Understanding the stigma surrounding infectious diseases like HIV and mpox may help community health workers break down barriers that hinder access to care.

Looking back in history can provide valuable lessons to confront stigma in health care today, especially toward Black, Latine, LGBTQ+, and other historically underserved communities disproportionately affected by COVID-19 and HIV.

Public Good News spoke with Sam Brown, HIV prevention and wellness program manager at Civic Heart, a community-based organization in Houston’s historic Third Ward, to understand the effects of stigma around sexual health and vaccine uptake. 

Brown shared more about Civic Heart’s efforts to provide free confidential testing for sexually transmitted infections, counseling and referrals, and information about COVID-19, flu, and mpox vaccinations, as well as the lessons they’re learning as they strive for vaccine equity.

Here’s what Brown said.

[Editor’s note: This content has been edited for clarity and length.]

PGN: Some people on social media have spread the myth that vaccines cause AIDS or other immune deficiencies when the opposite is true: Vaccines strengthen our immune systems to help protect against disease. Despite being frequently debunked, how do false claims like these impact the communities you serve?

Sam Brown: Misinformation like that is so hard to combat. And it makes the work and the path to overall community health hard because people will believe it. In the work that we do, 80 percent of it is changing people’s perspective on something they thought they knew.

You know, people don’t even transmit AIDS. People transmit HIV. So, a vaccine causing immunodeficiency doesn’t make sense. 

With the communities we serve, we might have a person that will believe the myth, and because they believe it, they won’t get vaccinated. Then later, they may test positive for COVID-19. 

And depending on social determinants of health, it can impact them in a whole heap of ways: That person is now missing work, they’re not able to provide for their family—if they have a family. It’s this mindset that can impact a person’s life, their income, their ability to function. 

So, to not take advantage of something like a vaccine that’s affordable, or free for the most part, just because of misinformation or a misunderstanding—that’s detrimental, you know. 

For example, when we talk to people in the community, many don’t know that they can get mpox from their pet, or that it’s zoonotic—that means that it can be transferred between different species or different beings, from animals to people. I see a lot of surprise and shock [when people learn this]. 

It’s difficult because we have to fight the misinformation and the stigma that comes with it. And it can be a big barrier.

People misunderstand. [They] think that “this is something that gay people or the LGBTQ+ community get,” which is stigmatizing and comes off as blaming. And blaming is the thing that leads us to be misinformed. 

PGN: In the last couple years, your organization’s HIV Wellness program has taken on promoting COVID-19, flu, and mpox vaccines to the communities you serve. How do you navigate conversations between sexual health and infectious diseases? Can you share more about your messaging strategies?

S.B.: As we promoted positive sexual health and HIV prevention, we saw people were tired of hearing about HIV. They were tired of hearing about how PrEP works, or how to prevent HIV. 

But, when we had an outbreak of syphilis in Houston just last year, people were more inclined to test because of the severity of the outbreak. 

So, what our team learned is that sometimes you have to change the message to get people what they need. 

We changed our message to highlight more syphilis information and saw that we were able to get more people tested for HIV because we correlated how syphilis and HIV are connected and how a person can be susceptible to both. 

Using messages that the community wants and pairing them with what the community needs has been better for us. And we see that same thing with COVID-19, the flu, and RSV. Sometimes you just can’t be married to a message. We’ve had to be flexible to meet our clients where they are to help them move from unsafe practices to practices that are healthy and good for them and their communities.

PGN: You’ve mentioned how hard it is to combat stigma in your work. How do you effectively address it when talking to people one-on-one?

S.B.: What I understand is that no one wants to feel shame. What I see people respond to is, “Here’s an opportunity to do something different. Maybe there was information that you didn’t know that caused you to make a bad decision. And now here’s an opportunity to gain information so that you can make a better decision.”

People want to do what they want to do; they want to live how they want to live. And we all should be able to do that as long as it’s not hurting anyone, but also being responsible enough to understand that, you know, COVID-19 is here. 

So, instead of shaming and blaming, it’s best to make yourself aware and understand what it is and how to treat it. Because the real enemy is the virus—it’s the infection, not the people. 

When we do our work, we want to make sure that we come from a strengths-based approach. We always look at what a client can do, what that client has. We want to make sure that we’re empowering them from that point. So, even if they choose not to prioritize our message right now, we can’t take that personally. We’ll just use it as a chance to try a new way of framing it to help people understand what we’re trying to say. 

And sometimes that can be difficult, even for organizations. But getting past that difficulty comes with a greater opportunity to impact someone else.

This article first appeared on Public Good News and is republished here under a Creative Commons license.

What you need to know

• In January 2024, the World Economic Forum hosted an event called Preparing for Disease X to discuss strategies to improve international pandemic response.
• Disease X is a term used in epidemiology to refer to potential disease threats. It is not a real disease or a global conspiracy.
• Preparation to prevent and respond to future pandemics is a necessary part of global health to keep us all safer.

During the World Economic Forum’s 54th annual meeting in Davos, Switzerland, global health experts discussed ways to strengthen health care systems in preparation for future pandemics. Conspiracy theories quickly began circulating posts about the event and the fictional disease at its center, so-called Disease X. 

What is Disease X?

In 2018, the World Health Organization added Disease X to its list of Blueprint Priority Diseases that are public health risks. But, unlike the other diseases on the list, Disease X doesn’t exist. The term represents a hypothetical human disease capable of causing a pandemic. Although experts don’t know what the next Disease X will be, they can make educated guesses about where and how it may emerge—and how we can prepare for it.

Why are we hearing about Disease X now?

COVID-19 has been the deadliest infectious disease outbreak of the 21st century. It’s also an example of a Disease X: a previously unknown pathogen that spreads rapidly around the world, claiming millions of lives. 

When the WEF hosted a panel of experts to discuss Disease X, it was the first exposure that many people had to a concept that global health experts have been discussing since 2018.

Even before the routine pandemic preparedness event took place, online conspiracy theorists began circulating false claims that those discussing and preparing for Disease X had sinister motives, underscoring how widespread distrust of global health entities has become in the wake of the COVID-19 pandemic. 

Why does Disease X matter?

Epidemiologists use concepts like Disease X to plan for future outbreaks and avoid the mistakes of past outbreaks. The COVID-19 pandemic and the recent non-endemic outbreak of mpox highlight the importance of global coordination to efficiently prevent and respond to disease outbreaks.

Pandemics are inevitable, but the scale of their destruction doesn’t have to be. Major disease outbreaks are likely to become more frequent due to the impacts of climate change. Preparing for a pandemic now helps ensure that the world is better equipped to handle the next one.

This article first appeared on Public Good News and is republished here under a Creative Commons license.