As we, and others, navigate how to communicate about COVID-19 and the urgent public health issues it brings, there is much that can be learned in looking at HIV messaging and how it has evolved.
Below are some of our observations from KFF’s more than two decades of experience running large-scale public information campaigns about HIV and other communicable diseases that have bearing in this new environment.
- Don’t overlook the basics. In a rapidly changing environment where scientific advances are coming fast, it is important not to lose sight of the basics. Even after more than three decades into the HIV epidemic, we still see a need to cover fundamentals, like how HIV is – and is not – transmitted and that testing is the only way to know if you (or someone else) has it. As the COVID-19 conversation shifts to testing, treatment, and vaccines, there will still be a need for reinforcing messaging about frequent handwashing, not touching your face, and physical distancing.
- Focus on normalizing, not moralizing. Blame and shame are terrible public health motivators. In fact, they can have the opposite effect. We have seen the stigma around HIV keep people from taking the very actions needed to stem the epidemic, like getting tested or using protection. Despite best efforts, COVID-19 infections will happen. Some individuals – for reasons beyond their control and not for lack of effort – will be at greater risk. Effective messages empower.
- It can be hard to assess personal risk. There is a tendency to look for what makes us different from those who are affected. In HIV, one of the greatest barriers to reaching even those at higher risk is a sense that “it can’t – or won’t – happen to me.” The reality, of course, is that if you are exposed and not protected, there is a chance you will get infected. That’s true for any virus. First person, relatable stories can be effective in breaking down this misconception.
- Asymptomatic people are a key audience. As with HIV, not everyone with COVID-19 displays symptoms right away, or at all. Messaging needs to highlight risk, and need for prevention, even when symptoms are not visible.
- Responsibility lies with everyone. Collective action and social solidarity are critical to confronting COVID-19. The burden cannot fall only on those who are positive – or symptomatic. Sheltering in place relies on those who may be at lower risk staying home to protect the broader community and frontline workers. Just as an effective HIV response includes messaging both for those who are negative about what they can do to stay that way, as well as for those who are living with HIV, so too must COVID-19 communications.
- Acknowledge disproportionate impact without furthering stigma. While every community has experienced some type of fallout from COVID-19, emerging data indicates that Black and Latinx people are disproportionately impacted. These are some of the same populations most affected by HIV. While it is important to shine a light on communities carrying the heaviest burden, it must come with an understanding of why it is happening (lack of health care access, structural racism, social networks, etc.), which are many of the same issues that drive other health disparities, including HIV.
- Watch out for unintentional stigma. Most Americans carry some type of risk and many will test positive for COVID-19. They need to be encouraged – and supported – in sharing this information, without fear of judgement about how it happened, even as we continue to educate about prevention. Preserving confidentiality, when possible, is important.
- Don’t message in a vacuum. Life circumstances bring different challenges. Sheltering in place will come with economic uncertainty for many. Those struggling with mental health issues may feel increased stress/isolation/anxiety. The most effective messaging reflects and responds to the real-life issues people face. In communicating about HIV, we often are addressing challenges that go beyond the doctor’s office.
- Look ahead to messaging about living with COVID-19. COVID-19 is going to be part of our lives for a long time and we need to talk about not just how to survive it, but how to live with it. There has been a huge shift from the early days of the HIV epidemic when it was a death sentence to now, where it is a treatable, manageable condition. While we maintain urgency, it is also important to convey hope.
- Connect to resources. To be successful, messaging needs to connect back to concrete actions, including local resources where people can get help. Geo-based, mobile-friendly locators that direct people to testing, treatment, and access to care in their areas will be critical. These tools will need to be developed for COVID-19, as they have been for HIV, and promoted widely.
While much remains unknown about what our future with COVID-19 looks like, and even as we still are learning about the disease itself, what we have learned from messaging about HIV can offer a useful roadmap.
Since the early 1990s, KFF has produced some of the largest, most successful HIV public information campaigns on HIV, many with leading media, both here and abroad. In 2009, we launched Greater Than HIV, a social impact response that works in partnership with health departments and other community allies to reach those most affected with life-saving information. In 2019, Greater Than HIV media messages generated more than 360 million impressions and 15.4 million video views.