Ending the HIV Epidemic in Action

Building on Lessons Learned to Expand Access to HIV Self-Testing

While CDC researchers expected interest in HIV self-tests, especially during COVID-19, they were surprised by the volume of orders being placed. “We didn’t realize how great the demand would be for ordering a self-test kit online and performing the test from the comfort of your own home,” says CDC’s Kevin Delaney. “Self-testing clearly fills a need for people who otherwise wouldn’t get tested.”

Kevin Delaney, CDC: "Self-testing clearly fills a need for people who otherwise wouldn't get tested."

According to CDC’s Emily Lilo, the project also highlighted the importance of tailoring marketing and outreach to the populations being prioritized and framing that work as part of a broader conversation about stigma reduction, PrEP, and other HIV prevention tools. “Part of why we were able to reach the people we wanted to reach was because the campaign wasn’t happening in isolation,” Lilo says.

What does the future of HIV self-testing look like? To complement CDC’s ongoing efforts to ensure that testing leads to care—prevention for people who test negative, and treatment for people who test positive—Delaney and his fellow CDC researcher Pollyanna Chavez say the focus should be on ensuring that HIV testing is reaching all people who could benefit. That means empowering people to use self-tests to learn their status, even if it is not always possible to know what each person does after they receive a test result. “Research has shown that most people who use HIV self-tests do take steps to get linked to care and protect their health,” Delaney says. “So now we need to reframe how we measure success. It’s a win if we reach people we haven’t otherwise served or who couldn’t have accessed testing.”

“If self-testing can reach people who otherwise wouldn’t test, it’s a gateway for them to approach care,” Chavez says. “It’s empowering people to take control of their care and decreasing the potential stigma that comes from having to report on their test result.” And by destigmatizing HIV testing, she says, it can help make HIV self-tests as common as other at-home test options, such as pregnancy or COVID-19 tests.

Spotlight: Using Social Media Influence to Spread Awareness of HIV Self-Testing

Following the successful distribution of the 100,000 self-tests, CDC partnered with several influencers to continue promoting awareness of HIV self-testing, including  New York City-based musician and social media influencer Teraj. “Sharing information about HIV prevention is extremely important to me as a Black, bisexual man,” says Teraj. “I always want to uplift our community, and one way I can do that is helping to spread knowledge about the importance of HIV testing.”

Teraj shared a story on Instagram highlighting the importance of knowing one’s HIV status and linking to CDC’s Let’s Stop HIV Together campaign, which includes information about HIV self-testing. His platform allows him to reach thousands of people with each post, and he engages personally through comments and direct messages to help people access the resources they need to stay healthy. He also helps his followers navigate challenging conversations about sexual health, HIV testing, and sharing one’s status. He says his passion for empowering his community inspires him to share personal stories publicly. “I want to share my story about HIV testing to show others how simple it is to equip yourself with the tools and resources to keep yourself protected and maintain your health.”

For Teraj, the benefits of HIV self-testing cannot be understated. “We have all the tools right now to end the HIV epidemic, and self-testing is one of those tools,” he says. “It’s really convenient, saves time, and is super easy to perform at home in private. It can also be a great option for people who are nervous about navigating the healthcare system or being seen going to a clinic for in-person testing.” And, COVID-19 has made the concept of self-testing much more common, which Teraj says can destigmatize HIV testing and help more people get tested.

While access to many in-person healthcare services has improved since the beginning of the COVID-19 pandemic, CDC continues to promote HIV self-testing as a way to reach more people with testing and overcome multiple barriers to in-person services, including ongoing service disruptions. CDC also continues to work with Capacity Building Assistance (CBA) providers to build the capacity of community-based organizations and health departments to implement HIV self-testing programs and share best practices. “The hope is that we’ll be able to roll out programs like this in the future, building off the successes and lessons learned for reaching people directly with self-tests,” says CDC’s Lilo. This includes making sure grantees can use funding to integrate self-testing into their services, and rolling out new CDC funding opportunities to support community-based organizations implementing self-testing programs as well as a new program that builds on the lessons learned to further promote direct-to-consumer distribution of HIV self-tests in the U.S.

“Especially as the country continues to respond to COVID-19, self-tests are another tool in the toolbox to help us end the HIV epidemic,” Delaney says. “HIV self-testing is definitely part of the future of HIV prevention.”

Disclaimer: These stories do not represent endorsements by CDC of any organization or company mentioned.

Page last reviewed: July 27, 2022