Complexities in Late-Stage HIV Diagnoses

Delays in diagnosis can compromise the long-term health of people living with HIV and may lead to higher rates of HIV transmission. In their article in this issue of AJPH, Krueger et al. (p. 1589) combined data from three 2013–2016 national surveys to examine state-level socioeconomic and demographic characteristics associated with late-stage HIV diagnoses. The authors’ search for malleable factors that state policies and public health programs can affect represents an important path toward achieving the goals outlined in the National HIV/AIDS Strategy.¹

First, Krueger et al. highlight the inverse relationship between the percentage of individuals tested for HIV within the last 12 months and the proportion of late-stage HIV diagnoses among adults aged 25 to 44 years and use this result to recommend routine opt-out HIV testing in health care settings. Second, they note that among both age groups (25–44 years, ≥ 45 years) studied, the proportion of the state population living in a rural area was positively associated with the percentage of late-stage diagnoses, supporting the need for focused intervention in these areas. Notably, in their age-stratified analysis, only the year and the proportion of people living in rural areas were significantly related to late-stage diagnosis in both age groups.

While Kreuger et al. acknowledge that they focused on a select few demographic and state-level factors, the sociocultural landscape of HIV infection and care in the United States is far more complex and requires interventions that address how these elements operate independently and jointly. Effective public health programs and intervention will likely need more than an increase in resources to tackle this problem; those resources will also need to be appropriately targeted and tailored to the populations at hand. Here we employ the robust rural area finding from Krueger et al. to discuss a few of the underlying issues that targeted intervention in these communities may need to consider.

RURAL VERSUS URBAN: A STARTING POINT

Although the US HIV epidemic has historically been conceptualized as a coastal, urban phenomenon, there has been a recent shift toward rural communities accounting for a growing proportion of HIV diagnoses.² Despite this shift, metropolitan communities still represent the greatest proportion of new diagnoses. Consistent with National HIV/AIDS Strategy recommendations to provide funding to the “right places” (southern states and major metropolitan areas),¹ rural communities, especially those outside of the south, have received less attention. To this point, Patel et al.³ found that in 2016 more than 70% of Centers for Disease Control and Prevention (CDC)-funded HIV tests and nearly 80% of new diagnoses as a result of this funding occurred in metropolitan areas. The rural areas in the south, with HIV prevalence rates similar to those in some urban areas, received a relatively large proportion of CDC-funded tests, though the authors noted that fewer resources were provided to other rural areas.

HIV testing is a necessary precursor to (early or late) diagnosis, and rural areas throughout the country, regardless of the local HIV prevalence, are certainly in need of funding to support its uptake. Nonetheless, rural areas are also associated with a constellation of upstream barriers that can impede HIV testing, even if resources for it are made available. In their analysis of rural–urban differences along the HIV care continuum, Schafer et al.² highlighted how social disadvantage experienced in many rural communities contributes to lasting health disparities. There are higher rates of poverty, lower education attainment, and fewer health care resources, including limited access to HIV specialists, in rural communities, each of which make these areas vulnerable to HIV transmission and delayed diagnosis.

Even when HIV services are available, transportation barriers exist because of travel time demands and underdeveloped public transportation systems. Beyond structural barriers in these areas, stigma arising from cultural conservatism is frequently cited as a barrier to engaging in HIV prevention and care.³ To best serve the people living in these areas, programs must be culturally responsive, intervening with community members and rural health professionals alike. Of course, it is important to remember that rural areas do not represent a monolith—the makeup of rural Alabama is different than that of rural North Dakota. Interventions aimed at rural communities would do well to keep both their commonalities and their heterogeneity in mind.

RURAL COMMUNITIES AND THE OPIOID EPIDEMIC

Although Krueger et al. focused on late-stage diagnoses, we find it prudent to note that the recent Indiana HIV outbreak⁴ is situated in the middle of their analysis and points to the precarious position in which many rural areas exist. Briefly, between 2014 and 2015, 181 people were diagnosed with HIV in a small rural county in southeastern Indiana. The outbreak was linked to the injection use of the opioid oxymorphone. To put this outbreak and the subsequent strain on the resources in this area into context, in the preceding 10 years, there were fewer than five HIV infection cases reported annually. In their analysis of counties vulnerable to a similar outbreak, Van Handel et al.⁴ found that the communities at highest risk were overwhelmingly rural, with many in low HIV prevalence areas, further raising concern about local systems’ ability to respond effectively given their limited resources. As such, scaling up HIV testing efforts cannot solely correspond to the current HIV prevalence in an area. We must also remember the prevention arm of HIV intervention in these rural communities, even when current HIV prevalence rates are relatively low.

WHO ARE WE MISSING?

Krueger et al. capitalized upon data from three national surveys. These surveys provide much needed information regarding our nation’s successes and failures in HIV prevention and treatment. Understanding how demographic and state-level variables relate to HIV-relevant outcomes is informative. Still, we must mention that these surveys are not a complete representation of the landscape of HIV because they may overlook people whose identities and experiences are systemically related to HIV risk and transmission in the United States. For example, the Behavioral Risk Factor Surveillance System (BRFSS) that Krueger et al. analyzed includes noninstitutionalized adults who have access to a telephone (land line or mobile), meaning that people who are incarcerated, homeless, or otherwise without access to a phone are not included. Previous research has substantiated that formerly incarcerated⁵ and homeless⁶ people often have significant substance misuse histories and other behaviors that increase risk for HIV, along with reduced access to health care, making their exclusion from these databases and inquiries about delayed diagnosis troublesome. Similarly, the inclusion of questions about gender identity is a relatively new practice in national surveys; in the BRFSS, gender identity questions are included in an optional module. Given the disparities in access to appropriate health care and HIV-related outcomes among transgender people, failure to fully document their experiences in national surveys not only provides an incomplete portrait of HIV in this country but also erases this population’s considerable public health needs.⁷

CONCLUSION

Late-stage HIV diagnosis is a syndemic issue that involves sociocultural, political, historical, and economic influences operating in tandem. The study by Krueger et al. provides a starting point for understanding how late-stage HIV diagnoses persist in the United States and informs opportunities for future intervention. We are hopeful that as this line of research is extended, policymakers, public health officials, and other researchers will use a comprehensive framework to work together in addressing this problem.