The Crucial Role of Reducing Stigma in Ending the HIV Epidemic

Recent years have seen great advances in the treatment and prevention of HIV, leading to a better quality of life and more options for people living with or affected by HIV. Despite this, discrimination and stigma are still major barriers to care in many countries, hampering progress towards ending the HIV epidemic. This World AIDS Day, we’re speaking up for health equity, and ensuring healthcare is available to everyone, without stigma or discrimination, regardless of their HIV status, background, gender, or where they live.  

What impact does stigma have in 2024? 

It’s hugely disheartening that in 2024, people living with HIV are still experiencing stigma in all areas of their life. Whether social stigma and feelings of isolation in local communities or social circles, or even discrimination in healthcare settings and educational institutions, all have an impact on access and continuation of care.(1) 

Moreover, many people living with HIV struggle with self-stigma, which includes feelings of self-blame and low self-worth.

A recent report from the Global Network of People Living with HIV found that almost 85% of individuals living with HIV have reported feeling some sort of internalized stigma in their daily lives, and shockingly nearly one third discontinued treatment due to this.(1)  

Another aspect that is often overlooked is stigma in the workplace. I recently had the opportunity to catch up with Kai Jonas at HIV Glasgow 2024 to discuss the effect of organizational stigma and discrimination on the careers and livelihoods of people living with HIV. 

These various forms of stigma have a substantial impact on people at risk of or living with HIV, leading to social exclusion, diminished self-esteem, and a reluctance to engage with healthcare by seeking testing, prevention, or treatment. As well as directly impacting individuals, stigma hinders public health initiatives and the global fight against HIV and AIDS by perpetuating misconceptions and fear around HIV.(1) 

What can be achieved by eliminating stigma? 

Stigma plays a substantial role in healthcare disparities. By reducing stigma, we can empower all people at risk of HIV to engage in preventative care (such as PrEP) and get tested, enabling early diagnoses and treatment, irrespective of their age, background, gender, or where they live.(2)  

For people living with HIV, reducing stigma can improve adherence to treatment and retention in care. Prompt treatment initiation and adherence to treatment not only benefits people living with HIV, but we also know that if someone has an undetectable viral load, they cannot sexually transmit HIV to others (U=U).(3,4)  

As stigma and discrimination can undermine public health initiatives aiming to end the HIV epidemic, improving education and reducing stigma will help foster community engagement, uptake, and success of these initiatives. By working together to tackle stigma, we can create a supportive, accepting, and empowering environment that significantly impacts both the mental health and quality of life of those affected. Reducing stigma is an essential component in the fight to end the HIV epidemic that must not be overlooked.(5)  

What is ViiV Healthcare doing to tackle HIV stigma? 

At AIDS 2024, ViiV Healthcare not only presented their latest findings, but also showcased interactive educational tools designed to raise awareness about HIV and ultimately tackle the root causes of stigma: 

• Chapters of Stigma – a virtual reality experience that allowed attendees to see the world through the eyes of a young Hispanic male, offering deep insight into the situations and feelings that are nearly universal among people living with HIV. ViiV plans to continue “Chapters of Stigma” by sharing additional perspectives of people living with HIV, aiming to reach healthcare professionals as well as a wider audience. 

• Interactive avatar “Luuk” – delegates were encouraged to ask ‘Luuk’ questions they had about HIV to increase awareness of U=U, empower people living with HIV and reduce fear, misunderstanding and stigma. 

ViiV’s community grant giving program – Positive Action – prioritizes strengthening healthcare systems and creating healthier communities. The program often hosts informal educational sessions at congresses, focusing on dispelling HIV myths and misconceptions, driving discussions and sharing best practices to highlight the importance of community engagement in effectively addressing HIV stigma, which is a significant challenge in many of the most impacted countries.  

Inspiring initiatives supported by ViiV 

Created in collaboration with Welsh rugby player and HIV activist Gareth Thomas, and with support from the Terrence Higgins Trust, Tackle HIV is dedicated to correcting misunderstandings and breaking down stigma using sports-based initiatives to showcase that HIV shouldn’t stop anyone from living the life they want. Recent initiatives have ranged from participation in the 2024 Royal Windsor Triathlon, to the Tackle HIV Myth Bus Tour which has popped up at universities across the UK and even the 2023 Rugby World Cup. At the World Cup, Gareth and ViiV, alongside French advocacy group AIDES, engaged with rugby fans and the public, and held a media event with key leadership figures, encouraging support among the international sports community.  

In all the important work being done to eliminate stigma, it is essential not to overlook marginalized groups who are often the most negatively affected: 

• The THRIVE project works to eliminate intersectional inequality across three key vulnerable populations (people who are aging, women, and migrants) by identifying vulnerable populations and providing key recommendations to better support these groups on their HIV journey.  

• ‘Being Seen’ podcasts explore the roles that culture plays in resolving how we see ourselves and how we are seen by others. Opening this discussion encourages the creation of more accurate cultural portrayals of queer and gay Black male experiences, with the aim of reducing stigma and challenging perceptions around living with HIV.  

But, it’s not just adults we need to consider. Our annual Youth and Community Summits bring together HIV advocates, public health partners, writers, and youth leaders from across North America to educate, engage, and foster collaboration within the HIV community. These summits create a forum for community-driven solutions to end the HIV epidemic, including a mentorship program pairing youth leaders with established trailblazers from the community to empower the next generation of leaders in the HIV community. See what ViiV’s Kimberly Smith had to say about the importance of including the community at our 2024 Youth and Community Summit held in Denver, Colorado.  

This World Aids Day, we continue to challenge stigma and discrimination   

We must continue to develop medicines that not only meet the ever evolving needs of each individual living with HIV and the HIV community, but also medicines that physicians are confident in, and that payers will support.  

However, our treatment and prevention efforts are futile if we do not eliminate the stigma, discrimination and misunderstanding that still surround HIV. By focusing on marginalized groups and empowering the next generation through education and community engagement, we can dismantle stigma, tackle health equity, and advance towards ending the HIV epidemic, ensuring no person living with HIV is left behind.  

👉 Learn more: 

• ViiV Healthcare  
• Chapters of Stigma 
• Positive Action 
• ViiV Healthcare’s Community and Youth Summits 

References:  

1. People Living with HIV Stigma Index 2.0. Global Report 2023. Available at: https://www.stigmaindex.org/wp-content/uploads/2023/11/PLHIV-Stigma-Index-Global-Report-2023-2.pdf (accessed November 2024) 
2. Babel RA, et al. AIDS Behav 2021;18:3574–3604 
3. World Health Organisation. People living with HIV with an undetectable viral load cannot transmit HIV sexually (2020). Available at : https://www.who.int/docs/default-source/searo/hiv-hepatitis/joint-moph-unaids-who-uu.pdf?sfvrsn=8378cd0_2 (accessed November 2024) 
4. Multinational Undetectable = Untransmittable (U=U) Call-To-Action. Prevention Access Campaign. Available at: https://preventionaccess.org/c2a/ (accessed November 2024) 
5. ViiV Healthcare. Breaking the Stigma Surrounding HIV (2024). Available at: https://viivhealthcare.com/hiv-community-engagement/hiv-stigma/ (accessed November 2024)