Persons with HIV infection who present late to care, as defined by an initial CD4 count <200 cells/mm3
, incur higher cumulative direct HIV treatment expenditures than those who present earlier in the disease process. Mean medical care expenditures for late presenters were 1.5 to 3.7 times as high as expenditures for early presenters, similar to a Canadian study.15
Although expenditure differences between late and early presenters narrowed for those with >5 years in care, late entry was still associated with higher cumulative expenditures than early entry, even among those with 7 to 8 years of primary HIV care.
Cumulative expenditures would be expected to increase the longer a patient received treatment. However, cumulative expenditures could be lower for late entrants if their mortality rate was higher, and they incurred expenditures over a shorter period than earlier entrants. However, the total time in care was similar across all initial CD4 groups. It is possible that over a longer observation period survival differences would appear more strongly and cumulative expenditures for late and early entrants would become closer.
In our sample, 43.1% of patients were late presenters, which is consistent with other studies that report between 24% and 43% late presenters (CD4 ≤ 200).4–6,15,26–28
We cannot distinguish reasons for late presentation, such as being unaware of one's serostatus versus being aware but unable or unwilling to enter care. Consistent with prior studies, men, Blacks, Hispanics, patients with HET risk, and older patients were more likely to present later than their counterparts.4,6,7,9,29–31
Our expenditure estimates are conservative because outpatient expenditures for treating non-HIV-related comorbidities (eg, diabetes, liver-related problems, or psychiatric conditions) have not been included. Moreover, expenditures for outpatient visits were limited to visits to the HIV care provider; visits to other specialty clinics or non-HIV-focused providers (eg, nutritionists) were not included, as this information is not collected across all HIVRN sites. We surmise that differences by presentation status would remain if we are able to include these other categories of expenditures.
Expenditures may be further underestimated whether patients receive medical services outside HIVRN sites. It is possible that late presenters may be less attached to a particular site of care, and thus more likely to use multiple providers. If so, late presenters could have additional expenditures not captured in this study, which could serve to widen differences with early presenters. From the perspective of a single provider, use of multiple care sites could be reflected by moving in and out of care. Use of multiple primary care providers simultaneously might be rare. Therefore, people with interruptions in care may have received care elsewhere. However, when we included such patients in sensitivity analyses (Appendix C, Supplementary Digital Content, online only, available at: http://links.lww.com/MLR/A132
), the main pattern of results persisted.
In addition, our estimates exclude expenditures for several types of service (eg, emergency department, home care, social services, and long-term care), as data were not available consistently across HIVRN sites. A study32
examined emergency department (ED) use based on interviews with a nonprobability sample of 951 HIVRN patients in 2003; interviews may provide more comprehensive data on ED use than clinic records. In that study, 32% of patients reported an ED visit during the 6-month observation period, and ED use was more likely among patients with CD4 <200. Although this CD4 count was not assessed at entry into care, this result suggests that including ED expenditures in current analyses would not have narrowed differences between initial CD4 groups.
There are several other limitations to this study. First, sites in our sample are not nationally representative, although they do encompass a broad geographic distribution. Second, HIVRN sites are highly experienced in the treatment of HIV, with high rates of ARV usage and OI Px. Expenditure estimates may not generalize to locales with less provider experience with HIV or smaller caseloads of HIV patients. If less experienced providers offer suboptimal therapy, hospitalization rates could increase, but survival time could also diminish; it is not clear how this would affect the cumulative expenditure differential between late and early presenters. Third, we could not observe lifetime costs; comparisons of lifetime costs of early versus late presenters await studies with longer observation periods.
We used average wholesale price, discounted by 23% (Supplemental Digital Content, Appendix B, online only, available at: http://links.lww.com/MLR/A132
) for medications. Although average wholesale price is used by many states in determining reimbursement, it does not reflect actual market transactions and may not include rebates or other price adjustments. In addition, our methods of cost estimation varied by type of cost. Our goal was to approximate payments for drugs and services, but our method does not account for variation in prices, especially for drugs and laboratory tests. However, while such factors may affect the estimates of overall expenditure levels, they may not affect estimates of expenditure differentials between early and late presenters.
In conclusion, cumulative direct medical care expenditures for late presenters averaged from $27,436 to $64,040 more than early presenters, depending on time in care, and remained higher even for those with 7 to 8 years of HIV care. Continuation of higher expenditures over time among late presenters is consistent with recent longitudinal data demonstrating that late entry into care is associated with a less robust reconstitution of the immune system.33,34
To the extent that patients with severely compromised immune systems are surviving longer, early entry into care could help to prolong patients at a relatively less costly disease stage, and thereby reduce aggregate expenditures. These findings highlight the importance of motivating at-risk individuals to seek HIV testing, and of reducing the time between first positive HIV test (or between HIV infection itself) and presentation for treatment. Unless these periods are reduced, late diagnosis and entry into care will continue to create a heightened economic burden.