Recent US Centers for Disease Control and Prevention Activities to Reduce HIV Stigma

Abstract

HIV stigma affects many persons living with HIV in the United States, and reducing stigma is central to the US Centers for Disease Control and Prevention’s (CDC) mission to promote health and prevent HIV transmission. To this end, CDC funds and implements programmatic activities, research, communication campaigns, and monitoring through data collection and public health surveillance. Centers for Disease Control and Prevention-funded programs have developed promising interventions and educational materials for reducing HIV stigma. Research conducted by CDC staff and their collaborators have made important contributions to the scientific literature on stigma, which have informed current CDC programmatic efforts, including public education activities and social marketing campaigns. By monitoring HIV stigma in multiple populations, CDC can evaluate the population-level effectiveness of stigma-reduction efforts and identify key populations in need of support and intervention. This article describes these and other recent CDC efforts to address HIV stigma, and discusses new strategies with the potential to further reduce stigma.

What Do We Already Know about This Topic?

HIV stigma affects many persons living with HIV (PWH) in the United States, and reducing stigma is central to the US Centers for Disease Control and Prevention’s mission to promote health and prevent HIV transmission.

How Does Your Research Contribute to the Field?

This manuscript describes the US Centers for Disease Control and Prevention’s recent HIV stigma-reduction activities and identifies areas for enhanced efforts and new strategies with the potential to further reduce HIV stigma.

What Are Your Research’s Implications toward Theory, Practice, or Policy?

Although the US Centers for Disease Control and Prevention’s HIV stigma-reduction activities have been wide ranging, there are multiple opportunities for improvement and collaboration with key stakeholders is essential for the success of these efforts.

Introduction

Stigma is a social process whereby persons with certain attributes are perceived as different from and less valued than others, and often results in status loss and discrimination.^1,2 HIV stigma can manifest in multiple domains (eg, among persons with HIV [PWH], among communities not affected by HIV, enacted in laws and policies, and in organizations that serve PWH). HIV stigma affects a substantial proportion of PWH in the United States, as well as globally,³ and reducing HIV stigma is national HIV prevention goal.⁴ The harmful effects of HIV stigma for PWH are well established; stigma is associated with social isolation,⁵ depression,^6-8 and poor physical and mental health.^7,8 As such, HIV stigma is an important social determinant of health for PWH. Further, reducing stigma is also an important component of HIV transmission prevention because stigma may lead to avoidance of HIV status disclosure to sexual partners^6,9 and increased HIV viral load due to its relationship with delayed HIV testing,¹⁰ lower engagement in medical care,¹¹ and poor adherence.^8,12,13

HIV stigma reduction is central to the US Centers for Disease Control and Prevention (CDC), Division of HIV/AIDS Prevention’s mission to promote health, and prevent HIV transmission in the United States. To this end, CDC funds and implements programmatic activities, research, communication campaigns, and monitoring through data collection and public health surveillance activities. This article describes CDC’s current efforts to address HIV stigma and discusses new strategies that have the potential to further reduce stigma and achieve national HIV prevention goals.

Programmatic Activities

Public health programs demonstrate the financial and human resource investments that CDC and other public health entities make in order to address health problems, and their underlying determinants, that affect vulnerable communities.¹⁴ We highlight a few recent examples of CDC’s programmatic stigma-reduction activities.

Care and Prevention in the United States Demonstration Project

Care and Prevention in the United States,¹⁵ a 2012 multifederal agency demonstration project, included a focus on addressing the social, economic, clinical, and structural factors influencing HIV testing, care, and prevention. Outcomes included a social marketing intervention for medical settings, Protecting Our Patients,¹⁶ which includes “storyographies” in which PWH share their stigmatizing experiences in health care settings, and focuses on teaching medical providers and clinic staff how to provide care and services without stigmatizing persons living with, or at risk for acquiring, HIV. Implementation began in areas of high HIV morbidity in Chicago with the intention of dissemination to other jurisdictions over time, and evaluation is ongoing.

Capacity-Building Assistance Providers

Other programmatic efforts involve the work of CDC’s capacity-building assistance (CBA) providers.¹⁷ Capacity-building assistance providers work to enhance the HIV prevention workforce’s ability to deliver the knowledge, skills, technology, and organizational infrastructure needed for individuals and agencies to prevent HIV. Several CBA providers conduct trainings, deliver technical assistance, and develop educational materials to assist public health partners with stigma reduction activities.

One CBA provider has developed an e-learning course¹⁸ for new front-line HIV prevention workers that teaches fundamental principles of HIV prevention. The course includes information on the link between stigma and HIV acquisition and how HIV stigma intersects with other forms of stigma, like homophobia and racism, to disproportionately increase HIV risk. Another CBA provider developed a tailored, freely accessible¹⁹ e-learning course to enhance providers’ capacities to implement CDC prevention recommendations.²⁰ These courses review the links between stigma and HIV outcomes and transmission, and encourage learners to communicate with PWH in a manner that is nonjudgmental, affirming, and supportive of their comprehensive health needs. Additionally, the National CBA Provider Network Resource Center produced a 6-minute video on HIV stigma for public health and medical professionals,²¹ and other CBA providers’ stigma-focused webinars, cultural competency trainings, conference presentations, and printed materials are web-accessible at no cost.^19,22

Research on HIV Stigma

Centers for Disease Control and Prevention has supported research on the effects of stigma for PWH in order to expand the knowledge-base and inform the development of interventions and programs to reduce stigma. In this section, we highlight a few recent examples.

One study used qualitative and quantitative methods to examine the relationship between perceived stigma and increased HIV transmission risk behaviors, increased substance use, decreased serostatus disclosure, and poorer mental health outcomes among gay, bisexual, and other men who have sex with men (MSM).^5,23 Results suggested that HIV-positive men perceived that HIV-negative men held stigmatizing attitudes toward HIV-positive men; for example, 62% agreed there was discrimination against PWH among MSM. These perceptions were related to poorer mental health outcomes, use of avoidant coping strategies, and suicidal ideation among HIV-positive men. Men in the study who perceived high levels of HIV stigma were more likely to seek sex partners in venues that facilitated anonymous sex, which potentially increases the risk of HIV transmission.

A second quantitative study⁹ described levels of HIV stigma observed among homeless and unstably housed PWH. Researchers measured 2 dimensions of stigma: internal stigma (internalization of HIV stigma among PWH) and perceived external stigma (HIV stigma beliefs held by members of PWH’s communities). Perceived external stigma was associated with nondisclosure of HIV status to social networks members. Internal stigma was associated with nondisclosure to sex partners and increased drug use.

Finally, one study used qualitative methods to explore HIV vulnerability²⁴ among young black/African American MSM.²⁵ HIV stigma-related themes emerged from the data: negative perceptions surrounding HIV and PWH, negative treatment of PWH, nondisclosure of HIV status, internalized stigma, sexual minority stigma, dissociation from HIV, and combating HIV stigma. Results showed that HIV stigma was a social factor negatively affecting young MSM, leading to nondisclosure of HIV status, not inquiring about a partner’s HIV status, and discriminatory treatment including social ostracism and low familial social support.

Stigma Reduction Communication Campaigns

Centers for Disease Control and Prevention develops and disseminates numerous HIV-related health communication and social marketing materials and interventions with the aim of strengthening HIV prevention and care. A recent HIV prevention campaign focused specifically on increasing awareness of and reducing HIV stigma.

First launched in 2012, the Let’s Stop HIV Together campaign²⁶ raises awareness about HIV and its effect on the lives of all Americans. It seeks to reduce HIV stigma by showing that PWH are real people. The images and stories in the campaign present the message that HIV affects persons of all ages, genders, races, ethnicities, and sexual orientations. The campaign uses traditional, online, and social media to encourage people to inform themselves about HIV, take an HIV test, and support PWH. Promotional materials, a guide to talking about HIV, and a stigma fact sheet are available to the public at no charge. The campaign’s public service announcements have been viewed over 4.3 million times online and over 4.1 billion times on television, and reflect the United States’ commitment to stigma reduction.²⁷

Monitoring HIV Stigma

Another key function of CDC and its partners is public health surveillance.²⁸ Centers for Disease Control and Prevention funds surveillance systems and special studies that include monitoring of HIV stigma, with the aim of providing information about the prevalence of HIV stigma and its association with behaviors and clinical outcomes that affect HIV care and prevention.

HIV Stigma among PWH

Since 2011, CDC has monitored HIV stigma among PWH through the Medical Monitoring Project (MMP),²⁹ a surveillance system designed to produce representative estimates of the clinical and behavioral characteristics of HIV-positive adults in the United States. Medical Monitoring Project data indicate that internalized HIV stigma³⁰ among PWH receiving HIV care is common; over 79% of HIV-positive patients reported experiencing at least one aspect of HIV stigma.³¹ Since 2015, MMP has monitored stigma among all HIV-diagnosed adults using a more comprehensive scale that captures 4 dimensions of stigma: personalized stigma, disclosure concerns, negative self-image, and public attitudes about people with HIV.³² This scale will be used to monitor temporal changes in HIV stigma among PWH in the United States.³³

HIV Stigma within Communities Highly Affected by HIV

Since 2011, CDC-funded National HIV Behavioral Surveillance³⁴ has monitored HIV stigma among populations at increased risk for HIV infection via anonymous behavioral interviews and HIV testing in cities with high HIV prevalence. Interview questions^35,36 assess perceptions of community norms regarding discrimination, social isolation, and shaming toward PWH. Analyses of 2012 to 2014 data indicate that nearly half (49.8%) of MSM, and more than two-thirds of persons who inject drugs and heterosexuals (65.6% and 69.7%, respectively) believed that most people in their city would discriminate against someone with HIV (CDC, unpublished data).

HIV Stigma among the General US Population

Beginning in 2018, CDC will fund monitoring of stigmatizing attitudes toward PWH among the US adult population through the General Social Survey, which collects nationally representative trend data to monitor attitudes, behaviors, and attributes. Centers for Disease Control and Prevention proposed questions for the 2018 survey period that will capture stigmatizing attitudes toward PWH and their opinions about the morality of PWH.

HIV-Specific Criminal Laws

In 2014, CDC and the Civil Rights Division at the US Department of Justice published an assessment of state HIV-specific criminal laws and examined their implications for public health practice.³⁷ Results showed that many laws criminalize behaviors that carry little risk for HIV transmission, and few consider factors that greatly reduce transmission risk such as condom use, antiretroviral therapy (ART) use, and pre-exposure prophylaxis (PrEP). Given the potential of these laws to perpetuate HIV transmission misinformation and stigma toward PWH, the authors encouraged states to reexamine their laws.

Discussion: New Opportunities and Next Steps

The scope of CDC’s efforts to address HIV stigma in the United States has been wide-ranging. However, there is a need for additional efforts. These could include strategies that incorporate stigma reduction activities into HIV prevention and care work and incentivize their implementation. Future research could seek to quantify the impact of antistigma efforts on reductions in sexual transmission risk behavior, nonengagement in care, and nonadherence to ART. Further, CDC-led communication campaigns and monitoring efforts could collaborate to evaluate the effects of antistigma campaigns on decreasing stigma nationwide. Monitoring gaps include a need to measure stigma in non-HIV-focused medical settings, and to assess medical mistrust among PWH and cultural competency among providers and medical staff.

Collaborating with PWH, state and local partners, and other stakeholders is key to ensuring that stigma-reduction efforts reach the right communities and programs are appropriately tailored to unique circumstances in local jurisdictions. In addition, the intersectionality of HIV stigma with stigma related to other factors such as sexual orientation, gender identity, or race/ethnicity must be considered in order to inform efforts to monitor, develop, and evaluate programs that will reduce stigma. Because stigma affects behaviors and access to services across the HIV care continuum—from testing, to engagement in care and adherence to ART—effective strategies that address stigma reduction may yield wide-ranging benefits.

Advances in HIV treatment and prevention provide new opportunities for CDC’s efforts to address stigma. For example, PWH who initiate early antiretroviral treatment now have life spans approaching that of the general population.³⁸ As CDC continues to disseminate science-based information on HIV treatment and transmission potential to patients, providers, and the general public, this may reduce the false and stigmatizing notion of HIV as a “death sentence.” Enhanced promotion by CDC and others of new models of care based on “Treatment as Prevention” may contribute to stigma reduction by relieving PWH’s anxiety about HIV transmission to others, as well as their partners’ fears of HIV acquisition. Finally, as CDC promotes the uptake of PrEP, this may hold promise for reducing stigma, as it empowers individuals to manage their own health and may reduce concerns about HIV transmission.³⁹

Conclusion

Centers for Disease Control and Prevention will continue its efforts to fund and implement activities that address HIV stigma as a means of promoting the health of PWH and decreasing HIV transmission. New opportunities for stigma reduction through existing initiatives such as treatment as prevention and PrEP may be promising avenues for future efforts. Additional research can determine the best combination of effective interventions for addressing HIV stigma. Efforts must include partnerships with key stakeholders, particularly affected communities, and should increase awareness of the role of stigma in HIV-related disparities.