Together TakeMeHome: One Year of Progress, Challenges Ahead
A newly published report from the Centers for Disease Control & Prevention (CDC) offers promising initial results from the first year of Together TakeMeHome (TTMH), a groundbreaking program that provides free HIV self-tests by mail to people across the U.S., including Puerto Rico, making it the largest HIV self-testing program in the nation's history. This direct-to-consumer approach aims to address persistent gaps in HIV testing coverage and reach those who have not engaged with traditional testing services, particularly within priority populations disproportionately affected by HIV.
The report reveals that TTMH has already exceeded expectations, distributing 443,813 tests to 219,360 people in its first year, far surpassing its initial goal of distributing 200,000 tests annually. Significantly, 24.1% of TTMH users reported never having previously received HIV testing, demonstrating the program's success in reaching those who may face barriers to traditional testing methods. This success builds upon the growing recognition of HIV self-testing (HIVST) as a valuable tool in the global effort to increase testing rates and achieve earlier diagnoses. The World Health Organization recommends HIVST as an additional approach to HIV testing services, recognizing its potential to overcome common barriers such as stigma, privacy concerns, cost, and lack of access to clinics.
Successes of TTMH and the Benefits of HIVST
The initial data from TTMH not only highlights the program's impressive reach but also provides valuable insights into its effectiveness in engaging priority populations and identifying new diagnoses. The report shows that 67.9% of TTMH users identify as members of groups disproportionately affected by HIV, including gay and bisexual men, Black women, and transgender women. This targeted reach is particularly important given that these communities often face greater barriers to accessing traditional testing services. Furthermore, the program's success in utilizing dating apps as a primary outreach platform, with nearly 70% of orders originating from these sources, demonstrates its ability to connect with people in online spaces where they feel comfortable. While comprehensive data on new HIV diagnoses among all TTMH users is not yet available, initial findings suggest that the program is successfully identifying people who are unaware of their HIV status. Among a subset of participants who completed a follow-up survey and had not previously reported an HIV diagnosis, 1.9% received a reactive result on their self-test.
These promising results are consistent with the broader benefits of HIVST demonstrated by research on other programs. For example, the eSTAMP study, a randomized clinical trial published in JAMA Internal Medicine, found that participants who received HIV self-tests were significantly more likely to test for HIV at least three times during the trial compared to a control group. Significantly, eSTAMP participants reported 34 newly identified transmissions among members of their social networks who used the study self-tests, highlighting the potential for HIVST to extend its reach beyond the initial user. The TakeMeHome program demonstrated that HIVST can be delivered at a reasonable cost, identifying 18 confirmed new HIV diagnoses in its first year at a cost of $9440 per diagnosis. This cost falls within the range of $3500 to $36,300 per diagnosis reported for traditional HIV testing methods implemented in various healthcare and non-healthcare settings. Moreover, research on the eSTAMP trial, a similar HIVST program, suggests that such programs can be cost-saving in the long run due to their potential to avert new transmissions and reduce lifetime HIV treatment costs. A scoping review published in Patient Preference and Adherence further supports the value of HIVST, finding that it is generally preferred over traditional testing methods due to its convenience, privacy, and the control it affords users.
One of the most significant advantages of HIVST is its ability to combat stigma, a persistent barrier to HIV testing. As noted in the Journal of Public Health Management and Practice, "Many men who have sex with men (MSM) prefer to test for HIV in privacy rather than at clinical settings or testing sites." This preference for privacy is particularly relevant for marginalized communities who may face discrimination or judgment in traditional healthcare settings. HIVST empowers people to learn their status in a safe and confidential environment. The HIV.gov blog succinctly captures this empowerment, stating that "HIV self-testing enables a person to learn their HIV status by placing control directly into the hands of users. With HIV self-tests, people can discreetly and conveniently test themselves in private, bypassing the potential discomfort or discrimination they might face in traditional settings."
Addressing the Needs of Diverse Populations
While promising, TTMH and other HIVST programs must acknowledge that HIV does not affect all communities equally. Disparities in HIV testing rates and outcomes persist, requiring tailored strategies to ensure equitable access to HIVST. For example, testing rates vary across racial and ethnic groups, with Asian people and Native Hawaiian and Pacific Islanders reporting lower rates than some other communities of color.
People who inject drugs (PWID) and those in rural communities face unique barriers to HIV testing. Research suggests that while PWID are willing to utilize at-home testing, structural barriers, such as stigma and limited access to healthcare, result in lower test completion rates. Similarly, rural communities often lack sufficient HIV prevention and testing infrastructure, and residents may face transportation challenges. To address these issues, we must partner with relevant organizations, offer alternative delivery methods, provide clear instructions and support, increase funding for rural programs, and collaborate with rural providers to promote HIVST.
Furthermore, recognizing the intersections of race/ethnicity, gender identity, and immigration status is crucial. Black and Hispanic immigrants face lower testing rates than their U.S.-born counterparts, even with known risk factors. Fear of deportation, fueled by policies like the "public charge" rule, can deter Latinx immigrants from seeking testing. Undocumented African immigrants face similar challenges, compounded by HIV-related stigma within their communities. HIVST programs must partner with organizations serving these populations, provide clear information about confidentiality and its separation from immigration enforcement, and offer culturally appropriate support.
Transgender people, especially transgender women of color, experience disproportionately high rates of HIV. HIVST can offer a more private and affirming option, but programs must be trans-inclusive and address anticipated stigma, which can be a significant barrier to testing. Similarly, people engaged in sex work often face stigma and marginalization, hindering access to healthcare. Outreach efforts should prioritize building trust, ensuring confidentiality, and partnering with organizations that serve this population.
Addressing the unique needs of diverse populations is essential for HIVST programs to achieve health equity and ensure that everyone has the tools they need to know their status and engage in appropriate care and prevention.
Strengthening Linkage to Care
While HIVST programs like TTMH are effective in expanding access to testing and identifying new diagnoses, their true impact hinges on ensuring that people who test reactive are seamlessly connected to appropriate care and support services. As highlighted in my previous blog post, there is a significant gap in linkage to care following HIVST. This gap is concerning, as timely linkage to care is essential for initiating treatment, improving health outcomes, and reducing the risk of onward transmission.
Unfortunately, we lack specific data on linkage to care outcomes for the TTMH program. However, the program website does provide information on the resources available to users who test reactive. These resources include referrals to local testing sites for confirmatory testing, contact information for HIV care providers, and links to support services. While these resources are valuable, they may not be sufficient to ensure that all people who test reactive are successfully linked to care.
To strengthen linkage to care for TTMH and other HIVST programs, we need a more robust and proactive approach. This includes implementing strategies such as:
Telehealth Follow-Up: Offering telehealth consultations for post-test counseling, linkage to care, and ongoing support can help address logistical barriers and provide immediate access to guidance.
Partnerships with Local Providers: Establishing formal partnerships with HIV testing sites, clinics, and community-based organizations can streamline referrals and ensure that people have a clear pathway to care.
Peer Navigation: Utilizing peer navigators who have lived experience with HIV can provide invaluable support and guidance to people navigating the complexities of the care system. Peer navigators can offer emotional support, assist with appointment scheduling, and help address any barriers to accessing care.
Data Collection and Monitoring: Implementing comprehensive data collection and monitoring systems to track linkage to care outcomes is essential for identifying gaps and areas for improvement. This data can help programs tailor their services to better meet the needs of their users.
By investing in these strategies, we can bridge the gap in linkage to care after HIVST and ensure that everyone who tests reactive receives the timely and comprehensive care they deserve.
Policy Enhancements
The successes of the TTMH program underscore the transformative potential of HIVST to expand access to testing, reach those who have traditionally been left behind, and combat stigma. To fully realize this potential and solidify HIVST as a cornerstone of the Ending the HIV Epidemic (EHE) initiative, we must advocate for policies that support its long-term sustainability, equitable reach, and seamless integration with other health services. This includes:
Increased Funding: Sustained and increased funding for TTMH and similar HIVST programs is paramount to ensuring their continued operation, expansion, and ability to reach diverse communities.
Targeted Outreach: Developing and implementing tailored outreach strategies for PWID, rural communities, BIPOC, and other marginalized groups, is essential for addressing the unique barriers they face and promoting equitable access to HIVST.
Public Awareness Campaigns: Comprehensive public awareness campaigns are needed to promote HIVST, address stigma surrounding HIV testing and status, and educate the public on the importance of knowing their HIV status.
Integration with Other Services: Integrating HIVST with other health services, such as STI testing and treatment, PrEP, and primary care, can create a more holistic and patient-centered approach to sexual health, facilitating access to a broader range of prevention and care services.
The EHE initiative, launched in 2019, aims to reduce new HIV transmissions in the U.S. by 90% by 2030. HIV testing is a critical first step in achieving this goal. As the CDC aptly states, "The COVID-19 pandemic has shown how critical HIV self-testing services are to sustaining momentum to end the HIV epidemic." TTMH has demonstrated that HIVST can effectively reach those who have not engaged with traditional testing services, combat stigma, and identify new diagnoses.
We must continue to advocate for policies and programs that support HIVST and ensure that everyone, regardless of their background or circumstances, has access to convenient, confidential, and empowering testing options. Together, we can make HIV testing a routine part of healthcare, reduce new transmissions, and move closer to ending the HIV epidemic in the U.S.
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.