Offering mailed self-testing for HIV encouraged patients to test themselves for HIV but requires methods of improving adherence to follow-up.
Self-testing for HIV was the hot topic of a session held at the Conference on Retroviruses and Opportunistic Infections 2025, with speakers discussing how self-testing could encourage more testing for HIV and, therefore, quicker uptake of antiretroviral therapy (ART) in people living with HIV. Studies that tested the efficacy of interventions that would provide self-tests were presented during the session.
Mateo Prochazka, from the World Health Organization, was the moderator of the event and spoke first to define and describe what self-testing for HIV involves. Self-testing, he said, was a form of self-care that allows for patients to maintain a sense of autonomy in the preservation of their health and methods of preventing disease. This is the reason that more than 100 countries throughout the world had policies for self-testing for HIV.
Self-testing, within the context of HIV, involves a person collecting either oral fluid or blood and inserting it into a rapid test that can determine whether a person has HIV. Although these are good tools for testing, any individual with a positive result should undergo further blood work to confirm the findings, as a positive result is not equivalent to a positive diagnosis. Self-testing can now be used to deliver pre-exposure prophylaxis (PrEP) as well.
“The focus here is not just to test, but also to link with the appropriate services,” said Prochazka. “Most of the people who actually undergo HIV testing will be negative, and the focus is to ensure that these people are being linked with interventions that can help them stay there.”
HIV self-testing has the potential to help with linking care | Image credit: Courtney Haas/peopleimages.com - stock.adobe.com
Self-testing, he said, can also be used for other viral conditions, such as hepatitis B, hepatitis C, and syphilis. Even though the structure of giving testing to others will change due to funding changes from the new administration, Prochazka emphasized that there is still a goal to maintain essential services in HIV, hepatitis, and other sexually transmitted infections. These goals include a short-term goal of mitigating and a long-term goal of simplifying and integrating a sustainable HIV response.
The results of the Together TakeMeHome program were presented first by Patrick S. Sullivan, MD, from Emory University. The program was funded by the CDC and allowed any user who was aged 17 years or older with a mail address in the US to order 1 or 2 self-test kits for HIV. The program launched in March 2023, and the results presented were through September 2024. Surveys were also conducted after the user first ordered the kit, 10 days after the kits were mailed, and 60 days after the kits were mailed.
“We recognize that it may take people some time to actually take the test and, if they have a positive result, some additional time to get linked to care,” said Sullivan.
A total of 297,043 users initially ordered kits, with 84% of the orders consisting of 2 kits. However, survey response rates varied throughout the follow-up. Although 78% of the participants completed the survey after ordering the kit, this plummeted to only 3.4% completing the survey after 10 days and 1.8% completing the survey after 60 days; only 0.5% of the patients completed both surveys. “Keep in mind this is a function both of coming back and the fact that not everyone who has ordered has yet reached that 10- or 60-day time point,” Sullivan explained.
Evidence of a prior HIV infection was reported in 2.4% of the respondents, of whom 63% used the self test. A total of 88% of the rest of the participants completed the self-test as well, of which 2.1% obtained a positive result. Of the 182 positive results, 107 followed up with more testing, and 50 of the 67 people diagnosed with HIV also started ART. The 60-day survey saw 81 new positive diagnoses, of which 35 started ART.
“I think it’s really important that we be asking ourselves as we go along whether the continuum of care, from testing to confirmation to starting therapy, is sort of being fulfilled,” said Sullivan. “It’s a great step to get people tested, but we also want to be sure we’re keeping our eye on link issue care.
Sullivan pointed out that there was a drop-off in those aged 17 to 34 years in terms of their participation in the survey, as younger individuals who obtained the kit didn’t always complete the survey, which could invite bias. However, Sullivan concluded that the self-tests were mostly used and provided a means of educating people about their risk of HIV. Future studies may need to extend the timing of the follow-up surveys to better capture participants.
Jen Hecht, the director of Building Healthy Online Communities, presented a similar study on using a nationwide mailed self-testing program to estimate the need for HIV testing per year. This study was also done through the Together TakeMeHome program, with the ultimate goal of estimating the unmet need for HIV testing per state and how much of it was met by the Together TakeMeHome program.
The Behavioral Risk Factor Surveillance System was used to estimate the need for HIV testing per state with ever testing representing people who had never been tested for HIV and past-year testing representing people who had not tested within the previous year. The met need was calculated by dividing test by number of people with need, with the lower bound assuming all kits were used by 1 person and the upper bound assuming all kits were used by different people.
There were 586,099 test kits distributed between March 2023 and July 2024. For both the upper bound and lower bound groups, the highest met needs were found in Florida, Georgia, Maryland, Mississippi, Puerto Rico, and Washington, DC. However, most of the need met was less than 10% for those in the past-year testing group in both upper and lower bound estimates. Ever-testing had slightly better results, as Washington, DC, and Puerto Rico would have nearly 40% met need in the upper bound estimate. However, outside of the top 4, all upper bound estimates were less than 20% for met need.
“Together TakeMeHome is meeting some of this need, though the percentage of need being met varies by state,” said Hecht.
HIV testing is needed by many living in the US that are not currently served by existing testing methods. Although the need being met is low in some states, allowing for some of these needs to be met is still a benefit to patients.
Overall, self-testing for HIV is a new method of getting those at higher risk of HIV to engage in means of identifying the condition and getting themselves treatment. Though there are some things to work out when it comes to getting the right people the test and in making sure that they follow up with obtaining treatment or methods of prevention, self-testing offers a promising start to linking these services together.
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