Trends in healthcare expenditure among people living with HIV/AIDS in the United States: evidence from 10 Years of nationally representative data

In 2013, almost 7000 people in the United States died due to complications from HIV/AIDS [1]. Though this number is less than half of that reported a decade earlier, HIV/AIDS is still among the leading causes of death within the United States and worldwide [1]. The introduction of highly active antiretroviral therapy (HAART) was largely responsible for the substantial declines in HIV-related morbidity and mortality [2]. In fact, the number of new annual infections has been reduced by more than 60% since 1985 [1]. With approximately 1.2 million people living with HIV/AIDS (PLWHA) [1], there have been increasing concerns about the costs associated with lifetime treatment of the infection, including costs associated with accessing medical care, HIV medications, and costs for treating co-morbid conditions. Though previous studies have projected lower healthcare costs due to the availability of HAART and fewer hospitalizations due to AIDS-defining illnesses, more recent studies have suggested that, for a proportion of PLWHA, frequent and lengthy hospitalizations are common, which are associated with high personal costs and healthcare expenditures [3, 4].

The cost of HIV care in the United States is a critical issue considering that there are approximately 1.2 million PLWHA. A recent study estimated that the lifetime medical costs for an individual who becomes infected with HIV at age 35 was $326,500, with 60% of those expenses attributable to the costs of antiretroviral medication [5]. This estimate was 3.3 times higher than the lifetime costs of medical care for high-risk individuals who remain uninfected and include the medical costs related to treating both HIV and non-HIV-related conditions. In addition to costs incurred due to longer lifespans, the rates of new infections are on the rise within vulnerable populations, particularly among young, Latino and African American men who have sex with men (MSM) between the ages of 13 and 24 years [1]. Between 2005 and 2015, HIV infections rose by 87% among young, African American MSM; however, more recent figures suggests that the dramatic increase is beginning to level off [1]. Among Latino MSM, new infection rates rose by 24% during the same period [1]. These figures are concerning, as members of vulnerable groups are less likely to engage in outpatient care and more likely to seek in-hospital care, which is associated with higher cost expenditures [4]. Additionally, in 2002, the costs associated with new HIV cases in the United States were estimated to be $6.7 billion in direct medical costs and $29.7 billion in indirect costs that result from productivity losses, which describes lost economic opportunities as a result of illness, disability, or premature death [6]. These estimates do not include economic losses that occur as a result of caregiving responsibilities or morbidity, which suggests that the true economic burden may far exceed the estimated costs [6]. The costs for lifetime treatment based upon the number of new diagnoses were estimated to be $16.6 billion in 2009 [7]. Longer lifespans and the over-representation of members from vulnerable groups living with the virus have important implications for healthcare systems, particularly as it relates to resource utilization and allocation, and cost expenditures [2].

Though there have been a number of studies that have examined the costs of HIV care within the United States, the majority of these studies focused on data collected prior to or shortly after the advent and uptake of HAART, were limited by a focus on a short time frame, or have not provided cost comparisons between HIV/AIDS and other chronic conditions [2, 6, 8‐11]. Since the early years of the HIV epidemic, researchers were tasked with providing accurate and updated information regarding the costs of HIV care to assist key stakeholders and decision-makers with economic planning, policy development and adjustments, economic evaluations of interventions focused on treatment costs, and resource allocation [5]. Therefore, the current study uses data from a nationally representative sample to assess direct healthcare expenditures for PLWHA from 2002 to 2011 in the United States when compared to those without HIV, but suffering from other chronic conditions.

Despite the decline in AIDS-related morbidity and mortality, the financial burden of HIV resulting from longer lifespans and the rise of new infections among vulnerable groups in the United States is considerable. The purpose of the current study was to provide updated estimates of direct healthcare expenditures for PLWHA using data from a nationally representative sample of patients receiving care from diverse provider sites. Compared to individuals without HIV, PLWHA were more likely to be members of racial minority groups, unmarried, poor, less educated, and report comorbid chronic conditions. Our results support previous studies that have highlighted concerns regarding the ‘browning’ of HIV, as PLWHA are more likely to face social and structural challenges that contribute to higher rates of infection and subsequently, a higher financial burden [6]. Moreover, members of vulnerable populations may be more likely to enter HIV care at more advanced disease stages, which has been associated with greater healthcare utilization and thus higher costs [2, 18].

To our knowledge, this is the first study to compare the financial burden of PLWHA and those living with other chronic conditions. We found that PLWHA had significantly higher direct healthcare expenditures between 2002 and 2011 than their counterparts; they reported higher costs of prescription medications, and higher utilization of inpatient, office-based, and home health services. Moreover, our analyses indicated that PLWHA incur incremental costs that are approximately $10.7 billion, or 800–900%, higher than their counterparts without HIV but living with other chronic conditions (i.e., CVD, diabetes, and stroke). For PLWHA, the largest proportion of cost expenditures resulted from prescription medications, which increased steadily during the study period to account for 66% of total expenditures, costing $17,854 in 2008/2011, which is approximately $4000 more than medication-related expenditures in 2002/2004. Our results are consistent with earlier studies finding that costs of prescription medications are increasing over time and aside from mortality-related productivity loss, represents the most burdensome cost to PLWHA and the healthcare system [5, 19]. As such, changes in HIV cost expenditures are largely dependent upon fluctuations in medication costs, which may be expected to decrease as expiring patents make way for generic options [9, 20].

Our overall annual, per-person cost estimate ($31,147) was substantially higher than those of earlier studies (mean total costs between $18,640 and $20,300) [4, 7, 19]. These higher costs are likely due to the wide availability of HAART and longer life expectancies, which require people to take HAART over longer periods of time, contributing to higher direct cost expenditures [4, 5]. Previous research, however, has suggested that universal uptake of HAART could lead to lower indirect cost expenditures, as better health among PLWHA and longer lifespans could lead to greater economic productivity [6]. For those with other chronic conditions, the largest proportion of cost expenditures resulted from inpatient and office-based fees, followed by prescription medication costs. However, the costs of prescription medications for PLWHA were almost 5 times higher than the top three cost expenditures for those without HIV, combined. The results of this study suggest that HIV/AIDS remains a significant concern for the United States and requires additional resources and research to identify ways to reduce HIV care costs, yet improve the quality of care. Considering the needs of those most vulnerable to infection, access to HAART may become increasingly difficult for individuals if policies and allocation of resources are not improved. There is a strong need for financial investment and socio-structural interventions to reduce the financial burden on those most impacted by HIV in order to facilitate longer and healthier lives [5].

The current study has several major advantages over previous studies, including: 1) an examination of cost trends using data from a nationally representative survey; 2) an analysis of cost expenditures using a variety of categories, including prescription medications, inpatient services, office-based care, dental treatment, emergency room visits and home health services; 3) the utilization of a novel methodology that enables incremental cost estimates; 4) accounting for multiple comorbidities in an attempt to isolate the effect of HIV/AIDS; 5) the inclusion of unadjusted cost estimates to provide further insight into the actual costs amassed by PLWHA; and 6) using pooled analyses that capture cost trends over a 10-year period of time.

Though this study has a number of strengths, our results are also subject to several limitations. First, HIV/AIDS status was determined by means of self-report and was not confirmed by the use of laboratory tests. As a result, it is possible that HIV status was under-reported, considering that a large proportion of PLWHA are unaware of their HIV status ¹. However, people unaware of their HIV status will not be accessing HIV care so will likely have few, if any, incurred costs. This method, however, has been commonly used in the cost estimation literature and for those who are aware of their status, reporting is likely to be accurate [21]. Second, due to limitations of secondary data analyses, we are unable to access indirect costs associated with HIV, including loss of productivity and a decreased quality of life. As a result, the current findings cannot estimate the indirect costs associated with accessing and utilizing HIV care. Lastly, the current data, though sensitive to change over time, is pooled and therefore cannot be interpreted as representative of longitudinal trends.

Our estimates of cost expenditures associated with HIV care over a 10-year period show a financial burden that exceeds previous estimates of direct medical costs. However, these results do not consider cost expenditures that result from indirect sources, such as productivity loss and early disability and mortality. Though PLWHA are likely to incur greater healthcare costs over time due to prescription medication, the clinical benefits to the person, as well as the larger community, may be substantial and could lead to fewer viral transmissions, saving approximately $230,000 for each averted infection [5]. There is a strong need for investment in combination prevention and intervention programs, as they have the potential to reduce HIV transmission, and facilitate longer and healthier living thereby reducing the economic burden of HIV/AIDS. Future research should consider how socio-structural factors interact with demographic characteristics to influence HIV cost expenditures. With changing political climates, the outcomes of PLWHA might be greatly impacted. The Affordable Care Act (ACA), for example, offered substantial benefits to PLWHA, including: 1) access to private insurance coverage; 2) expanded Medicaid eligibility based upon income and residency; 3) elimination of annual and lifetime benefit costs; and 4) elimination of insurance companies abilities to deny coverage based upon pre-existing conditions [22]. Recent efforts to repeal the ACA could lead to less healthcare coverage for PLWHA, especially childless adults and those at greatest risk for transmitting the virus, leading to increases in new infections and higher healthcare costs. It is therefore critical that public health researchers, advocates, and physicians partner with lawmakers to ensure that PLWHA who are most vulnerable to poor health outcomes have equal access to healthcare.