Abstract
Despite increased HIV testing and access to treatment in Australia, presentations with advanced disease occur, placing a significant burden on the health system. We sought to describe costs associated with HIV care in the first year post diagnosis in a specialized, tertiary-level HIV service and identify factors predicting increased health care costs. People newly diagnosed with HIV from 2016 to 2020 were included in the study. Data were gathered regarding their demographics (age, gender, birthplace, and first language), HIV parameters (viral load [VL] and CD4 cell count), antiretroviral therapy start date, opportunistic illness history, and health care costs (inpatient, outpatient, and emergency) from 12 months of diagnosis. Multivariable modeling was used to identify factors associated with increased costs. We identified 147 people; median age 38 years, 90% male, median CD4 count at diagnosis 338 cells/µL with median initial cost of care AUD $22,929 (interquartile range $11,902–$39,175). Costs associated with advanced HIV diagnosis (CD4 < 200 cells/µL; n = 52) were more than double an early HIV diagnosis (CD4 ≧ 350 cells/µL; n = 69) (median $46,406 vs. $20,274; p < .001). In univariate analysis, older age, higher VL, low CD4 count, and VL >200 copies/mL after 6 months were associated with increased costs. In multivariate analysis, older age (p = .001) and CD4 count <200 cells/µL (p = .001) were the only factors predicting increased cost in the first year after HIV diagnosis. Prioritizing HIV testing strategies to allow earlier diagnosis of HIV would significantly reduce the financial burden of HIV care.
Introduction
New HIV diagnoses in Australia have decreased by 30% in the last decade, with 722 new notifications in 2023 compared with 1,037 in 2013. 1 A combination of factors has contributed to the decline in notifications, including HIV prevention strategies such as preexposure prophylaxis (PrEP), which became available on a government-funded scheme from 2018, 2 and the effect of the COVID-19 pandemic. 1 Notifications of HIV have increased in 2023 compared with the 522 notifications in 2022 that likely represent increased HIV testing and presenting for medical care after the period of lockdowns and restrictions of the COVID-19 pandemic. Importantly, the overall trend over the prior decade is still a reduction in new diagnoses of HIV. 1 An estimated 30,010 people living with HIV (PLWH) were present in Australia by the end of 2023, with 92% of these estimated to be aware of their diagnosis. 1 Recent Australian surveillance data report an increase in the population prevalence of HIV viral suppression that was associated with declining incidence in HIV among gay and bisexual men prior to the rapid uptake of PrEP. 3 In an era of effective antiretroviral therapy (ART) and ongoing diagnoses of HIV, there is a cumulative increase in the number of PLWH each year.
Understanding the costs of HIV care and factors associated with increased costs is important to inform public health initiatives, maximize the efficiency of available health budgets, and improve health outcomes. Cost estimates of HIV care have been previously performed in Australia using a Markov modeling approach, predicting a lifetime cost of AUD $282,000, of which 92% were attributed to ART. 4 Globally, equivalent modeling studies in the United States and England have been performed, estimating lifetime costs of U.S. $420,285 (AUD $625,600), where ART contributed 78% and GBP £300,000 (AUD $383,700), respectively. 4,5 Importantly, separate modeling studies evaluating the cost-effectiveness of HIV screening programs found that even in low prevalence HIV settings (<1%), screening increased life expectancy by over 1.5 years in those diagnosed early by screening, reduced transmission by 44%, and was cost effective. This study used assumptions around deferring ART until CD4 counts declined to below 350 cells/µL, which was standard of care at the time, so benefits for health outcomes and onward transmission would be much greater in the current day. 6 Importantly, all these modeling approaches use a range of assumptions about clinical encounters and their associated costs and not the actual costs incurred.
HIV presentations are often categorized into three stages according to CD4 cell count at diagnosis: early (CD4 ≧ 350 cells/µL), late (CD4 200–350 cells/µL), and advanced (CD4 < 200 cells/µL). Despite increased access to HIV testing and treatment in Australia, the proportion of newly diagnosed people with HIV with a late or advanced diagnosis (CD4 < 350 cells/µL) has actually increased as a proportion of all HIV diagnoses; 277 (27.3%) in 2014 and 247 (37%) in 2023. 1 This observed trend of increasing proportion of late presentations despite an overall reduction in HIV diagnoses has significant clinical, resource, and economic implications. People presenting with late or advanced HIV are more likely to require care for opportunistic illness, require longer hospital stays, and have higher morbidity. 7 –9 Investigators in Europe and North America have reported increased costs of HIV care associated with late diagnosis. 10 –12
Therefore, we aimed to quantify the actual costs of care in the first year after diagnosis for adults newly diagnosed with HIV between 2016 and 2020 at a large tertiary hospital specializing in HIV care in Victoria, Australia. Furthermore, we sought to identify demographic and clinical factors predicting increased costs of care to inform future interventions to improve health and economic outcomes.
Materials and Methods
We performed a retrospective evaluation of all new HIV diagnoses in adults between 2016 and 2020 managed at the Alfred Hospital. We included all active patients, defined as those who had been newly diagnosed and had a viral load (VL) test between 6 and 18 months after diagnosis indicating ongoing care within the HIV service. Patients were excluded if they transferred care to another service within the first year from diagnosis. We collected clinical data on demographics (age, gender, country of birth, first language, sexual orientation, and indigenous status), HIV parameters (VL and CD4 cell count), ART start date, and complications (death and history of opportunistic illness). These data were obtained from a database of all patients with HIV cared for within the Department of Infectious Diseases and the hospital electronic medical records system. Health care cost data (inpatient, outpatient, and emergency) in the first 12 months after diagnosis were obtained from the Performance, Analysis, and Costing team and are reported in Australian dollars. These actual costs encompass all aspects of health care from staffing, pathology tests, imaging, ART, non-ART treatment, and allied health and were not adjusted for inflation for the study period. Ethics approval was obtained from the Alfred Human Research and Ethics Committee (Project ID 92/22).
We compared the clinical, demographic, and cost data according to CD4 count at presentation and defined as early (CD4 ≧ 350 cells/µL), late (CD4 200–349 cells/µL), and advanced (CD4 < 200 cells/µL). Univariate comparisons were performed using a chi-squared test or Kruskal–Wallis test, as appropriate. Associations with total cost were examined using Kendall’s tau for continuous variables and Kruskal–Wallis test for categorical variables. For multivariable analysis, costs were log transformed (outcome), and linear regression was used with variables that had p-values <.05 from the univariate analysis. Coefficients were back-transformed to aid with interpretation of the results. P-values <.05 were considered statistically significant.
Results
We identified 231 adults with a new diagnosis of HIV in the study period, of which 84 were excluded from the analysis as they did not have evidence of ongoing care with our service. Therefore, 147 adults newly diagnosed with HIV between 2016 and 2020 (Table 1) were included in the analysis. The median age was 38 (interquartile range [IQR] 29–48), and 132 (89.8%) were male, 12 (8.2%) were female, and 3 (2.0%) were transgender female, most of whom were born in Australia (n = 83, 58.5). There was a trend for the median age to increase with advancing clinical stage (36 [IQR 29–44] for early, 37.0 [IQR 29–51] for late, and 41.5 years [IQR 30.5–52.5] for advanced). The median VL at diagnosis was 105,102 copies/mL (IQR 22,178–280,083), and the median CD4 count was 338 cells/µL (IQR 120–506). The median time from diagnosis to ART commencement was 20 days (IQR 13–33), and treatment success (VL <200 copies/mL) was achieved in 141 (95.9%) cases during the study period. Regarding HIV clinical stage at diagnosis, 69 diagnoses (46.9%) were early, 26 (17.7%) were late, and 52 (35.4%) were advanced. There was no significant difference in age, gender, country of birth, and days from diagnosis to ART commencement or treatment success between the three clinical groups (Table 1).
Characteristics of People Newly Diagnosed with HIV Between 2016 and 2020 Stratified by Clinical Stage of HIV at First Presentation (n = 147)
Numbers are frequency (%) or median (p25, p75).
ART antiretroviral therapy; IQR, interquartile range; SD, standard deviation; VL, viral load.
The overall median total health care cost in the first year after diagnosis was AUD $22,929 (IQR $11,902–$39,175), of which the inpatient cost contributed the vast majority (median $21,760; IQR $11,683–$46,845). Most patients in the early cohort (n = 55, 80%) incurred no emergency department attendance costs compared with late (n = 18, 69%) and advanced (n = 18, 35%; p < .001) diagnoses. There was a significant difference in median total cost between the three groups, with costs increasing with more advanced presentation: $20,274 (IQR 9,249–24,927) in early, $19,809 (IQR 10,257–25,558) in late, and $46,406 (IQR 23,747–82,990) in advanced (p < .001). A significant difference was also observed in the median inpatient cost where advanced presentation costs were more than double early presentation ($11,683 early vs. $14,826 late vs. $31,361 advanced, p = .007). The median ART costs were similar between the three groups (p = .418) but encompassed a decreasing proportion of the total cost from early to advanced groups. Among individuals with total costs exceeding $100,000, 10 were in the advanced cohort and 1 in the late cohort. The highest cost incurred by any one individual was $846,803.
Factors associated with increasing costs in univariate analysis included age (τ = 0.283, p < .001), high VL at diagnosis (τ = 0.123; p = .005), and low CD4 count at diagnosis (τ = −0.278; p < .001) (Table 2). Advanced and late diagnoses predicted increased costs compared to an early diagnosis (both p < .001). Opportunistic infection was associated with significant costs, more than triple the cost of those without an opportunistic infection ($63,869 vs. $20,750, p < .001). Fewer days from diagnosis to ART commencement, as well as treatment success, were also associated with increased cost in univariate analysis. In multivariate analysis, the only factors predictive of increased cost were older age and advanced disease compared with early disease (both p < .001). For each one year increase in age, costs increased 3% on average (β = 1.03 [95% confidence interval [CI] 1.01–1.04]), and those in the advanced group incurred an almost doubled cost compared to those in the early group (β = 1.98 [95% CI 1.38–2.84]; Table 2).
Univariable and Multivariable Predictors of Increased Costs of Care
Multivariate linear regression with [Log]total cost as outcome, N = 146.
Compared with late diagnosis.
Compared with advanced diagnosis.
Compared with early diagnosis.
OI, opportunistic illness.
Discussion
In this study of people newly diagnosed with HIV, we demonstrate the economic burden of advanced clinical stage of infection as independently predicting increased costs of health care in the first year after diagnosis. Presentations with an advanced diagnosis cost more than double the median total cost of an early diagnosis ($46,406 vs. $20,274). Over 53% of this cohort was diagnosed with either late (17.7%) or advanced (35.4%) HIV. This is higher than nationally reported data, where the proportion of late presentation (CD4 < 350 cells/µL) is estimated at 37% in 2023 and 44% in 2022. 1 This follows an observed decline in the number of HIV notifications in Australia in 2023; 722 diagnoses, down from 895 in 2019. 1 While declining notifications were observed before 2020, and especially with the introduction of PrEP, this decrease is likely attributable at least in part to the COVID-19 pandemic and its effect on population movement, social activity, and access to health care including HIV testing. This high proportion of late diagnoses is concerning in a context where access to testing and treatment is easily available in a publicly funded health system at minimal cost to the individual. Missed clinical opportunities for earlier HIV diagnoses during hospital presentations and admissions still represent an important gap and warrant ongoing education to clinicians and guideline groups. 13,14 In addition, Australian data on the cascade of HIV care reported over 90% of people diagnosed, on ART with a suppressed VL, and some of these targets already at 95%. 15,16 Despite these advances, late HIV diagnoses represent an important clinical problem and are associated with increased costs of care. Delayed presentation is also a significant global problem 17 with 40%–60% of European, 72%–83% of Asian, and 35%–89% of African new diagnoses estimated as late or advanced. 8,18,19
Our findings are consistent with several global studies, demonstrating the costs of care associated with late presentations of HIV are significantly higher when compared with early diagnosis. A Canadian study of 241 people with newly diagnosed HIV, reported the mean cost of late-stage presentations (CD4 < 200 cells/µL) was more than twice as high as that of early presenters. 12 Consistent with our findings, an Italian study of 525 people highlighted that late-stage presentations, low CD4 count, and age were predictors of total cost, but in addition, demonstrated male sex and protease inhibitor exposure predicted increased total cost. 10 In addition, a United States study of 8,348 patients reported care costs of late presenters beyond the first year, demonstrating that increased care costs extend up to 7–8 years of HIV care. 11
A substantial proportion of delayed presentation costs was attributed to inpatient care, with median inpatient costs increasing from just under $12,000 to over $31,000 from early to advanced disease. This likely reflects the health care burden of opportunistic infections and significant comorbidities seen in advanced disease. In the previous Australian study modeling lifetime costs of HIV, where 92% of costs were attributed to ART, the mean HIV-related lifetime hospitalization was only estimated at $395. 4 The difference between this estimate and our findings underscores the disparity between modeling studies based on assumptions versus using actual costing data. Studies reporting actual costs more accurately inform health programs and expenditure estimates, allowing for accurate planning of health resources and future interventions.
Barriers to early diagnosis should be considered when evaluating the proportion of delayed presentations. In Australia, the majority of new HIV diagnoses occur in men who have sex with men, a cohort who have recently experienced declining notifications. 1 Late diagnoses are more common among men who have sex with both men and women, men aged 50 years and over, men born in Asia, and men living in remote areas. 1,20 Factors associated with late presentation are broad, varying from poor recognition of HIV risk among patients and providers, poor social supports, to disparities in health care access and stigma. 21 –23 In a multicultural society such as Australia, intersections between social or cultural factors and HIV-related stigma and prejudice still contribute to delayed presentations. 24 In our study, we did not find differences in CD4 count group or association with costs for country of birth or language and contrasts with a European study reporting migrants presenting much later than native-born individuals. 25,26 Despite the findings in our study, the importance of early detection in this population should not be discounted, as migrants living in high-income countries are disproportionately affected by HIV with characteristics associated with poor HIV clinical outcomes. 27 –30
While our findings are significant, this study does have some limitations. First, the costing data obtained likely underestimate the economic burden of care, as it only accounts for the expenses of a single health care service. Missed expenses would include presentations to other health services for investigations or treatments, including presentations to primary care/general practitioners. Importantly, prior studies have demonstrated high retention in HIV care where care is initiated, and low numbers of care disengagement in Victoria, Australia 1,15,16 ; thus, we predict that overall, the majority of hospital expenses have been captured. We also acknowledge a proportion of costs of HIV care may be unrelated to HIV itself and may be attributed to other comorbidities which we have not explored in this study.
In conclusion, we demonstrate the economic burden of late presentation of HIV within the first 12 months of care. Prioritizing HIV detection using strategies to allow earlier diagnosis of HIV would significantly reduce the financial burden of HIV care. This would be achieved by addressing social, structural, and individual barriers to HIV testing and prompt initiation of subsequent ART.
Footnotes
Acknowledgment
The authors would like to acknowledge the Performance Analysis and Clinical Costing Service at Alfred Health, which is providing the costing data.
Authors’ Contributions
R.S.S.: Conceptualization, formal analysis, investigation, methodology, visualization, writing—original draft, and writing—review and editing. P.M.G.: Conceptualization, formal analysis, investigation, methodology, writing—original draft, and writing—review and editing. S.J.L.: Formal analysis. E.L.S.: Conceptualization. P.R.H.: Data curation. J.F.H.: Data curation, investigation, resources, supervision, and writing—review and editing. J.H.M.: Conceptualization, formal analysis, investigation, methodology, resources, supervision, visualization, writing—original draft, and writing—review and editing.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.
