Measuring What Matters Allocation, Planning, and Quality Assessment for the Ryan White CARE Act (2004) / Chapter Skim
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4 HIV Reporting Data and Title I and II Formulas
4 HIV Reporting Data and Title I and II Formulas
Pages 87-134
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2002) of all Ryan White CARE Act (RWCA)
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to assist the Secretary of HHS in assessing the readiness of states to produce accurate and reliable HIV case-reporting data, determine the accuracy of using HIV cases within the existing allocation formulas, and establish recommendations regarding the manner in which states could improve their HIV case-reporting systems (Ryan White CARE Act.
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· Third, incorporating HIV case-reporting data in the formula would need to produce different and more accurate assessments of "relative disease burden" and resource needs than AIDS data alone. · Fourth, including HIV data in the RWCA allocation formulas would have to result in material variation in the relative size of awards to states and EMAs and more equitable allocations.
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Specifically, the Committee examined: · Whether state HIV reporting systems are capable of providing data for the formulas; · Whether the quality of HIV data across jurisdictions is comparable; · Whether the relative ranking of need among states and EMAs varies depending on whether HIV case data or AIDS case data are employed to measure disease burden; and · Whether the RWCA formulas are sensitive enough to translate changes in input data into more equitable allocations. Each of these conditions proved difficult to verify.
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. As of October 2003, 34 states, the Virgin Islands, American Samoa, Puerto Rico, Northern Mariana Islands, and Guam had implemented the same confidential name-based reporting of HIV infection as is used for AIDS reporting and other reportable diseases and conditions.
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Although the 2000 reauthorization of RWCA authorized limited additional funds to help states implement HIV reporting systems (Ryan White CARE Act.
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Additional funds will be required to accommodate the additional informational burdens placed on states by the RWCA. Full Use of Available Data Currently, CDC accepts only name-based HIV reports in the national HIV reporting database, largely because algorithms have not been developed to unduplicate HIV data from the 15 code-based states and territories.
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The greater the variability in the way HIV data are collected across states or EMAs, the greater are the chances for bias. The inclusion of data of varying quality across jurisdictions can decrease rather than increase the equity of resulting RWCA allocations.7 It is important to note that not all biases will adversely affect the fairness of resource allocation.
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Because of the inadequacy of available information, the Committee could not fully investigate the potential influence of possible patterns of underreporting or reporting delays on resulting formula allocations. Completeness of AIDS and HIV Case Reporting Studies of the completeness of reporting compare AIDS and HIV case reports with independent data on AIDS or HIV cases that should have been reported -- typically medical or administrative records or death certificates.
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whether AIDS decedents examined by San surveillance misses Francisco Medical Examiner. a substantial Decedents with positive or number of persons indeterminate HIV antibody test who die with results were cross-referenced unreported AIDS.
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; median reporting delay was 4 months, but varied by site from 3 to 6 months. Massachusetts 92.6% (95% CI 91.6-93.5)
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(1993) completeness of 7/1988 to 11/1991 of hospital AIDS case laboratory logs, death certificates, reporting in NYC hospital discharge records, & and to determine patient registries at private whether physicians' offices and hospital completeness of outpatient clinics.
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Findings indicate that City Completeness ranged from 81 to 87% NYC AIDS surveillance for all major gender, race, risk, borough system functioned of residence, and age subgroups. effectively during first Outpatients at hospital clinics, out of decade of epidemic.
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completeness of by reviewing state and local AIDS surveillance health dept studies of in specific state completeness (conducted after and local areas 1987 and w/ 20 cases) ; most and to assess the studies matched AIDS cases in completeness of registry with alternate data reporting at a sources (death certificates, national level.
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Various state > 80% completeness in most states and Efforts to maintain levels and local localities, but lower levels of reporting of reporting are health found in some outpatient settings. At challenged by increasing departments national level, AIDS surveillance role of outpatient and at identified 7090% of all HIV-related diagnosis of AIDS.
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classified as reported by passive surveillance if the case was not reported by any reporting source after active surveillance began and more than 6 months after diagnosis. Lindan et al.
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San Francisco The proportion of deaths not reported The findings suggest that to the California AIDS registry was overrepresentation of similar among Hispanics, blacks, and minorities among AIDS whites (58%)
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Death certificates were selected and matched to the AIDS surveillance registries in each city. Medical records of those not in the AIDS registry were reviewed to determine if AIDS had been diagnosed.
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Results were similar for cases that met the 1987 AIDS surveillance definition, except there was a trend toward shorter delays over calendar year, which was attributed to possible increased awareness of the new surveillance definition. South Carolina Only 91 (59.5%)
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and 1983 (after active surveillance) were compared to cases reported to the health department's AIDS surveillance.
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San Francisco Completeness: 89% at county hospital A nonname-based and 87% at HMO; Accuracy: proper laboratory reporting match rate for 95% of records w/ system for HIV is feasible. complete codes & w/at least 50% of the codes; proper nonmatch rate for 99% of records w/complete codes & 96% w/ at least 50%; Timeliness: 82% completed reports from site 1 and 48% reports from site 2 were returned to the health department within 60 days; median days between test and receipt of test report: 9 (site 1)
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with UI-based HIV timeliness, surveillance systems. potential for UI Completeness was assessed by matching to other comparing UI-database reports databases, and w/AIDS surveillance registry proportion of data & HIV counseling/testing reports with full sites data.
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, 52% limitations to use of SSN complete (UI data compared to HIV based UI for HIV counseling/testing site data) ; median surveillance, UIs limited time of HIV test to receipt of report by the performance of an HIV state health dept: 20 days (range 1 surveillance system, and 847)
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completeness of HIV-infected patients at a sample name-based HIV of health care facilities in reporting. Louisiana were reviewed and matched with HIV/AIDS surveillance registry.
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. Published studies that primarily examined the effect of the 1993 case definition expansion on completeness of AIDS surveillance in Louisiana, Massachusetts, and San Francisco found that completeness typically tops
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Timeliness of AIDS and HIV Case Reporting Timing studies identify the lag between the first diagnosis of a case and its report to CDC by comparing reported cases to an external source. Variation in reporting delays across jurisdictions can result in systematic biases in estimates of HIV or AIDS prevalence and incidence.
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Pagano and colleagues (1994) found significant variation in time trends in AIDS reporting delays by region.
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However, the evaluation was not designed to specifically address the use of these data in RWCA resource allocation studies, and thus may not address key issues related to differential bias across jurisdictions. Additional studies are needed to examine the comparability of data from the HIV case-reporting system across jurisdictions for the purpose of allocating RWCA resources.
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Individuals with HIV that have not progressed to AIDS may be even more mobile and likely to migrate to another state or EMA over the course of their lifetime than individuals with AIDS. Thus, the potential incorporation of data on HIV cases into the RWCA formulas raises concerns about the possible inequitable allocations that may result from increased migration of people with HIV.
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While electronic laboratory-based reporting improves the completeness of HIV reporting, it adds substantial workload because patients diagnosed with HIV infection require numerous laboratory tests to manage their antiretroviral therapy, and each test must be linked to a known case or determined to be a new case. The third methodological phenomenon that might introduce differential estimates among states is the aggressiveness of case finding.
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Viral Load Alabama No No Alaska Yes <200 Yes American Samoa No No Arizona No Yes Arkansas Yes All Yes California No Yes Colorado Yes <500 Yes Connecticut Yes <200 No Delaware Yes <200 Yes District of Columbia Yes <200 No Florida No No Georgia No No Hawaii Yes <200 Yes Idaho Yes <500 Yes Illinois Yes <200 Yes Indiana Yes All Yes Iowa Yes <400 Yes Kansas Yes <500 Yes Kentucky Yes All Yes Louisiana Yes All Yes Maine Yes <200 Yes Maryland Yes <200 Yes Massachusetts Yes <200 No Michigan No No Minnesota No Yes Mississippi Yes All Yes Missouri Yes All Yes Montana No Yes Nebraska Yes <800 Yes Nevada Yes <500 Yes New Hampshire Yes All Yes New Jersey Yes <200 Yes New Mexico Yes All Yes New York Yes <500 Yes North Carolina No Yes North Dakota No Yes Ohio Yes <200 Yes Oklahoma Yes <500 Yes Oregon Yes <200 Yes Pennsylvania Yes <200 Yes Puerto Rico Yes <200 No Rhode Island Yes <200 Yes South Carolina Yes <200 Yes South Dakota No No Continued
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Findings About Comparability of Data Finding 4-2 Different rates of completeness and timeliness of HIV reports across states and EMAs have the potential to create significant biases in RWCA formula allocations. To date, studies have not an swered key questions about the comparability of HIV case-reporting data for use in resource allocation formulas.
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If, however, the epidemic is at similar levels of maturity across jurisdictions, and therefore the ratio of reported AIDS cases to reported HIV cases is relatively constant, including data on HIV cases in the formula will, in fact, have little influence on the relative measure of disease burden, and hence little influence on the awards. Although it seems reasonable to assume that the epidemic is in various stages of maturity in different jurisdictions, it is difficult to confirm this belief.
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The horizontal distance between any two curves represents the time lag between states in attaining the same cumulative proportion of reported AIDS cases -- a measure of "epidemic maturity." Figures 4-1 and 4-2 illustrate the extensive overlap in the cumulative distribution cases over the course of the epidemic across jurisdictions, with the 50th percentile of all cases reached between the earliest and latest state being only 3 years. The conclusion is that while we might expect a higher ratio of HIV to AIDS cases in some jurisdictions than others, this effect is not likely to be particularly large.
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If the ratio of reported AIDS cases to HIV cases differs across states or EMAs, including data on HIV cases in the RWCA formulas could affect the relative measure of disease burden and the allocations. Data examined by the Committee suggest that the rate of new HIV infec tions is somewhat greater in the southeastern region of the United States.
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That is, it intended to compare different factors in the funding formulas to examine the impact of including HIV cases on resource allocations across regions, and to compare the inclusion of HIV cases to other features, such as hold-harmless provisions, set-asides, minimum funding thresholds, and the potential addition of new EMAs based on a more inclusive definition of HIV burden. The Committee could not examine the effect of including HIV data in the formula because data on HIV cases were not available from all states, including several key states with a high disease burden.
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Although such departures may be appropriate, the justification for such departures was not clear. Such departures persist regardless of the measure of disease burden used, but they are most pronounced when using a combined measure of estimated HIV prevalence and AIDS preva lence.
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Finding 4-6 Several structural features of the Title I and Title II funding formulas -- most notably the counting of EMA cases in both Title I and II state formula allocations, but also such measures as hold-harmless provisions and set-asides for emerging communities- have a large influence on resulting allocations. Such structural fea tures may dampen the effect of variation introduced by the addition of HIV cases, and could obviate the potential benefits of adding HIV cases to the CARE Act allocation formulas.
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to report cases of HIV or AIDS to the state health department pursuant to their state disease reporting laws or regulations. The Health Insurance Portability and Accountability Act allows covered entities to release this health information to state health departments in compliance with state disease-reporting laws.
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Other attempts to estimate HIV prevalence in specific metropolitan areas have made use of information about sizes of populations at risk and prevalence of HIV infection in those populations from a wide variety of sources (Holmberg, 1996)
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Both modeling and survey methods can also be used to estimate cases of undiagnosed HIV infection. Although the primary reasons to have accurate surveillance of the number of persons with known HIV infection are epidemiological, the total number of people with HIV infection is relevant to assessing the size of the population that is likely to need health care services, either currently or in the future, especially if a goal is to encourage everyone to enter care.
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These recommendations should be implemented in a timely manner to provide evidence to either (1) justify inclusion of reported HIV cases in RWCA allocations formulas by FY2007, as contemplated by Congress, or (2)
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Until this occurs, large numbers of HIV cases will not be included in the national HIV reporting system, and there will be no reliable cen tralized way to use reported HIV cases to apportion CARE Act funds. CDC should work with all states to develop and evaluate methods for unduplicating HIV cases regardless of whether such cases are code- or name-based.
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These activities should be repeated periodically. Recommendation 4-5 In keeping with the CARE Act's intent as a payer of last resort, Congress should reevaluate the RWCA formulas to determine whether they allocate resources in proportion to the estimated number of individuals with HIV/AIDS who are uninsured or underinsured in states and EMAs.
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1999. Guidelines for national human immunodeficiency virus case surveil lance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome.
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2000. Ryan White CARE Act: Opportunities to Enhance Funding Equity.
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AIDS surveillance. Journal of Acquired Immune Deficiency Syndromes & Human Retrovirology 14:5660.
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2000a. Report on Ryan White CARE Act Amendments of 2000 (106-788)
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