Beyond the Test: Ensuring Linkage to Care After HIV Self-Testing

HIV self-test kits have emerged as a pivotal tool in the fight against HIV/AIDS, offering a private and convenient method to determine one's status. The World Health Organization endorsed these kits in 2016, marking a significant step in global HIV/AIDS prevention. The COVID-19 pandemic further highlighted their importance as traditional testing declined, with the Centers for Disease Control & Prevention (CDC) emphasizing their role in ensuring continued access to HIV testing.

In the U.S., 14% of the estimated 1.1 million people living with HIV are unaware of their status. Men who have sex with men (MSM) have a particularly high prevalence of undiagnosed men with sero-positive status. Yet, a study in JAMA Network found that only 25.7% of MSM in urban areas had used an HIV self-test. This limited adoption and data indicating that many don't pursue necessary treatment or prevention post-testing, highlights the challenges ahead.

HIV Self-Testing: Nuances and Linkage to Care

HIV self-test kits, endorsed for their easy access to HIV testing, come with detailed instructions for self-administration and result interpretation. However, users are strongly advised to verify their results at a healthcare facility, particularly if they end up with a reactive (“positive”) result.

While the potential of HIV self-testing is evident in its ability to increase the number of people aware of their HIV status, the real challenge lies in ensuring that those who test positive are seamlessly linked to appropriate medical care and support. A study in The Lancet highlighted a significant gap in connecting these individuals to post-testing HIV care. This gap is alarming, considering the importance of early intervention in HIV management, which not only benefits a person’s health but also reduces the risk of transmission.

A systematic review by The Conversation further emphasized this challenge:

  • There's an 8% increase in users finding an HIV clinic post-testing.

  • A significant number of users did not initiate HIV treatment or PrEP after self-testing.

  • Women sex workers were 47% more likely to seek medical care post-testing, yet testing rates among clients of sex workers remained unchanged.

  • MSM users might engage more in condomless anal sex post self-testing.

One major obstacle in this linkage to care is the lack of localized resources accompanying the test kits. For example, kits from OraSure, a leading manufacturer, provide general post-test advice but often lack specific resources or directions for localized care, leaving people, especially those testing positive, uncertain about their next steps.

To address these challenges, it's crucial to not only link people to care but also ensure they access the necessary treatment and preventive measures. Strategies that have proven effective in bridging care gaps for chronic conditions, like hepatitis B, can be adopted. Leveraging community-based participatory approaches, partnering with community organizations, and implementing robust referral systems can ensure that people receive the essential care and support post-testing.

Benefits, Hurdles, and Real-World Implications of Self-Testing

HIV self-testing offers a private and convenient alternative to traditional methods, addressing barriers such as transportation, stigma, confidentiality concerns, and outdated HIV criminalization laws. A Vital Signs report from 2016 revealed that 38% of new HIV transmissions were from people who were unaware of their status, emphasizing the need for increased testing. The CDC's eSTAMP study found that self-tests doubled the likelihood of MSM identifying new HIV transmissions.

However, challenges persist. Many users, despite recognizing their status, don't or can’t take subsequent necessary steps, such as pursuing HIV treatment or initiating PrEP, as highlighted in The Conversation. Additionally, functional considerations like storage conditions play a role in the effectiveness of self-tests. For instance, the OraQuick test should be stored between 36°F and 80°F, a factor that becomes increasingly relevant in the face of climate change, hot summers, and extended transit times. Similarly, self-testing kits produce physical evidence of screening that needs to be discarded by the person using the test. If that person is in a safe, welcoming situation, storing the test or disposing of the materials from the test might result in risks of experiencing stigma, discrimination, or even harm.

Accuracy in self-testing is paramount. The OraQuick In-Home HIV Test claims over 99% accuracy for negative results and 91.7% for positive ones, though the testing window period can influence accuracy. Users appreciate the autonomy self-testing offers, but it should be part of a broader strategy, complemented by counseling and care linkage and stigma reduction, as emphasized by The Lancet study.

Financial Incentives and Real-Life Implications:

In many studies evaluating the effectiveness and adoption of HIV self-tests, participants were often provided financial incentives to report their test results. This approach ensured a higher rate of result reporting and offered insights into user behavior post-testing. However, in real-life scenarios, such financial incentives are absent. This discrepancy raises concerns about the actual rate of result reporting and subsequent linkage to care when people purchase and use these kits outside of a study environment. Without the motivation of financial incentives, there's a potential risk that some people might not seek further care or counseling after a reactive test, especially if they lack access to localized resources or support systems.

Economic Factors, Barriers, and the Way Forward

Self-testing presents a promising avenue to increase HIV status awareness, but economic and psychological barriers hinder its adoption. The CDC found that 61% of Americans had never been tested for HIV, and less than 30% of those most at risk had been tested in the preceding year.

The CDC's eSTAMP study highlighted the effectiveness of mailing free self-tests, with recipients being more likely to discover their HIV status. Such initiatives are cost-effective, with potential savings of nearly $1.6 million in lifetime HIV treatment costs, as estimated from the eSTAMP trial.

Despite these advantages, challenges like misconceptions about HIV risk, unawareness of self-tests, and cost considerations persist. Additionally, the emotional toll of a reactive result, especially when received alone, is a significant concern. The CDC's efforts to make HIV self-testing more accessible are commendable and addressing these barriers is essential for the initiative's success.

Conclusion

HIV self-testing is a crucial and beneficial tool in our ongoing fight against the HIV/AIDS epidemic. Yet, as with any innovative solution, it's not without its challenges. The true measure of our commitment to Ending the HIV Epidemic lies not just in the tools we develop but in the systems we put in place to ensure their effective use. As we embrace the promise of self-testing, we must also confront the gaps in linkage to care, address the barriers to widespread adoption, and ensure that every person and community, regardless of background, has the support they need post-testing.

We must ask ourselves: Are we doing enough? Are we truly leveraging the potential of these tools to make a lasting impact? The answers to these questions will shape the trajectory of our fight against HIV/AIDS.

Healthcare advancements are made every day, and it's our collective responsibility to ensure these innovations reach and benefit all, especially the most vulnerable among us. As we move forward, let's commit to not only advocating for the tools but also for the comprehensive systems of support that make them truly transformative. Because in the end, it's not just about testing; it's about reducing stigma, saving lives, building healthier communities, and creating a future free from the shadow of HIV/AIDS and that’s worth investing in.

Travis Manint - Advocate and Consultant

Travis, entrepreneur and VP of the board at Connect Northshore, has a rich marketing background, having shaped narratives for Fortune 500 giants. Today, he's a fervent advocate for LGBTQIA+ rights, driven by personal experiences with HIV and substance use disorder. His dedication was pivotal in launching Connect Northshore's inaugural LGBTQIA+ Pride event, marking a significant stride towards inclusivity.Focused on community action and policy-making, Travis emphasizes the health needs of gay, bisexual, and trans/nonbinary communities, aiming for compassionate, actionable changes in policy and community ethos. A globetrotter, he's ventured through 8% of the world's countries and 34 US States. His zest for travel parallels his love for Saints and LSU football. At home, his rescue pups, Jake and Ellie, are his joy, and moments with his lively Italian family are cherished.In all endeavors, Travis is committed to celebrating and integrating LGBTQIA+ rights into policy and community life.

https://www.linkedin.com/in/travismanint/
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