AN INSIGHT INTO ORGANIZATIONAL HIV STIGMA & DISCRIMINATION
Much has been done to reduce discrimination at an organizational level through anti-discrimination laws, but these efforts vary across countries. More needs to be done to ensure that legislative frameworks are being implemented and that stigma and discrimination are effectively addressed.
What did Positive Perspectives discover about organizational stigma?1
- More than a third (39%) of people living with HIV surveyed said that they had experienced institutional stigma in the past year (e.g., being denied jobs, visas, health services or education due to their HIV status).
- Nearly a quarter (24%) of those surveyed worried that their HIV status will change their relationship with their primary care provider.
- 15% of the people living with HIV surveyed admit to worrying all/a lot of the time that people at work will find out they have HIV, and 11% say they worry all/a lot of the time about losing their source of income if people at work find out.
Defining organizational-level HIV stigma
Organizational HIV stigma is stigma or discrimination that occurs during interactions that people living with HIV have with institutions, such as workplaces, health services and religious or educational institutions (e.g., schools, colleges, etc.). Organizational stigma can also include anticipation of stigma and discrimination.
These interactions are often with a person’s doctors, dentists, healthcare professionals, teachers, religious leaders and tutors - interactions that should feel safe and secure, as opposed to stigmatizing.
“A dentist put on three pairs of gloves when he found out [I had HIV].”
HIV stigma and discrimination in healthcare
The fact that stigma and discrimination can impact willingness to be tested and/or seek care for HIV has been observed in many settings and is recognized by both the World Health Organization and UNAIDS as a barrier.
People living with HIV report experiencing stigma within the healthcare setting and from healthcare professionals. That’s why it is now widely accepted that, to improve access to healthcare services in the wider community setting, social stigma must be tackled.
Research has shown that healthcare professionals in some countries may seek to minimize contact with people living with HIV, delay or deny them treatment, demand additional payment for services and/or isolate people living with HIV from other patients.
“During my pregnancy, I was only offered a vaginal examination twice. A gynecologist rejected me completely.”
HIV stigma and discrimination in the workplace
Stigma and discrimination remain a barrier to employment for people living with HIV. It is thought to be felt most significantly by those who are unemployed and seeking work, but it is also a concern for those in work in terms of job retention and progression.
Employment rates for people living with HIV are consistently found to be below national averages.
This is despite evidence that – with the right treatment and support – someone diagnosed with HIV in recent years should have a similar, if not the same, ability to work as someone without HIV.
The survey insights covered a wide range of potential discriminatory practices, from people feeling they must hide their status in the workplace, to issues affecting the ability to travel beyond the EU for work or having trouble finding a dentist.
However, the survey also demonstrated that the proportion of people who worried that they would lose their job if they disclosed their HIV status to their employer was far higher than the proportion who faced discrimination as a consequence of disclosing their HIV status, highlighting a potential issue with anticipatory stigma in the workplace.
- Implement services to give equal access to work, education and healthcare services
Local services should be provided by government, the public sector and employers to support people living with HIV gain access to work, education and healthcare services that are tailored to their needs.
- Zero discrimination in the organizational setting
Specific measures to prevent HIV-related discrimination and stigma should be embedded within broader anti-discrimination written policies, practices and culture in organizational settings, including in the workplace, in education and in healthcare. They should be monitored and implemented with zero tolerance for discrimination.
What can be done?
To support people living with HIV in work and/or education, and particularly in the healthcare setting, it is key that national and local governments, the legal system, employers, apprenticeship programs and educational establishments all work in parallel to ensure that:
- Discrimination is not tolerated
- Proactive education is in place for employers and employees, and flexible working is available, where possible
- People living with HIV who are not working or in school have access to services and trained professionals who understand, and have empathy for, the specific needs of people living with HIV seeking education and/or employment
- Access to healthcare/support services is not restricted and healthcare providers are trained in addressing HIV-related stigma
Our work toward combating organizational stigma
Our industry-leading Positive Action programs, initially created by GSK and now run through ViiV Healthcare, have been tackling HIV stigma for more than 20 years - working with communities most vulnerable to HIV with efforts spanning innovations in HIV care services, including initiatives aimed at preventing HIV, building capacity in grassroots communities and addressing HIV stigma and discrimination.
Through Positive Action Challenges, Community Strategic Initiatives and Breakthrough funding streams, we identify and fund innovative strategies to link priority populations to stigma-free services.
In collaboration with Implementation Science we seek to understand which interventions are effective in addressing HIV-related stigma in healthcare settings.
Through partnerships and campaigns, we are actively contributing to fighting HIV stigma and discrimination. Launched in June 2020, Gareth Thomas started the Tackle HIV campaign in partnership with ViiV Healthcare and the Terrence Higgins Trust (THT) after hearing firsthand how deeply stigma and self-stigma affect people living with HIV. ViiV Healthcare is also an active participant in the THT Back to Work program, supporting people living with HIV to reintegrate them into the world of work.
A Spotlight on Interpersonal and Community HIV Stigma and Discrimination: Positive Perspectives Findings
It is a fundamental human instinct to want a sense of family, opportunities to socialize and a feeling of belonging to a community (or multiple communities such as family, faith or interest-based). But the stigma related to HIV can often get in the way of these needs, putting barriers between friends, families and communities.
HIV self-stigma can manifest itself in many ways - from worrying about how a friend might feel if you shared a drink with them to fear of your HIV status being known in the workplace.
While it may now be commonly accepted that a lack of respect for human rights can accelerate the HIV epidemic, this isn’t always reflected in the policies and institutions that shape the lives of people living with HIV.