transmission, Boston Health Care for the Homeless Program launched an innovative PrEP program for people experiencing homeless who inject drugs that provides PrEP navigation services and street-based outreach tailored to client needs, without requiring abstinence from substance use. Of the clients linked to PrEP services, initial data show that 64% were prescribed PrEP and 85% of those prescribed PrEP picked up their prescription. Participants and providers identified program components that facilitated patient engagement, including community-driven PrEP education, accessible programming and same-day prescribing, intensive outreach and navigation, and trusting patient-provider relationships.7382
- Kansas City, MO: With support from RWHAP and HOPWA, the Kansas City health department launched KC Life 360, a client navigation initiative that coordinates housing and employment services for people with HIV from racial/ethnic minority communities who are experiencing housing instability. The program has improved housing stability and HIV-related health outcomes for participants, with 87% engaging in medical care and 86% becoming or staying virally suppressed.8384
- Memphis, TN: With support from the Memphis Ryan White Part A Program and Kellogg Health Scholars Program, a partnership was formed between the Shelby County Health Department, Operation Outreach (a federally qualified faith-based health center's mobile healthcare clinic), and a university to survey and provide voluntary on-site rapid HIV testing services to adults living in transitional housing in the Memphis area. Nearly 90% of survey respondents agreed to test for HIV, suggesting that providing testing services outside of traditional clinical settings is acceptable for this population.38
The path forward
Continued collaboration with diverse partners can help sustain and advance strategies that consider housing alongside other comprehensive health and social service needs that are critical to ending the HIV epidemic. For instance:
Federal agencies can support inter- and intra-agency collaboration to support policies and programs that address housing and other social determinants of health within holistic HIV programming. For example, they can direct funding and other resources to health departments and other community-based partners implementing integrated services. Federal agencies can also continue to fund and conduct research to build the evidence base for housing-related HIV interventions, and garner support for housing interventions as an effective strategy for improving HIV-related outcomes and reducing long-term health care costs.
Policymakers and elected officials can advance policies that address social determinants of health and increase access to affordable housing, including for people with HIV. They can also invest resources in housing programs for people with HIV, including HOPWA and RWHAP, and invest in other supportive housing efforts for people without HIV who could benefit.
State and local health departments can ensure strong linkages between their infectious disease and housing programs to address housing needs as part of their comprehensive HIV programs. They can direct funding, where possible, toward innovative community-based organization programming that integrates HIV and other health and social services. They can also consider hiring patient navigators to help clients gain access to the services they need to stay healthy, including housing support.
Healthcare, community-based, and other service providers can meet people where they are with integrated HIV and other health and social services, including outside of traditional clinical settings, such as through telehealth, mobile units, STI clinics, syringe services programs (SSPs), and shelters. They can also implement integrated models of care that link people to the health and social services they need, including through patient navigator programs. They can also provide HIV prevention education specific to populations experiencing housing instability.
Community leaders can work to build federal, state, and local support for integrated service models for people with HIV and people who could benefit from HIV prevention. For example, they can speak about the benefits of integrating health and social services, like housing support, to address comprehensive, whole-person needs. They can also speak about the importance of staying engaged in ongoing HIV and other care.
Ensuring that everyone gets tested for HIV is a critical first step to end the epidemic and is a core strategy of the federal Ending the HIV Epidemic in the United States initiative. HIV testing serves as a pathway to prevention and care services for all people. Any HIV test result should lead to engagement in high-quality health care for people who could benefit from HIV prevention or treatment. For people with undiagnosed HIV, testing enables them to rapidly begin HIV treatment to protect their health, prevent further transmission of the virus, and access testing and treatment for sexually transmitted infections (STIs). For people who do not have HIV, testing creates an opportunity to be connected to powerful HIV prevention services, including pre-exposure prophylaxis (PrEP) and STI services. In 2020, HIV testing decreased noticeably across the country as the COVID-19 pandemic made it more difficult to access traditional, in-person testing services. HIV self-testing programs offer an innovative way to bridge gaps in access to HIV testing and ensure that HIV testing is simple and more accessible for all.
Benefits of HIV self-testing
CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine medical care, and that some groups at increased risk of HIV transmission be tested more frequently. But a 2019 CDC analysis of national survey data found that most Americans (61%) had never been tested for HIV, and less than 30% of people in the United States most at risk of acquiring HIV had been tested in the year prior to the survey.85
Research shows that HIV self-testing is an effective, convenient, and accurate way to diagnose HIV infection. CDC's recent Evaluation of Rapid HIV Self-testing Among Men who have Sex with Men Project (eSTAMP) study found that more than twice as many gay and bisexual men who were mailed free self-tests learned they had HIV compared with men who were only provided web-based access to HIV prevention information and resources. Nearly half of men with newly diagnosed HIV had not been tested in the past year. The eSTAMP study also found that self-testing increased the uptake of HIV testing; enabled more frequent testing; and resulted in people seeking care or additional testing after obtaining a positive result. Additionally, the study found that providing free self-tests increased awareness of HIV infection not just among the men who received the tests, but also among their social networks.86
Studies have shown that many people find self-testing both acceptable and, in some cases, preferable to in-person testing, and that it is feasible for people to correctly administer rapid self-tests and accurately interpret the results.878889Studies also show that self-testing can be particularly effective in reaching gay and bisexual men and people who never or rarely access HIV testing services.9091 Self-testing is both cost-effective and cost-saving to implement. A modelling study based on CDC's eSTAMP trial estimated that implementing a comparable HIV self-testing program would save nearly $1.6 million in lifetime HIV treatment costs.91
Self-testing also addresses many barriers to in-person HIV testing, including COVID-19-related service disruptions and individual concerns about seeking in-person care during the pandemic. By increasing privacy, confidentiality, and anonymity, self-testing eliminates the HIV-related stigma and discrimination that may prevent people from seeking in-person HIV testing.92939495 It can also be easier and more convenient for people who are unable to get tested in person by their healthcare provider, such as people who live far from HIV testing services. Self-testing reduces the amount of time it takes to get tested, enables people to test at home or other private location at any time of day, and eliminates potential transportation and geographic barriers.969798
CDC’s focus: Making HIV self-testing simple, accessible, and routine
To ensure that HIV self-testing services are available to all who could benefit from them, CDC conducts a range of activities to support and expand the implementation of self-testing:
Funding partners to deliver HIV self-testing services
Through CDC's major funding programs, the agency provides resources for its health department and CBO partners to develop, implement, and refine HIV self-testing programs.
Integrated HIV prevention and surveillance for health departments: CDC's flagship HIV prevention funding program enables all state, territorial, and local health departments to strengthen current HIV testing services or create new ones, including self-testing programs.
Ending the HIV Epidemic in the U.S. implementation: Through the Ending the HIV Epidemic in the U.S. initiative, CDC awarded funding to health departments in 57 jurisdictions to scale up and promote rapid self-test distribution programs in healthcare and non-healthcare settings. This effort includes providing HIV self-tests that clients can take away for themselves or distribute to others.
Comprehensive HIV prevention with CBOs: Beginning in 2021, CDC is providing resources to 96 CBO grantees to implement comprehensive HIV prevention programs, including self-testing and efforts focused on recruitment, follow-up, and linkage to care. This funding will also support integrated STI screening through mail-in self-tests.
HIV self-testing for young gay and bisexual men and young transgender people of color: CDC currently funds 30 CBOs to implement comprehensive HIV prevention programs that include the use of HIV self-testing to reach young gay and bisexual men of color and young transgender people of color.
Conducting and amplifying HIV self-testing research
CDC works with its partners to conduct research to improve and refine the delivery of HIV self-testing and implementation of self-testing programs. This work focuses on better understanding how self-testing can help increase HIV testing uptake, improve HIV diagnosis, and help connect people who could benefit most to HIV prevention and treatment services. Additional studies and programs sponsored or led by CDC include:
The eSTAMP study:99 CDC's national, randomized clinical trial evaluated the benefits of mailing free HIV self-tests to gay and bisexual men. Providing free HIV self-tests identified people with undiagnosed HIV and increased awareness of HIV among the men who participated in the trial, as well as among members of their social networks.
The iSTAMP (Implementation of Rapid HIV Self-Testing Among Men who have Sex with Men Project) study:100 this clinical trial aims to assess the effectiveness of providing rapid self-tests and a comprehensive mobile HIV prevention app to Black/African American, Hispanic/Latino, other gay and bisexual men, and transgender women. It also aims to assess the most cost-effective ways to recruit men and transgender women for HIV testing. The study, for which follow-up for all participants was completed in February 2022, will also examine the impact of these interventions on PrEP uptake, STI testing, and engagement in HIV prevention and social services.
Together-TakeMeHome HIV self-testing pilot program: CDC launched its first-ever direct-to consumer internet-based distribution program, TogetherTakeMeHome, to provide 100,000 free HIV test kits to anyone who requested one with a focus on Black/African American and Hispanic/Latino gay and bisexual men, transgender women, and Black/African American cisgender women. This large-scale distribution of HIV self-tests was implemented from February 4, 2021 through October 11, 2021, with a goal of distributing 100,000 HIV tests within 18 months. The program distributed the FDA-approved OraQuick in-Home HIV Self-Test through an online ordering portal built upon the existing TakeMeHome site from Building Healthy Online Communities (BHOC) . CDC also supported the distribution program by designing and launching a marketing campaign that expanded the efforts already being implemented by its Let's Stop HIV Together campaign. The lessons learned from this program will inform CDC's future self-testing strategies.
Providing guidance on HIV self-testing
CDC develops public health guidance for its grantees and partners to ensure they can make well-informed decisions on how best to advance HIV prevention programs and services, including self-testing. Real-time guidance: In the early months of the COVID-19 pandemic, CDC published Dear Colleague Letters with guidance101 for health departments, CBOs, and other partners on how to supplement their HIV prevention efforts by expanding their support for HIV self-testing services, especially where face-to-face testing services were disrupted. This guidance ensured that people could continue to be tested for HIV in compliance with stay-at-home orders and social distancing practices. This guidance also included information to help health departments use HIV self-testing services to support people on PrEP.
Clinical guidelines development: In addition to its March 2016 guidelines for providers on implementing HIV testing in nonclinical settings, which includes recommendations on HIV self- testing, CDC is currently developing expanded clinical guidelines on HIV self-testing.
Convening partners and sharing best practices
To expand the knowledge base and improve the implementation of HIV self-testing, CDC works in collaboration with its partners to share best practices for self-testing programs. Through funding provided by CDC, NASTAD recently convened a four-part webinar series, Self-Testing Strategies for HIV Testing and PrEP Access, to provide technical assistance for organizations planning to or currently implementing HIV self-testing programs. The webinars highlight models and innovations from health departments already implementing HIV self-testing programs.
CDC also provides technical assistance to its funded grantees through its Capacity Building Assistance program. Through this program, the New York City Department of Health and Mental Hygiene convened a webinar on its Home HIV Test Giveaway program, which provides detailed information to other health departments and CBOs that want to establish similar programs. 102Also through this program, Denver Prevention Training Center and Washington University in St. Louis developed a summary report outlining best practices for self- test program protocols that also provides lessons learned from health departments and CBOs that implemented self-testing programs during the COVID-19 pandemic.103 CDC includes national and local self-testing options on gettested.cdc.gov and disseminates this information through the National Prevention Information Network (NPIN) testing locator tools.
Two types of self-tests: Know the difference
To ensure HIV self-testing programs are as effective as possible, it is important to understand the difference between the two types of tests that allow a person to test at home or in a private location, the benefits of each, and when each is appropriate to use.
A rapid self-test is done entirely at home, or in a private location, using an oral swab and can produce results within 20 minutes. Rapid self-test kits can be purchased at pharmacies and online and may be available free or at low cost from health departments and community-based organizations (CBOs).
A mail-in test includes a specimen collection kit that contains supplies to collect dried blood from a fingerstick at home or other private location. The sample is then sent to a lab for testing and the results are provided by a healthcare provider. Mail-in tests can be ordered online. Healthcare providers can also order mail-in tests for their patients.
The path forward
The COVID-19 pandemic has shown how critical HIV self-testing services are to sustaining momentum to end the HIV epidemic. State and local health departments and CBOs have quickly shifted gears to ensure continuity of testing services through innovative engagement strategies and strategic partnerships. They are learning lessons that can advance HIV prevention efforts and improve access to services even after in-person services return to pre-pandemic levels.
Collaboration and action by diverse stakeholders can help sustain and build on this important progress in HIV testing, treatment, and prevention:
Federal health agencies can collaborate and coordinate across agencies to promote HIV self-testing along with telehealth services and leverage platforms and infrastructure used during the COVID-19 pandemic for the HIV response. They can also conduct research to advance the implementation of self-testing and self-testing technologies.
State and local health departments can expand HIV testing services to include the use of HIV self-test kits; connect clients who have used self-tests to prevention and treatment services; raise awareness about HIV self-testing; and train providers and organizations on how and when to use self-test kits.
Community-based organizations can continue to deliver HIV self-testing services and work with health departments and other partners to promote and expand the use of self-testing. They can also engage with communities disproportionately affected by HIV to encourage self-testing and follow up with clients who have used self-tests to link them to prevention and treatment services.
Healthcare providers can adopt CDC's HIV testing recommendations; order HIV self-tests for their patients, as appropriate; and connect clients who use rapid self-tests to prevention and treatment services.
Elected and community leaders can speak boldly about the importance of HIV testing, including self-testing, as the first step for both prevention and treatment and work with their communities to reduce HIV-related stigma.
Everyone can take steps to protect their health, including getting tested for HIV and accessing and staying engaged in care so they stay healthy and prevent further transmission.
Spotlight: Local HIV self-testing programs
There are many ways to expand HIV self-testing programs. Organizations around the country are thinking creatively about partner engagement and marketing strategies. Examples include:
Through CDC's flagship funding program for health departments, the Virginia Department of Health has launched a program to increase self-testing uptake among people who cannot or are reluctant to get tested in healthcare settings. The health department advertises the self-tests on its website, social media, and dating apps and mails them to eligible clients who request one. They also supply self-test kits to CBOs for further distribution. The program has successfully reached clients that have never been tested or have not been tested in the previous year and has reported impressive linkage to care outcomes: 88% of people who tested positive through the program were linked to care within 30 days.
Another innovative collaboration to advance HIV self-testing is the TakeMeHome program, developed by Building Healthy Online Communities (BHOC) in partnership with NASTAD and Emory University. The program offers rapid self-tests at no cost to people in participating jurisdictions and advertises the self-tests through dating apps. The program began as a pilot in March 2020; results suggest that it has successfully reached people who could benefit most from HIV care services, such as gay and bisexual men, and a high proportion of people who had not previously tested for HIV. Seventeen state health departments currently participate in the TakeMeHome program.
Legacy Community Health, a federally qualified health center in Houston, Texas, launched a self-testing program during the COVID-19 pandemic to provide access to HIV testing services outside of a clinic. Clinic counselors hold a telehealth screening for self-test eligibility and schedule virtual follow-up appointments for clients to take the self-test with a counselor on video who can provide immediate counseling and linkage to confirmatory testing and HIV care or PrEP, depending on the test result. This program has enabled Legacy Community Health to continue to provide critical HIV prevention and treatment services at pre-pandemic levels.
Today, powerful HIV prevention and treatment tools can keep people healthy and help end the HIV epidemic. Combining these tools in a status neutral approach can help people maintain their best health possible, while also improving outcomes in HIV prevention, diagnosis, care, and treatment. A status neutral approach to HIV-related service delivery aims to deliver high-quality, culturally affirming health care and services at every engagement, supporting optimal health for people with and without HIV. This approach is especially important now to reduce the unacceptably high number of annual HIV infections and help close the persistent gaps along the HIV prevention and care continuum, which indicate that not enough people are being engaged or retained in HIV prevention and treatment.
Many barriers may keep people from being engaged in HIV care
- HIV testing, treatment, and prevention services are often offered separately, can be challenging to navigate,and further emphasizes a division between people with HIV and people who could benefit from prevention.
- Separating HIV services from other routine healthcare misses opportunities to engage people in HIV testing, prevention, and treatment when they seek sexual health or other non-HIV-focused services.
- Providing critical support services—like housing, food, and transportation assistance—is essential to keeping someone in ongoing care, but these services are not necessarily offered alongside what are considered "traditional" HIV care and prevention services.
- Stigma embedded in the experience of many people seeking HIV treatment and prevention services can stop people from visiting health care providers labeled as "HIV" or "STD" clinics.
- Everyone has implicit biases that affect their perceptions of others. The HIV care or prevention services someone receives may be affected by healthcare and other service providers' implicit biases on race/ethnicity, sexual orientation, gender identity, age, and other factors. These biases, in some cases, may be why a person does not return for care and services.
Many HIV prevention experts believe a status neutral approach can help improve care and service provision and eliminate structural stigma by meeting people where they are, offering a "whole person" approach to care, and putting the needs of the person ahead of their HIV status. The status neutral approach aims to advance health equity and drive down disparities by embedding HIV prevention and care into routine care. Integrating HIV prevention and care with strategies that address social determinants of health can help reduce barriers to accessing and remaining engaged in care.
The status neutral approach also aims to increase efficiency, since the clinical and social services that prevent or treat HIV are nearly identical and can be unified in a single service plan rather than different plans based on an individual's HIV status. Adopting a status neutral approach is one way to help deliver better prevention and care and ultimately decrease new HIV infections and support the health and quality of life of people living with HIV in the United States.
Understanding status neutral HIV care
The status neutral framework provides care for the whole person by offering a "one-door" approach: people with HIV and people seeking HIV prevention services can access treatment, prevention, and other critical services in the same place. Normalizing HIV treatment and prevention helps to destigmatize both. In a status neutral approach to care, a provider continually assesses and reassesses a person's clinical and social needs. The goal is to optimize a person's health through continuous engagement in treatment and prevention services without creating or deepening the divide between people with HIV and people who could benefit from prevention.
A status neutral approach is unique because both of the harmonized pathways promote continual assessment of each person's needs and ongoing engagement in HIV prevention and care, including access to support services, for anyone who could benefit from them.
Status neutral HIV service delivery is:
- Healthcare that encompasses HIV testing, treatment, and prevention services.
- HIV treatment and prevention that is offered alongside other local medical healthcare services frequently used by the community—for example, sexual health, transgender and other LGBTQ-focused care, healthcare for people who use drugs, and general primary care.
- Service delivery that recognizes and includes broader social services that support the path to optimal HIV and other health outcomes—like housing, food, transportation, employment assistance, harm reduction services, and mental health and substance use disorder services—regardless of the HIV status of the people seeking care.
- Culturally affirming, stigma-free HIV treatment and prevention, delivered by supportive and accepting providers who have been trained to recognize and address implicit racial/ethnic, sexual orientation, and other biases (thoughts and feelings that providers are not consciously aware of), and provided in settings that consider and prioritize a positive experience for the person seeking services.
Status neutral service begins with an HIV test—the pathway to prevention and treatment. In a status neutral approach, an HIV test spurs action regardless of the result by recognizing the opportunity created by a negative or positive result for an individual to achieve better health:
- If a person receives a negative HIV test result, the provider engages the person in HIV prevention and offers powerful tools that prevent HIV, such as pre-exposure prophylaxis (PrEP). The prevention pathway emphasizes a consistent re-evaluation of the engaged person to match prevention and social support strategies to the individual's needs. Being engaged in such preventive services also means expedited connection to HIV care in the event of a new positive HIV test result. Condoms and harm reduction services are also an important part of this prevention pathway, especially for people who are not ready or eligible for PrEP.
- If a person receives a positive HIV test result, the provider offers a prescription for effective treatment to help them become virally suppressed and maintain an undetectable viral load as well as other clinical and support services to help support general health and achieve a high quality of life. Studies have shown that people with an undetectable viral load do not transmit HIV to their sexual partners, this is often referred to as "U=U."
Why a status neutral approach is needed
Health departments implementing models of status neutral HIV care have reported benefits such as:
- Decreasing new HIV infections. A status neutral approach to care and service delivery means that regardless of HIV status, people have access and support to stay on highly effective public and personal health interventions like PrEP and HIV treatment. When people are supported to fully use these interventions, the outcome is the same—HIV infections and other infections are identified, prevented, and treated. For example, New York City's status neutral approach to HIV prevention and care, first introduced in 2016, contributed to annual declines in new HIV diagnoses thereafter. New York City saw a 22% decrease in new HIV diagnoses from 2016 to 2019.
- Supporting and enabling optimal health through continual engagement in comprehensive, "whole person" care. By offering HIV services alongside other local health care and social support services used by the community, HIV prevention and treatment can become part of the fabric of holistic care designed to meet the needs of each person. As their needs evolve, a person can be seamlessly connected to new services. Potential outcomes include improved HIV care, as well as better overall health and social stability for every individual. For example, Chicago has created comprehensive status neutral health homes that offer the same services to people with HIV and people who could benefit from prevention services. Services include primary care, medications, care coordination, and behavioral health.
- Opportunities for more efficient service delivery. Parallel services and structures historically created for people with HIV or people who could benefit from prevention services can impede the most efficient use of resources. This can also inadvertently hinder connection to care by maintaining stigmatizing structures in health care. Identifying opportunities to resolve these divisions allows for more streamlined and integrated care. Washington, D.C. has seen increased capacity and improved outcomes and engagement at organizations using a status neutral approach. Using this approach has increased viral suppression rates 3% across all funded jurisdictions and increased linkage to preventive services like PrEP and harm reduction for people who tested negative for HIV.
- HIV treatment and prevention services have not been fully used by all who need them: Only 66 percent of people with diagnosed HIV in the United States are virally suppressed. PrEP remains greatly underused—just 23 percent of the estimated one million Americans who could benefit are using the intervention. Stigma and structural barriers are major obstacles that deter people from seeking HIV prevention and care. People with HIV and people who could benefit from HIV prevention are not two distinct populations, but rather one group with similar medical and social service needs. Adopting a status neutral and "whole person" approach to people in need of prevention and care services can address these similar needs, along with HIV-related stigma.
- Improving health equity. The status neutral framework integrates HIV and prevention services to better address social determinants of health regardless of HIV status. The framework also encourages the delivery of culturally affirming care by ensuring providers recognize and address their implicit biases on issues like race, ethnicity, sexual orientation, or gender identity. These biases sometimes prevent people from returning for care and other services. Likewise, countering stigma is essential to ensure that people with HIV are not defined by their status, and that people seeking HIV prevention and care services are empowered to access these tools without facing judgment or being reduced to the result of a lab test. Addressing racial bias and stigma results in better care experiences for patients and increases the likelihood that they remain in care and stay healthy.
Spotlight: Status neutral HIV care in action
Here's how some jurisdictions across the country are integrating a status neutral approach into their HIV care services:
- Chicago: Integrating all HIV and sexually transmitted infection (STI) services. The Chicago Department of Public Health recently restructured its entire HIV services portfolio to adopt a status neutral approach. Based on feedback from its community members over a two-year community engagement process, the portfolio now integrates HIV and STI funding to deliver comprehensive care that links people to healthcare services like STI screening, substance use disorder treatment, mental health, housing, financial assistance, and psychosocial support in addition to HIV treatment and prevention. Anyone can access these services regardless of HIV status.
- New York City: Expanding sexual health and rebranding to reduce stigma. Stigma associated with HIV and STIs can prevent people from seeking care in STI clinics. To address this, the New York City Department of Health and Mental Hygiene rebranded its STI clinics as sexual health clinics and transformed services so that they fully meet clients' sexual health needs. These changes have resulted in more diverse populations visiting the clinic for care.
- Puerto Rico: Delivering affirming, trauma-informed care for transgender people. Centro Ararat in Ponce, Puerto Rico delivers integrated, tailored sexual health and primary care to the transgender community. The center's innovative clinic provides comprehensive, trauma-informed health services for transgender people alongside HIV and STI care. These services include hormone therapy and level testing, mental health services, support with name changes, and assistance finding trans-sensitive housing.
- Texas: Improving access to social services for all people. Achieving Together is the community plan to end the HIV epidemic in Texas. It lays out a vision for status neutral HIV care that supports all people in accessing services that meet their priority needs. This approach addresses social determinants of health, including housing, transportation, and food assistance, helps with insurance navigation, and increases access to mental health and substance use disorder treatment.
- Washington, D.C.: Eliminating HIV prevention and treatment barriers early. DC Health developed a status neutral approach through its regional early intervention services initiative, which supports engaging people early in HIV care and prevention services throughout the DC metropolitan area. The initiative has made strides in integrating prevention and treatment services, which previously operated independently, and consists of five pillars to promote equity and whole person health spanning HIV outreach, education, testing, and linkage to and retention in care.
What CDC is doing to advance status neutral HIV care
CDC is providing funding, conducting implementation science to improve programs, and partnering with organizations across the U.S. to support integrated, status neutral approaches to HIV care:
- Encouraging grantees to deliver integrated services. Several of CDC's major funding programs provide flexible resources for health department and community-based organization (CBO) partners to deliver integrated HIV prevention services. Additionally, CDC encourages health departments that receive funding through CDC's flagship prevention and surveillance program to use these resources to support programs that adopt status neutral approaches to HIV prevention and treatment.
- Ending the HIV Epidemic initiative implementation: In July 2021, CDC awarded the second major round of EHE funding — approximately $117 million — to health departments representing 57 prioritized jurisdictions to scale up focused, local efforts designed to address the unique barriers to HIV prevention in each community. CDC encourages grantees to coordinate with STD and viral hepatitis programs, LGBTQ health centers, criminal justice and correctional facilities, and other providers to deliver HIV services. In addition, the new program provides funding to a subset of jurisdictions to strengthen HIV testing, prevention, and treatment services at dedicated STD clinics.
- High-impact HIV prevention through CBOs and health departments: CDC funded more than 90 CBOs to develop high-impact HIV prevention programs and partnerships, beginning in 2021. These CBOs are required to create HIV programs with the greatest potential to address social and structural determinants of health. CBOs can use CDC funding to help clients navigate essential support services. The program will also support integrated screening for STIs, viral hepatitis, and TB, and referrals for subsequent treatment.
- Ending the HIV Epidemic initiative implementation: In July 2021, CDC awarded the second major round of EHE funding — approximately $117 million — to health departments representing 57 prioritized jurisdictions to scale up focused, local efforts designed to address the unique barriers to HIV prevention in each community. CDC encourages grantees to coordinate with STD and viral hepatitis programs, LGBTQ health centers, criminal justice and correctional facilities, and other providers to deliver HIV services. In addition, the new program provides funding to a subset of jurisdictions to strengthen HIV testing, prevention, and treatment services at dedicated STD clinics.
- Conducting implementation science. CDC is conducting a pilot program to evaluate a project designed to deliver status neutral HIV services to transgender people. The pilot will support transgender healthcare providers and CBOs in integrating HIV, STI, viral hepatitis, and harm reduction services alongside transgender-specific healthcare. The pilot aims to establish best practices for creating a "one-door" approach for testing and other interventions that can improve the health of transgender people.
- Building partnerships. CDC is working with other federal agencies and organizations focused on issues that intersect with HIV and affect health outcomes, like sexual health, mental health, housing, incarceration, employment, and substance use disorder to advance status neutral approaches to HIV prevention and care. For example, the HIV National Strategic Plan incorporates the status neutral framework, creating opportunities to improve systems so they support the provision of status neutral services in the national HIV response. These partnerships will enable the sharing of knowledge and best practices that translates to better implementation science, programs, and services. These partnerships can also support better integration of programmatic efforts in communities.
The way forward
It will take time for a status neutral approach to be adopted across the country. Federal agencies, state and local health departments, healthcare providers, and CBOs can take steps now to begin promoting and integrating this approach into their programs and service delivery models if appropriate for their organization or jurisdiction and supported by their community:
- Federal health agencies can provide training, support, and technical assistance to state and local health departments, healthcare providers, and CBOs looking to implement status neutral HIV care. They should prioritize strategies that support front-line providers in more easily creating and implementing status neutral programs. They should also promote cross-agency collaboration to integrate HIV treatment and prevention services over time with other primary care, behavioral health, and social services.
- State and local health departments can review their current funding and care delivery models to further integrate HIV into STI and primary care settings, especially community health centers, sexual health clinics, and health access points for people who use drugs. They should also identify ways to braid funding from multiple sources, and work with CBOs and other providers to gather and share best practices and lessons learned in implementing status neutral HIV care.
- Healthcare providers and CBOs can offer dynamic, supportive care that integrates culturally affirming messages and prioritizes each patients' individual needs. They can consider providing non-HIV services that can improve patients' overall health, such as STI and viral hepatitis screening, mental health care, and substance use counselling, as well as linkage to social services. They can also participate in regular trainings on recognizing and addressing implicit racial/ethnic and other biases.
HIV prevention profiles
The HIV prevention profiles highlight the current HIV prevention challenges, opportunities, and investments in select jurisdictions across the nation. The profiles linked below include Ending the HIV Epidemic in the U.S. initiative jurisdictions. If you have questions about these or other jurisdictions, please email dhppolicy@cdc.gov.
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