The United States has made significant progress in transitioning HIV from a fatal diagnosis to a manageable chronic medical condition through scientific breakthroughs such as the advent of antiretroviral therapy. Despite this progress, barriers still exist to enabling individuals living with HIV to access treatment and assisting individuals in achieving an undetectable viral load. Researchers and policymakers play an important role in developing innovative approaches to connecting and retaining individuals in care. 

The previous post in this two-part series introduced the Ending the HIV Epidemic: A Plan for America (EHE) initiative and focused on the protect pillar of the program. As highlighted in the first post, with the goal of eliminating the HIV epidemic by 2030, the initiative builds upon four distinct pillars:

  • diagnose all individuals with HIV as early as possible after infection; 
  • treat the infection rapidly and effectively after diagnosis, achieving sustained viral suppression; 
  • protect individuals at risk for HIV using proven prevention approaches; and 
  • respond rapidly to detect and respond to growing HIV clusters and prevent new HIV infections. 

In this post, I will focus on the Diagnose and Treat pillars of the initiative, specifically on the barriers that exist in meeting the initiatives goals, potential solutions to these barriers, and gaps in the research for future exploration.

Despite Advances, Lack of Awareness of Infection and Linkage and Retention in Care Remain as Issues 

While prevention interventions are considered the most cost effective strategies in ending the HIV epidemic in the United States, for the 38,000 new infections that occur every year and the 1.1 million who are currently living with the virus, researchers and policymakers must consider streamlined approaches to transition individuals through the HIV care continuum. The HIV care continuum is a series of steps, including diagnosis, linkage to initial HIV treatment within one month of diagnosis, and receiving and retention in continued clinical care management for their infection, to focus on daily adherence to their antiretroviral therapy. The main goal of antiretroviral therapy, the combination of medications used to treat HIV, is to enable individuals living with the virus to achieve the final step in the care continuum, which is achieving viral suppression. Having an undetectable viral load is vital to the long-term health of any individual living with HIV, and also can serve to prevent transmission to others. Based on findings from a breakthrough 2011 NIH-funded experiment, researchers concluded that individuals who obtain and sustain viral suppression present effectively no risk of sexually transmitting the virus to their HIV-negative partners. This breakthrough, known as Undetectable = Untransmittable (U=U), has been a staple in the modern fight to end HIV. 

Despite the various advances that have enabled individuals living with HIV to lead long and healthy lives, a number of gaps exist in the current landscape. In the US, 154,000 individuals (14 percent) living with the virus are unaware of their infection, with more than half (55 percent) of individuals living with HIV ages 13-24 being unaware. According to the CDC, of the 38,000 new infections, a large portion (40 percent) of infections were from people who were unaware of their status. For the 60 percent of infections that were from individuals who were aware of their status, these were due to individuals not being retained in HIV care or not taking it consistently enough to obtain viral suppression.  Statistics from HIV.gov show that for individuals living with HIV, only a little more than half (67 percent) had received any HIV care, 49 percent were retained in that care, and 53 percent were able to achieve an undetectable viral load. 

Researchers & Policymakers Can Develop and Facilitate Access to Innovative Solutions

In order to reach the goals set forth in the EHE initiative of ensuring 95 percent of individuals living with HIV are aware of their infection as well as getting 95 percent of individuals living with HIV on treatment, researchers and policymakers should consider innovative strategies to increase diagnosis and assist individuals living with HIV in achieving viral suppression. Beginning with diagnosis, health systems could consider implementing opt-out testing regimens. While opt-in testing is more economically feasible, opt-out strategies could be implemented in high-risk areas and in populations disproportionately impacted and have proven to increase testing rates. Furthermore, to address the stigma associated with the virus and its existence as a barrier to individuals testing themselves for HIV, local health departments and HIV programs should consider dispensing HIV self-testing kits for individuals to test at home. Research shows that mail distribution of self-testing kits increases individuals’ likelihood of testing themselves for HIV and did not increase risky sexual behaviors. Finally, physicians could consider integrating HIV testing into routine testing for other STDs (chlamydia, gonorrhea, syphilis, etc.). 

In order to increase the number of individuals living with HIV on treatment, health systems and researchers must take a multi-faceted approach to link people to care and increase adherence in antiretroviral therapy for sustained viral suppression. Local and state health departments should consider enhancing their Data to Care programs, a strategy aimed at utilizing HIV surveillance data to identify individuals currently not receiving HIV care in order engage or re-engage individuals into HIV treatment. In addition, health systems should consider ways to integrate HIV care into primary care, as time constraints and potential coverage issues associated with seeing a specialist could be a barrier in individuals remaining in care. However, to effectively integrate HIV care into the primary care setting, health systems must assess their provider and organizational readiness and provide trainings and assistance to healthcare professionals on best practices as needed. Finally, more research could be conducted on how access to support services (housing, food bank/food delivery, non-medical case management, transportation, etc.) impact individuals ability to remain in HIV care and achieve viral suppression.

As the United States moves forward in the development and execution of Ending the HIV Epidemic: A Plan for America, researchers and policymakers should continue to consider the solutions highlighted in this series as well as others, specifically focusing on solutions targeted at communities disproportionately impacted by the virus, in order to move toward the goals set forth in the initiative. Furthermore, though discussed separately, stakeholders must understand that progress, or lack thereof, in one area will directly impact another area (e.g. increasing the number of individuals on HIV treatment and assisting them in achieving a sustained undetectable viral load will ultimately prevent new infections from occurring). The holistic approach set forth in the initiative is the only way to end the epidemic that has claimed over 700,000 American lives.  

AcademyHealth recently executed a one-year project that sought to improve Medicaid availability and delivery of the PrEP intervention package, particularly recommended clinical monitoring and follow-up services such as STD screening and treatment. Guided by a Steering Committee of diverse stakeholders, the project focused on assessing and addressing structural, operational, financial, and knowledge barriers regarding PrEP intervention services among providers, payers, and public health leaders.

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Logan Sheets

Research Assistant - AcademyHealth

Logan Sheets joined AcademyHealth in June 2019 as a Research Assistant supporting the Evidence-Informed State ... Read Bio

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