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Stigma Associated With HIV

Despite advances in HIV care and treatment and HIV-awareness campaigns, negative attitudes and judgments directed at people living with HIV (PLWH) continue to create barriers to those seeking care.1 Fear of stigma and discrimination related to sexual orientation, gender identity, race, age, sex work, or socioeconomic standing may delay people from getting tested for HIV, practicing prevention methods, and adhering to antiretroviral therapy (ART). Unfortunately, high-risk populations are often the ones most in fear of seeking quality treatment in the healthcare setting and beyond.

According to one global survey of 1111 PLWH in 2016, 82% had experienced stigma related to their HIV status in the previous 12 months.2 Additionally, 2011-2016 survey data from The People Living with HIV Stigma Indexa decentralized data collection resource used in more than 90 countries to document stigma and discrimination experienced by PLWH around the world—showed that roughly one in five PLWH avoided seeking quality healthcare due to their HIV status.1

In healthcare settings, stigma and discrimination associated with HIV may discourage people from1:

  • Getting tested and knowing their HIV status
  • Sharing their HIV status with partners, communities, and healthcare professionals
  • Initiating HIV care and treatment early on before the virus and symptoms progress
  • Adhering to treatment, which is necessary to protect both individual and public health

Did you know?

People living with HIV who perceive high levels of stigma are 2.4 times more likely to delay seeking HIV care.1

Drivers of stigma and discrimination are numerous: community attitudes and societal prejudices, misinformation, and fear.These drivers can manifest into violence against key populations; discrimination in healthcare, housing, and employment; ostracism by families and communities; and internalized stigma—all of which may lead to avoidance of health services and nondisclosure.3

Stigma Associated With HIV Has Many Faces4

Form

Internalized stigma

Stigma in healthcare

Workplace stigma

Household or community stigma

Governmental stigma

Manifestation

May lead to shame and lack of confidence to seek medical care

May delay or hinder treatment

May cause social isolation and loss of income

May lead to loss of housing and sense of belonging

May cause societal alienation and exclusion

To close gaps in HIV care—and increase testing, treatment, and use of health services by all populations—UNAIDS recommends1:

  • Eradicating harmful laws and enacting protective laws
  • Educating people on their civil rights and empowering groups to address HIV discrimination
  • Training and supporting the healthcare community to deliver standardized, nondiscriminatory, confidential, patient-centric healthcare

“...every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity, or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.3

The US National HIV/AIDS Strategy, updated to 2020, also calls for an end to stigma and discrimination related to substance use, mental health, sexual orientation, gender identity, race/ethnicity, and sex work to increase access to HIV prevention, testing, and care.3

This includes3:

  • Recognizing that stigma exists and working to fight stigma to improve health outcomes of people living with HIV
  • Ensuring our laws and policies surrounding HIV are based on current scientific knowledge and are enforced to protect people living with HIV
  • Supporting research to measure stigma in the community and healthcare systems
  • Coordinating efforts between federal agencies, local health departments, and community-based resources to diminish discrimination in clinical settings
  • Joining governmental and institutional forces with HIV networks and service organizations to promote public leadership by diverse groups of people living with HIV
  • Supporting the roles of community- and faith-based organizations in educating and mobilizing their members, especially among LGBT individuals with HIV
  • Creating safe spaces where more people feel supported to get tested for HIV, to connect to and stay in HIV care, to adhere to treatment, and to disclose HIV status

The People Living With HIV Stigma Index documents information about the experience of people living with HIV related to stigma, discrimination, and their rights. The index can be utilized to record and compare stigma in communities around the world, measure changes in stigma over time, and provide an evidence base for policy change and programmatic interventions.

View findings at http://stigmaindex.org/united-states or download the user guide to consider implementing the index in your community.

References:

1. Confronting discrimination: Overcoming HIV-related stigma and discrimination in healthcare settings and beyond. UNAIDS website. http://www.unaids.org/en/resources/documents/2017/confronting-discrimination.  Published October 2, 2017. Accessed May 21, 2019.

2. The Positive Perspectives Survey Report: A view into the lives of people living with HIV. LivLife website. https://livlife.com/content/dam/cf-viiv/livlife/en_GB/FINAL_Positive%20Perspectives%20survey_Patient.pdf. Accessed May 21, 2019.

3. HIV/AIDS strategy for the United States: Updated to 2020. HIV.gov website. https://files.hiv.gov/s3fs-public/nhas-update.pdf. Published July 2015. Accessed May 21, 2019.

4. HIV stigma and discrimination. Avert website. https://www.avert.org/professionals/hiv-social-issues/stigma-discrimination. Published April 9, 2018. Accessed May 21, 2019.

HVUWCNT190023 June 2019

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