By Thresa Giles, CEO — Hope & Help Center of Central Florida 

Since HIV was first identified in 1983, there has been a growing, persistent stigma surrounding it. People have lived in fear of contracting the virus, of passing it on to partners, and of even testing to know their status, in part due to the stigma around HIV-positive people and the ongoing treatment of HIV. 

It is clear that HIV stigma remains a powerful force, but its shape has shifted since the early days of the HIV/AIDS crisis — not gone, just different. Fear, misinformation, discrimination, and bias are not talked about nearly as much in the media as they were throughout the eighties and into the nineties. However, they still exist, festering under the surface and exerting their influence on the lives of those with HIV and those who are vulnerable to HIV. 

Scientific advances such as PrEP (pre-exposure prophylaxis) and catchphrases like U=U (“undetectable = untransmittable”) have helped bring HIV from an essential death sentence to a more manageable condition. While the social and psychological burdens of stigma persist, they have become less visible in the media and within communities. 

Organizations that have taken on the task of providing resources, care, and education for the communities most vulnerable to HIV bear witness to how stigma still affects testing rates, diagnosis, access to care, and psychological wellness. While progress is undeniable, the work of ending the stigma around HIV is far from over. 

The evolution of HIV stigma 

The earliest years of the HIV/AIDS epidemic were defined by rampant fear, misinformation, widespread misunderstanding of how the virus was transmitted, open discrimination, and even violence. The flames of this fear and confusion were fanned by sensational media coverage and a limited systematic response. Discrimination directed toward people with HIV and vulnerable communities was shaped by rampant prejudice surrounding sexuality, poverty, and race. 

Today, the stigma is influenced by the medical advances that have changed the face of HIV. With treatment adherence, those with HIV can expect near-normal life spans. Prevention tools such as PrEP have dramatically reduced the rate of new diagnoses, with studies showing that pre-exposure prophylaxis has contributed to a 38% reduction in new cases of HIV in the US.

Although stigma has become less blatant with HIV less in the forefront, the legacy of the stigma that nearly defined the early days of the HIV/AIDS epidemic remains. There still exists a pervasive thought that only “certain people” get HIV — gay men, sex workers, and people who use intravenous drugs — the same groups that had accusatory discrimination thrown their way in the earlier days following the identification of HIV.

Stigma also leads people to believe that becoming HIV positive is a personal or moral failing. This stigma can affect not only entire communities but also those most at risk of contracting HIV, leading to lower rates of testing. 

Discrimination can cause people to distrust the medical community, negatively affecting testing and diagnosis rates. Historic abuses and deeply rooted community bias or ignorance can cause many to shy away from seeing a doctor if they are showing symptoms of HIV or to fail to get tested to know their status, increasing their chances of passing on the virus to partners. 

People also fear discrimination in the workplace. Throughout the 1980s and 1990s, there were several highly publicized discrimination cases surrounding HIV in the workplace. Cases of employers such as the TSA and a Nebraska restaurant discriminating against workers with HIV have been enough to give those in vulnerable communities pause before making their status known.

Most worrisome may be the ongoing knowledge gap about HIV that many educators and organizations have worked diligently to bridge. However, there seem to be cases where knowledge fails to reach the people who need it most, working to dispel myths or change discriminatory attitudes. 

These quieter forms of stigma result in people still being “othered,” subject to discrimination that can still impact psychological wellness, access to medical care, employment standing, and community belonging. 

Changing the conversation around HIV in the age of PrEP and U=U

The conversation surrounding HIV has dramatically changed with the introduction of treatments like PrEP and campaigns like U=U. PrEP has empowered people to manage their HIV risk through a daily pill, and recently, a once-yearly pre-exposure prophylaxis shot called lenacapavir was approved for use, making prevention easier and less of a daily burden by allowing people to fully trust in their partner’s status. For those already diagnosed with HIV, a U=U status means they can pursue partnerships without fear of transmitting the virus. 

However, as much as these advancements have changed the conversation around HIV, they have not completely erased the stigma, as new stigmas have been attached to these advancements. Studies show some people avoid use of PrEP medications due to what they believe it may signal to others about their sexual activity or their status. It is possible that some may feel PrEP use is a sign of promiscuity or risk-taking. 

U=U campaigns are another movement that, while exciting, can be shrouded in mystery for some. Use of the “U=U” catchphrase depends on medical providers properly explaining its meaning: someone with HIV who is being treated and maintains an undetectable amount of the virus has no risk of transmitting it to sexual partners. Still, those who may not have access to HIV medications or do not understand their value may be left feeling isolated and fearful of what the future holds. 

The changing conversation around HIV has led to increased internalized stigma among vulnerable populations and those with a diagnosis. Anxieties about disclosing one’s status, about what potential partners may feel about their status or PrEP use, and fear of rejection can lead to people avoiding pre-exposure medications and treatment if they are diagnosed. 

The state of HIV stigma today

Today, providers and organizations that take on the task of helping vulnerable communities and those with HIV see the way stigma can manifest itself that goes beyond statistics. 

Within healthcare settings, people may avoid testing — even when it’s offered for free — because they fear being “outed” or fear knowing their status. Microaggressions can still run rampant through the healthcare industry, with those who are HIV positive feeling as if they are treated differently from their peers who are HIV negative or not part of a high-risk community.

Internalized stigma can hinder treatment when people avoid adhering to a medication regimen or visiting their doctor due to shame or a sense of “what’s the point?” Stronger still can be the cultural bias or a lack of provider training that keeps people from seeking help or asking about pre-exposure prophylaxis options. 

Outside of healthcare, stigma still keeps people from feeling comfortable at work, within their communities, and sometimes within their own families. Studies show that stigma still persists, despite anti-discrimination laws and a better understanding of HIV overall. People may still avoid close contact with those who are HIV positive, despite years of education outreach working to dispel myths and correct misinformation about how HIV is transmitted. Those who have HIV may experience anxiety about disclosing their status, fearing it may negatively impact their jobs, standing within the community, or relationships. 

Fear of rejection and even violence remains among those with HIV, as the stigma surrounding the virus has not dissipated. Though we know more about it, and there are far more resources for those in high-risk groups, the persistent mindset about HIV that was built in the early years of the epidemic has proven hard to change. 

Changing stigmas going forward 

Tackling current stigmas will require more than just good feelings and sticking to the status quo. To dispel the stigma surrounding HIV going forward, policies, laws, and educational resources will need to keep pace with treatment and pre-exposure protection options. Organizations that work directly with vulnerable populations and those with HIV will need to continue their education outreach to dispel myths about transmission, reinforce the need for evidence-based care, and stress the need for empathy and community support. 

Comprehensive sexual health classes in schools and in the community must be updated to reflect the availability and importance of PrEP treatments and U=U campaigns. Information can help weaken harmful stereotypes that contribute to stigmas. 

Clinics and providers also have a role to play in changing modern stigmas. Providers must create environments that are HIPAA-compliant and that guarantee safety, privacy, and respect above all else. When patients who are seeking to test for, prevent, or treat HIV feel more comfortable with providers, internalized stigma can be eased. 

Community-based programs are doing heavy lifting to break stigmas, create workshops, host public education events, and support groups that deliver the correct information to those who need it most. Studies show that community-based programs and interventions can facilitate meaningful, positive shifts not only in testing rates but also in commonly held beliefs that feed into stigmas. 

The modern era of HIV feels worlds away from the darker early days of the epidemic, but victory over the virus will feel unfinished until stigmas are completely erased. With deeper conversations, widespread resources for high-risk communities, and comprehensive education, empathy, advocacy, and systemic change can erase persistent stigmas for good.

Author Bio: Thresa Giles is the Chief Executive Officer of Hope & Help, Central Florida’s leading nonprofit dedicated to ending the HIV/AIDS epidemic. With over 30 years of experience across the for-profit and nonprofit sectors, Thresa brings extensive leadership expertise in finance, operations, compliance, and organizational development. Before joining Hope & Help, Thresa served as Chief Financial Officer of Stand for Children, Inc., a national nonprofit advancing education and social equity. Her career has spanned key functional areas, including procurement, regulatory compliance, grant administration, and asset management. Thresa’s leadership is driven by a vision to strengthen community partnerships and expand access to care through strategic growth, innovation, and team development. Her work has earned her accolades such as the Jacksonville Women of Influence Award, the Ultimate CFO Award, and the State of Delaware Outstanding Leader Award.