In May 2024, the Massachusetts Department of Public Health released a troubling report on a cluster of HIV infections, with more than 200 new cases since 2018 attributable to injection drug use in the Boston region. These findings have national implications: Similar HIV outbreaks have been described nationwide during the overdose crisis, including in West Virginia, Indiana, and Ohio. The increase in HIV cases amid the U.S. drug overdose crisis underscores the urgent need for a comprehensive response tailored to the unique challenges faced by people who use drugs. The importance of such efforts cannot be understated. In fact, in Massachusetts, 14% of new HIV diagnoses every year are attributed to injection drug use — nearly twice the national average.
One potential solution is HIV self-testing, which would allow for rapid identification and treatment. Identifying HIV cases is the first step in addressing clusters, and quickly learning one’s status allows people to rapidly seek both treatment and prevention. Unlike traditional laboratory-based testing, which may take several days for results delivery, HIV self-testing relies on saliva and provides results in 20 minutes. The test is easily performed outside of a clinical setting by swabbing gums and collecting a sample of saliva. HIV self-testing has been available since 2012 and is recommended by the Centers for Disease Control and Prevention for accurate HIV diagnosis. It’s even part of the Department of Health and Human Services’ plan for Ending the HIV Epidemic (EHE) by 2030.
But HIV self-testing remains underutilized among not only the general public, but especially people who use drugs. As the nation emerges from the Covid-19 pandemic, during which self-testing for infectious diseases became commonplace, increasing HIV self-testing among people who use drugs may limit the spread of a virus that, while manageable with medication, can lead to significant health risks if left untreated.
Research shows that people who use drugs have a positive impression of HIV self-testing. As part of a 2023 small study in preparation for a larger NIH-funded project, our team enrolled 40 people who use drugs to determine the feasibility and acceptability of HIV self-testing within this population. We also examined whether HIV self-testing would improve interest in prevention measures like pre-exposure prophylaxis (PrEP), a medication to prevent HIV acquisition for those at elevated risk.
Our findings were encouraging. All participants reported that they would recommend HIV self-testing to others, and 82% expressed interest in receiving PrEP. In addition, providing community-based access to HIV self-testing identified three new HIV cases (8% of participants — much higher than the reported 1% in most other settings). None of the people who were positive upon self-testing were aware that they had HIV. We subsequently offered confirmatory, laboratory-based testing and connected them to care — without which they may have unknowingly transmitted HIV to others through sharing injection equipment or other risk behaviors.
Other studies have also reported favorable interest in HIV self-testing among persons who use drugs, with a 2022 study at a syringe service program reporting 77% of the 230 participants considered HIV self-testing highly acceptable and 97% found it easy-to-use. Therefore, research shows that HIV self-testing is convenient, people like it, and it’s recommended by the CDC — so why does uptake remain so low?
There are many barriers to HIV self-testing among people who use drugs. Research indicates that some people who inject drugs do not accurately perceive their risk for acquiring HIV, despite the elevated risk associated with syringe sharing.
Additionally, some people at elevated risk of HIV might have limited knowledge of self-testing and its role in infection prevention. Social determinants of health — such as having a low or no income, housing instability, and competing priorities — also hinder uptake.
Furthermore, the cost of HIV self-tests, which are not yet covered by insurance, presents a significant barrier for individuals with competing financial priorities. Currently, over-the-counter tests cost around $40, a prohibitive cost for many.
Stigma also inhibits HIV self-test purchasing, as some might feel uncomfortable being seen buying an HIV test.
There are mail-order programs providing free HIV self-tests, like the helpful CDC’s Together TakeMeHome initiative. But they require an address, which is a barrier for individuals experiencing unstable housing. Even when they can receive a test in the mail, finding a private testing location remains a challenge.
So, how can we overcome these barriers? The key may be community-based organizations. To increase accessibility of HIV self-tests, we need to meet people where they are in the community and utilize existing, trusted relationships. By partnering with drop-in centers, walk-in substance-use bridge clinics, and syringe service programs, we can distribute HIV self-tests along with harm-reduction supplies. It is notable that syringe service programs are evidence-based and have been shown to decrease the risk of HIV transmission.
Local, state, and national public health organizations should also launch educational campaigns to address inaccurate information about HIV risk and promote the accuracy of HIV self-test results and ease-of-use. Community-based organizations reach people who have remained unreached by traditional health care systems. They could enable anonymous access to HIV self-testing while also providing a private testing location. Furthermore, many community-based organizations frequented by people who use drugs offer some form of counseling, providing an opportunity for post-test assistance and linkage to care or preventative measures like PrEP.
We also know the importance of trusted community relationships in self-testing programs as demonstrated by the Covid-19 pandemic. Research shows that people are more likely to follow recommendations about testing and prevention when they are informed by a trusted source. We should expand access beyond traditional health care settings to promote accurate information, free self-testing, and post-test guidance.
The next steps are clear: Public health professionals and leaders need to research the best ways to partner with community organizations to effectively reach as many people as possible. HIV self-testing allows us to rapidly diagnose individuals and efficiently respond to clusters, two of the four pillars for EHE: diagnose and respond. Still, it is imperative to continue to address the other two EHE pillars not directly tackled through HIV self-testing: prevention and treatment. Our team and others are now working on this effort. In addition, efforts are also needed to make HIV self-testing covered by publicly-funded as well as commercial insurance.
By embracing innovative solutions like HIV self-testing and partnering with the community, we can progress toward Ending the HIV Epidemic by 2030 for everyone.
Sabrina A. Assoumou, M.D., MPH, is an infectious diseases physician-scientist at Boston Medical Center and the inaugural Louis W. Sullivan, MD, endowed professor of medicine at Boston University Chobanian & Avedisian School of Medicine. Sarah Miller is a research data associate within Dr. Assoumou’s I-CARE (Infectious Complications Assessment and Research) lab at Boston Medical Center. Meg von Lossnitzer was formerly the division director for the Prevention Division at Victory Programs Inc. in Boston.