Despite impressive advances in prevention and treatment, HIV remains a significant public health problem in the United States. Over half a million people in the United States have died from HIV/AIDS1 since the first cases were reported 30 years ago.2,3 Approximately 50,000 new HIV infections occur each year,4 and nearly 1.2 million people are living with HIV/AIDS in the United States today.1,4 HIV and AIDS cases are largely concentrated in the South, the Northeast, and the West.1 Given this continuing toll, the White House Office of National AIDS Policy released on July 13, 2010, the first comprehensive National HIV/AIDS Strategy (NHAS)5,6 to:
* Reduce new HIV infections;
* Increase access to care and improve health outcomes for people living with HIV;
* Reduce HIV-related health disparities; and
* Achieve a more coordinated response to the HIV/AIDS epidemic in the United States.
Achieving these goals requires assessing the status of current and future HIV/AIDS federal funding distribution to states and other jurisdictions.7–10 However, to date, few analyses have documented whether federal HIV/AIDS funding to states correlates with living HIV case numbers or living AIDS case numbers. Ongoing policy dialogue has emphasized that funding formulas should utilize clear evidence-based criteria that are recognized as transparent and fair.11,12 Historically, funding formulas have used numbers of living AIDS cases as a measure of disease burden.13 In 2003, however, the Institute of Medicine (in reviewing formula methods for the HRSA Ryan White HIV/AIDS Program)14 recommended the use of living HIV case numbers as a more reliable representation of disease burden for allocation purposes to states, assuming such data were available and dependable. Other metrics, such as case rates (for HIV and AIDS) have also been proposed as potential measures for allocation purposes.
Previous studies of HIV funding formulas have noted that care and treatment services have, generally, received more attention than prevention.12 This is likely due to a number of factors, including the fact that quantifying unmet HIV treatment and care needs may be easier than quantifying unmet HIV prevention need. Regardless, more effort is needed to develop equitable formulas that comprehensively address HIV prevention, care, and treatment needs.
The NHAS emphasizes the necessity of monitoring and evaluating the US federal domestic investment in HIV/AIDS,6 a theme also consistent with the Department of Health and Human Services (HHS) Strategic Plan emphasis on program and budget accountability.15 As part of its response to the NHAS, HHS conducted a detailed baseline assessment of the current level of federal, domestic, HIV/AIDS spending to gauge unmet needs and to serve as a starting point for any future resource alignment. Doing so involved analyzing state-level funding from federal sources to assess if it aligned with objective measures, such as living HIV case numbers, living AIDS case numbers, or HIV/AIDS case rates.16
Herein we provide an overall description of HHS spending for HIV/AIDS, and a breakdown of federal HIV/AIDS funding by state—including Puerto Rico and the US Virgin Islands. Hence, this study analyzes how federal HIV/AIDS funding for prevention, care, and treatment correlates with disease burden—by state—with respect to both living HIV and AIDS case numbers and rates. Our analysis establishes a baseline for assessing the current distribution of these domestic resources and provides a means for tracking realignment of future funds as required by the NHAS.17
A funding reporting tool was developed to systematically gather information about HHS FY2010 HIV/AIDS spending by agency. Using surveygizmo.com, an online form was used to collect responses. The reporting HHS agencies included the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention (CDC), Centers for Medicare and Medicaid Services (CMS), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), Indian Health Service (IHS), National Institutes of Health (NIH), and Substance Abuse and Mental Health Services Administration (SAMHSA). Several staff offices in the HHS Office of the Secretary provide services using federal HIV/AIDS resources and also reported, including Office of HIV/AIDS Policy (OHAP), Office of Minority Health, Office of Population Affairs, and Office on Women's Health. Respondents were senior program officials or their designees, after unit responses were gathered within each agency or office. Technical assistance conference calls were provided by OHAP to respondents before completing the online report form.
The report format included a qualitative section to identify activities addressing the goals and objectives identified in the NHAS (ie, to reduce HIV incidence, increase quality and access to care, and reduce health disparities) and a quantitative section on estimated fiscal year 2010 HIV/AIDS expenditures. CDC HIV/AIDS program provides funding to state, local, and territorial jurisdictions to support HIV prevention programs and policies.18 HRSA Ryan White mission is to fund treatment and care for uninsured or underinsured, low-income individuals, and is based largely on formulas, although a portion of funding is competitive.19 SAMHSA mission addresses the prevention and treatment of mental and substance use disorders and opportunities where behavioral health issues intersect with HIV-related care. SAMHSA HIV/AIDS funding is based on competitive grant programs through the Minority AIDS Initiative and a 5% set aside for HIV early intervention services in the Substance Abuse Prevention and Treatment Block Grant.20 CMS mission is to provide formula-based entitlement funding of health care services for low-income individuals and families (Medicaid) and for disabled or elderly persons (Medicare), including HIV-related health care. NIH and FDA do not fund direct programs or services to patients or clients and are thus distinct from the other noted HHS agencies and not included hereon. NIH primary mission is to fund research; FDA largely oversees regulatory approval and policy.
HIV/AIDS spending by CMS is considered a legally entitled (ie, “mandatory”) appropriation for people meeting relevant eligibility requirements, whereas HIV/AIDS spending in the other HHS agencies derives from annual Congressional appropriations and is thus considered “discretionary” in nature. HRSA Ryan White funding levels are determined by the most recently available surveillance information as required by Congressional legislation, which for Fiscal Year 2010 funding is based on calendar year (CY) 2008 living AIDS and living HIV (non-AIDS) cases by state or territory.
Each agency and office responded over the course of 2 weeks in October 2010 to provide estimates of their fiscal year 2010 HIV/AIDS expenditures; actual amounts spent are typically not available until later in the next fiscal year. The online form was divided into several sections regarding how agencies spent their fiscal year 2010 HIV/AIDS funding. Given the unique missions and organization of the agencies, agency-specific reporting formats were needed for some portions of the assessment. HIV/AIDS funding was reported by agency for the US states and the jurisdictions of Puerto Rico, and the US Virgin Islands. Information was also collected on key HIV/AIDS activities that HHS organizational units had initiated or planned to undertake in support of the specific goals of the NHAS. Funding estimates were not requested in this part of the assessment. Current CDC HIV/AIDS surveillance data by state/territory1 were used for assessment of HHS HIV/AIDS resource alignment, including living AIDS cases, living HIV cases, and associated rates.
After receipt of funding reporting information online, the data were reviewed in Microsoft Office Excel 2007 spreadsheet format by OHAP staff for completeness and clarity. If additional explanation was needed, the reporting agency or office respondent was contacted for further information. Data were then analyzed in bivariate descriptive comparisons (ie, funding amounts by living HIV and AIDS case numbers and rates). We analyzed HIV/AIDS expenditures by HHS organizational unit (eg, CDC, HRSA, NIH), functional activity (eg, medical treatment, prevention, policy), and demographic characteristics of populations served (eg, HIV risk group, race/ethnicity, geographical region). A report summarizing these expenditures and key actions to implement the National HIV/AIDS Strategy was submitted to the White House Office of National AIDS Policy on December 9, 2010. What follows is an additional funding analysis, with expenditure amounts rounded to the nearest million dollars. CMS funding was for FYs 2008 (Medicare) and 2007 (Medicaid).
The 50 US states, Puerto Rico, and the US Virgin Islands were included in analysis of living AIDS and living HIV cases and rates for each state or territory, using the most recent surveillance data available from CDC.1 All states reported living AIDS cases and HIV cases through the end of 2008 presented as unadjusted living adolescent and adult (age 13 years and older) case numbers and rates per 100,000 population by state or territory. Given that HIV/AIDS cases tend to cluster in urban areas, rates per 100,000 are largely dominated by cases from populous cities within the state.
Total HHS fiscal year 2010 HIV/AIDS domestic spending, including discretionary and entitlement funding, was approximately $15,900,000,000 (Fig. 1). Of the $15,900,000,000 total domestic spending, we analyzed $9,688,000,000, which is the amount directly attributed to HIV prevention, treatment, and care services within states; excluded were HHS agency intramural costs and other costs not directly attributable to HIV prevention, treatment, or care services. Of the $9,688,000,000, mandatory funding through CMS Medicare (FY08) and Medicaid (FY07) contributed to 70% of the funding, and CDC, SAMHSA, and HRSA composed the remaining 30%. The majority of funding went to care and treatment, including CMS and the HRSA Ryan White Program. Discretionary funded activities provided through CDC, HRSA, and SAMHSA paralleled their agency missions.
HRSA fiscal year 2010 HIV/AIDS funding ($2,222,000,000) supported HIV health care services including testing (76%), nonmedical support services (8%), evaluation (3%), capacity building and technical assistance (2%), research and dissemination (1%), and policy and support/other nonmedical services (10%). CDC HIV/AIDS 2010 funding ($705,000,000) supported extramural prevention and education (58%), surveillance (13%), HIV testing (11%), capacity building and technical assistance (11%), research and dissemination (4%), and other activities (3%). NIH HIV/AIDS domestic ($2,600,000,000) and international ($485,000,000) FY 2010 research spending, which is awarded based on scientific peer review, supported HIV/AIDS etiology and pathogenesis (24%); drug discovery, development, and treatment (20%); vaccine development (17%); behavioral and social science research (14%); natural history and epidemiology (9%); HIV/AIDS microbicide development (5%); and treatment as prevention (2%); the remainder supports training, infrastructure, capacity building (7%), and information dissemination (2%). SAMHSA HIV/AIDS funding is distributed for Block Grant Funding (35%), substance abuse treatment (27%), capacity building and technical assistance (14%), prevention and education (8%), HIV testing (3%), and evaluation, policy, and support services (13%).
Funding by State or Territory
Numbers of living AIDS cases and living HIV cases (Living AIDS and HIV cases are unadjusted numbers and rates of adults and adolescents living with HIV at the end of 2008) in 2008 for each US state, Puerto Rico, and the US Virgin Islands are presented in Table 1. The table also shows living AIDS and living HIV case rates per 100,000 population, and the reported HHS FY2010 HIV/AIDS funding for prevention, care, and treatment services [ie, CDC, HRSA, SAMHSA, and CMS (FY2008 Medicare, FY2007 Medicaid)] for each state or territory. The 10 jurisdictions with the most living HIV cases (in decreasing order) are New York, California, Florida, Texas, Georgia, Pennsylvania, New Jersey, Illinois, Maryland, and Puerto Rico. The 10 states or territories with the highest living AIDS rates per 100,000 population differed somewhat from the list of 10 with the most cases: New York, US Virgin Islands, Maryland, Florida, Puerto Rico, New Jersey, Delaware, Georgia, Connecticut, and Louisiana. Therefore, some states, even with relatively low numbers of cases, may experience a relatively higher disease burden, per capita, based on their population size.
Figure 2 shows state-level or territory-level HHS funding plotted against living AIDS cases and living HIV cases. Each point represents the state data shown in Table 1. State-level funding is highly correlated with both living AIDS cases (R2 = 0.85) and living HIV cases (R2 = 0.83). The same is not seen in Figure 3, which plots state funding against AIDS and HIV case rates per 100,000 population by state or territory, (R2 = 0.42 and R2 = 0.38, respectively).
Our analysis provides updated federal funding information for HIV/AIDS in the United States, with special attention to the nearly $10B devoted to 2010 domestic programs for HIV prevention, care, and treatment. We found that HHS domestic HIV/AIDS funding, by state, was well aligned with living HIV and AIDS cases numbers, but generally not well aligned with case rates. These results demonstrate rational targeting of funds according to the 2 major measures that have been used in AIDS funding formulas in the past, with living HIV case numbers now preferred over living AIDS case numbers. The state-level HHS funding information provided in this report is unique and provides important information on where federal HIV/AIDS resources are being spent for HIV prevention, treatment and care within the United States.
This analysis serves as a valuable initial baseline of domestic HIV/AIDS spending across HHS agencies, thus providing a basis for tracking future shifts and realignments as may be required to reach the goals of the NHAS. From this analysis process, we identified the need for future upgrades to make these data relevant to tracking changes catalyzed by the NHAS. Given that agencies differed in their categorizations of funding definitions and mechanisms for capturing budget detail, future enhancements might include the following: a more common funding language; a more customized, sophisticated, and ongoing monitoring and reporting format; and a structure for reporting of state and local government HIV/AIDS spending and federal agency spending.
Other metrics besides number of HIV or AIDS cases may have utility in making decisions about resource allocation, by providing additional contextual information. For example, the HRSA Ryan White Program Part B States Territories Supplemental Awards14 are made based on a variety of factors beyond case numbers, such as prevalence of HIV/AIDS, relative rates of increasing cases, factors associated with costs and complexities of providing care, and factors that limit access to care. Consider the following scenario: 2 states may have the same number of living HIV cases (eg, 50,000 cases), and yet one state may have a larger overall population than the other (eg, 20,000,000 vs. 5,000,000), and thus a relatively lower case rate (0.25% vs. 1.00%, respectively). Other factors being equal, a smaller population state might experience a greater relative HIV/AIDS burden on its health care system and face more challenges in effectively managing and serving the same number of cases compared to a larger population state. Also, a larger population state might have a more highly developed health infrastructure and thus have more capacity to care for its citizens who are living with HIV/AIDS. Consideration of contextual information, such as rates, in addition to case numbers may provide more robust allocation models. For example, the legislation authorizing SAMHSA Substance Abuse Prevention and Treatment Block Grant awards includes a provision allowing states with AIDS case rates of 10 or more per 100,000 to use 5% of their block grant funds for HIV early intervention services.20
We note that regardless of the specific metric used, formulas based solely on case data may not necessarily result in maximal public health benefit because of issues such as the quality of available data, changes in the epidemiology of the health condition being addressed, jurisdictional differences in health care access and costs, “hold harmless” clauses, local policy influences, widespread unmet need, and other factors.11,17 Further, funding formula allocations do not typically consider how funds will be distributed locally.12 A telling example of the complexities inherent in changing funding formulas can be found in the federally funded Ryan White HIV/AIDS Program.12,13 In a 2009 analysis of changes in federal funding allocations for this program,13 Martin and Keenan13 reported the strongest predictor of current funding appeared to be the level of the original allocation (a phenomenon that they referred to as “allocation legacy”). The authors concluded that “allocations remained consistent with the pattern set during the program inception,” and that “strong political forces contributed to this inertia”.
Another alternative is merit-based funding allocations that reward enhanced creativity but may or may not consider disease burden.12 Because quality of applications may not always mirror geographic need, these merit-based approaches may instead be offered as supplements to formula-based funding allocations.14,18
There are a number of methodological caveats inherent in these data. One limitation is that the online assessment had a fixed deadline and preceded availability of actual fiscal year 2010 expenditures (although such spending estimates are generally similar to year-end figures). Another limitation is the level of data available by agency. The HHS HIV/AIDS spending estimates presented here are best considered as an aggregate of spending by various agencies, and not a unified budget—because budgets are not managed centrally at the department level, but at the operating division level.
Although this analysis provides unique state-level information, there is a need for even more in-depth understanding of federal spending at state and local levels, for a better conceptualization of who is being served (eg, by client demographic variables), where (eg, by type of service agency), and how (eg, by type of program). Also, looking at aggregate funding allocations at the state level neither provide information on relevant distribution of those funds within states, nor account for differences that may arise when looking at program and service-level distribution by health department or agency. With the results from this report and the impetus of the NHAS, future assessments should include more advanced measurement of spending to better understand HHS funding disbursement at state and local jurisdictional levels to more effectively address the HIV/AIDS epidemic in the United States.
The authors thank HHS Agency staff for their valuable assistance and input on this article, particularly Irene Hall and Jianmin Li in the CDC Division of HIV/AIDS Prevention.