Overcoming the Human Immunodeficiency Virus Obstacle Course

Abstract

Approximately50000newhuman immunodeficiencyvirus(HIV) infections develop in theUnited States each year.1 Howmany of thesepeopleknowof theirHIV infection?Howmanyareengaged inHIVcare?Howmanyare successfully treatedwithantiretroviral therapy (ART)?Surprisingly,until very recently, the answers to these simplequestions regardingHIVcarewereunknown. In 2011, theHIV fieldwas shocked to learn that only about a quarter of individuals living with HIV were successfully receiving HIV treatment.2 The steps to effective treatment, often referred to as theHIV care continuum or cascade—testing, linkage to care, retention in care, ART initiation, and achievement of an undetectable viral load—oftenoperatedmore likean obstacle course than a smoothly paved road. Hurdles to successfulHIVcare include factors that are structural (eg,poverty, lack of health insurance), psychosocial (eg, stigma, substanceuse, mental illness), and clinic based (eg, the patient-provider relationship).3 The sobering numbers of those missing out on effective treatment because they did not know theywere infected and thosewhoknew their status but didnot seek care spurred collaboration between the HIV treatment and preventionmovements, 2 areas with different funding streams that often operated independently of one another. This collaboration was further catalyzed by the recognition that effective HIV treatment is effective HIV prevention, because treatment decreases the likelihood of an infected person transmitting the virus. Efforts to define and intervene on the steps of HIV care have led to reallocation of funding and increased coordination between federal and local agencies, an explicit aimof the National HIV/AIDS Strategy.4 Indeed, the proportion of personsmaking it througheachstepof thepath tosuccessful treatment creates a baseline against which to measure the effect of policy changes, such as shifts in HIV treatment guidelines, and structural reforms, such as the Affordable Care Act.5 Hall et al6 use data from the Centers for Disease Control and Prevention National HIV Surveillance System and the MedicalMonitoring Project to estimate thepercentage of persons living with HIV in the United States at each step of HIV care. More than 850 000 individuals have a detectable viral load. Blacks and Hispanics are less likely to be aware of their infection, and youth in particular are significantly less likely to know their status and receive successful HIV treatment. Eliminating these racial, ethnic, and age disparities requires addressing intersectingbarriers to care that includehealthbeliefs, trust inproviders, and stigma related toHIV, sexual identity, and drug use. Where do we go from here? The HIV cascade represents care as a linear phenomenon, yet individuals frequentlymove in and out of care.7 The cascade framework does not include estimates of mortality, making it key to understand the fraction of deaths attributable to failure at each step. In addition, cascade-related analyses tend to provide cross-sectional estimatesandcorrelates.Morework isneededtounderstandhow an individualmoves through thestepsof thecascadeover time and how each step may influence subsequent steps.8 Indeed, the cascade in its current iteration does not account forpatient experiences. Thebenchmarks that aremeaningful to patients in their successful movement through the steps of HIV testing and care are not necessarily the ones outlined by the cascade. In a similar way, definitions of engagement in care must expand to include more patient-centered metrics. Keeping appointments and achieving virologic suppression are necessary, but they are not sufficient. As implied bythemeaningof thewordengaged—“toattractandholdfast”— being truly engaged in care involves psychosocial constructs that must be clarified, measured, and promoted. Despite these limitations, there is aquietpower in the simplicityof thecascade.Thecascadeexpresses core tenetsofHIV diagnosis, treatment, and prevention. Amidst a chaotic and fragmented health care system, the points of reference offered by the cascade command attention because they are directly relevant to the real world, not just to public health officials and researchers.Defining the cascade at local, national, and global levels can catalyze systematic improvements that result in fewerHIV-infectedpersonsbeingunawareof their illness andmore persons receiving successful treatment. These Related article page 1337 Research Original Investigation HIV Care and Treatment in the United States