The prognosis for those diagnosed with HIV/AIDS is much different today than in 1987, when Professor Joe Catania lived in San Francisco and 90% of those infected died within two to three years.
Thanks to research, HIV/AIDS is no longer a death sentence, HIV testing is widespread, and those properly diagnosed can now live a normal lifespan with treatment, including medications that prevent HIV infection. Still, many get tested infrequently or not at all, and it’s estimated that those unaware of their HIV status account for 30%-50% of new HIV cases in this country.
People avoid testing at clinical sites because of difficulties with access, inconvenience, privacy concerns and fear of being socially stigmatized. The result is that high-risk individuals experience delayed diagnosis and treatment.
HIV self-testing products can alleviate many of these challenges.
Self-tests allow people to test in the privacy of their own home, and because people can buy multiple test kits, they can test more frequently. Self-tests are used for diabetes, high blood pressure and to detect pregnancy, the thinking goes, so why not for HIV?
A 35-year commitment – and counting – to researching HIV/AIDS prevention
Joe bought one of the first HIV/AIDS test kits in the early 2000s, and that kit sparked an idea for research into improving HIV/AIDS prevention, a topic he’s studied for the last 35 years. His idea was a new community-based intervention, and he began by conducting research that would inform such efforts.
For three years, he led studies of gay and bisexual men in Chicago and later Tanzania, and he found HIV self-tests to be painless, quick and accurate, especially when administered twice.
In 2008, Joe, working with his research partner and wife, Professor Peggy Dolcini, began collaborating with research teams in San Francisco and Chicago to obtain evaluation data from African American youth and professionals who work in African American communities to determine if HIV self-testing was an acceptable strategy.
Their published results clearly demonstrated that youth and health care professionals saw significant advantages in HIV self-testing.
A surprising result from that research was the lack of easy accessibility of HIV self-test kits in commercial pharmacies. Another problem was that the cost of these kits ranged between $45-$50 each. Research suggests that the high price and need to purchase kits from businesses that are open to the general public are significant barriers to obtaining self-test kits.
Since that early work, Joe and Peggy, along with investigators at the CDC, Emory University and UCLA, began researching HIV self-testing programs that provide tests at little or no cost using strategies that make them more readily available. The COVID-19 pandemic accelerated these efforts because departments of public health almost universally shut down their HIV testing clinics or offered reduced services. This led to the development and testing of online services to provide free HIV self-tests.
Evaluations of these services have found that they’re successful in identifying new HIV infections and increasing the number of people testing for the first time. This is important because this suggests that self-testing, when delivered at no cost and through a less public mechanism, may overcome barriers seen with clinic-based testing and commercial pharmacies.
Most importantly, online testing may have a broader reach outside of major urban LGBTQ+ communities. Consequently, those living in smaller towns and rural areas can order HIV self-test kits without disclosing their sexual orientation.
Drawbacks of online HIV self-test kits
Online HIV self-testing, however, has its drawbacks.
First, it requires a person to be proactive in seeking testing. The person must know that the online service exists, access the appropriate site and provide detailed personal information before they can receive a test.
Many online services also restrict the availability of tests, and these barriers increase the chance that people won’t use online testing or frequently test themselves over time.
Ongoing research by Ashley Schuyler, a public health doctoral candidate in OSU’s College of Public Health and Human Sciences, found that online services are primarily concerned with their ability to reach high-risk populations. Other challenges include not knowing if someone tested positive, if they followed up or sought care if needed, or if they’re truly reaching those they want to reach.
What’s needed, in addition to online distribution, is a system that allows people to test in a way that doesn’t require any action other than picking up a free HIV self-test kit and putting it into a bag to take home, Joe says.
Early studies found that when test kits were distributed at large LGBTQ+ social events, such as Pride events, large numbers of kits could be distributed in a single day.
“Unfortunately, these events are infrequent, and a desirable distribution system should be continuously available and convenient,” Joe says. “In addition, distribution sites should be in an environment where gay, bisexual and queer men would feel comfortable picking up test kits.”
My Test/My Choice: On the ground in Portland
In 2016, Joe and Peggy began working with the Multnomah County Public Health Department and community-based organizations in Portland, along with scientists from Portland State University and UCLA, to devise a low-cost strategy to improve distribution of HIV self-test kits within gay, queer and bisexual communities in urban areas.
One goal of their research was to address the shortcomings of pharmacy retail sales of oral HIV self-tests by expanding distribution to community businesses that are trusted, culturally sensitive and convenient.
This work was funded in 2020 by the National Institutes of Health and was designed to create a community-based network of LGBTQ+ commercial settings (bars/clubs, adult stores, bathhouses) that would serve as distribution sites for free oral HIV self-test kits.
Cascade AIDS Project also collaborated with the OSU team in conducting the study, and it served as the communication and distribution hub for the commercial network. During weekly visits to re-stock each commercial site, staff held conversations with site personnel to discuss problems that arose during the week, as well as solutions, which were then shared across sites.
The team knew that in order for this project to be successful, it had to be based in the community and delivered by people who are familiar and trusted, and the response to this approach has been “overwhelmingly positive,” Joe says.
“Although at the very beginning, the commercial site managers weren’t sure what the demand might be for self-test kits, they knew from their participation in other HIV/public health programs, such as condom giveaways, that customers highly approve of these activities.
“The response was so positive that many of the sites enlarged their display areas for providing the HIV self-testing kits.”
Interest in the program has been widespread. “A bartender took a picture of the kit and posted it on Instagram with a message of how fantastic it is. This meant faster diffusion – and promotion you don’t have to pay for. It’s critical to driving a program like this,” Joe says.
In addition, a manager of a bathhouse in Portland went to a national conference for bathhouse owners and told people about the study, which became known as the My Test/My Choice campaign. “Everyone was interested,” Joe says. “Attendees were excited to hear about it and wanted to know how to replicate it.”
The OSU team also conducted community focus groups to determine how to best promote the campaign.
Local media and advertisements, radio PSAs and social media were used along with posters, brochures and cards that directed potential testers to information online that would guide them to services providing PrEP, confirmatory testing and treatment.
The team made a substantial effort to use promotional materials produced by organizations across the county to lower production costs.
Ultimately, these promotional activities were successful in increasing awareness of the campaign.
Through a series of street interviews with customers who were on their way to attend one of the six businesses participating in the campaign, the team found that awareness increased from 20% to 60% over a nine-week period. The main distribution period, which ran for about three months, closed in winter 2023.
The campaign was successful in distributing 1,684 self-test kits, and Joe says that prior work showed that the distribution of self-test kits through clinical sites would have distributed approximately 300 kits in the same time period.
The team’s next goal is to extend the period of distribution from 12 weeks to 12 months, as well as expand the program to other cities, including Denver, Tucson and Albuquerque.
The team says it’s important to focus these campaigns on communities like Portland, which have a lower prevalence of HIV infection relative to cities such as New York or Chicago.
“The HIV epidemic in the United States has evolved to the point where lower prevalence cities account for a large proportion of new HIV infections, Joe says. “That is, currently at least half of HIV cases are found outside the 12 major HIV epicenters. Moreover, cities like Portland are a magnet for LGBTQ+ youth from small towns. Some come to live in the city, and others pass through, sometimes bringing and picking up infection in the process.
“To defeat HIV in the United States, we need to focus increasingly more intense efforts on these lower prevalence communities. Otherwise, they will continue to be a chronic source of new infections.
“Portland was also selected because public health departments in similar urban areas with lower HIV prevalence face a financial burden because HIV testing costs increase as HIV prevalence decreases; that is, ever larger numbers of people must be tested in order to identify a small number of HIV positive persons.”
After years of work and numerous studies, Joe is confident that such work is making a difference.
“We knew that infected people weren’t getting tested,” he says. “They would often only go into a clinic when they were sick, which could be years, and the infection was spreading in the meantime.
“Our proof of concept is this: If you get kits in people’s hands, they’ll use them, you’ll find more infected people and you’ll help save lives.”
In addition to Joe and Peggy, other collaborators on the My Test/My Choice campaign included OSU Associate Professor Jonathan Garcia, OSU PhD candidate Ashley Schuyler, Roberto Orellana from the University of Washington, and Edgar Mendez, Tony Diep and Nell Carpenter from Cascade AIDS Project, Portland.
HIV testing saves lives. Here’s what to know.
The success of using medications to prevent contracting HIV and to suppress HIV once infected depends on regular HIV testing.
Once a person is infected with HIV, it is beneficial to identify the infection as soon as possible. Earlier detection improves treatment success, which, in turn, reduces the spread of HIV to others.
People who are HIV-negative and engage in risky sexual practices are advised to seek medication (PrEP) to prevent HIV transmission.
Overall, it’s important to know your HIV status and not delay in seeking testing or treatment. The general advice is to test frequently, which involves getting tested anywhere from two to four times each year, depending on one’s level of risk behavior.