Ryan White CARE Act: Changes Needed to Improve the Distribution of Funding
Published: 2006-04-27T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: The CARE Act, a federal effort to address the HIV/AIDS epidemic, is administered by HHS. The Act uses formulas based upon a grantee's number of AIDS cases to distribute funds to eligible metropolitan areas (EMA), states, and territories. The use of AIDS cases was prescribed because most jurisdictions tracked and reported only AIDS cases when the grant programs were established. HIV cases must be incorporated with AIDS cases in CARE Act formulas no later than fiscal year 2007. GAO was asked to discuss factors that affect the distribution of CARE Act funding. This testimony is based on HIV/AIDS: Changes Needed to Improve the Distribution of Ryan White CARE Act and Housing Funds, GAO-06-332 (Feb. 28, 2006). GAO discusses how specific funding-formula provisions contribute to funding differences among CARE Act grantees and what distribution differences could result from using HIV cases in CARE Act funding formulas.
section_title: What GAO Found
paragraphs: Multiple provisions in the CARE Act grant funding formulas as enacted result in funding not being comparable per AIDS case across grantees. First, the CARE Act uses measures of AIDS cases that do not accurately reflect the number of persons living with AIDS. For example, the statutory funding formulas require the use of cumulative AIDS case counts, which could include deceased cases. Second, CARE Act provisions related to metropolitan areas result in variability in the amounts of funding per AIDS case among grantees. For example, AIDS cases within EMAs are counted once for determining funding under Title I of the CARE Act for EMAs and again under Title II for determining funding for the states and territories in which those EMAs are located. As a result, states with EMAs receive more total funding per AIDS case than states without EMAs. Third, CARE Act hold-harmless provisions under Titles I and II and the grandfather clause for EMAs under Title I sustain funding and eligibility of CARE Act grantees on the basis of a previous year's measurements of the number of AIDS cases in these jurisdictions. For example, the CARE Act Title I hold-harmless provision results in one EMA continuing to have deceased AIDS cases factored into its allocation because its hold-harmless funding dates back to the mid-1990s when formula funding was based on a count of AIDS cases from the beginning of the epidemic. If HIV case counts had been incorporated along with the number of estimated living AIDS cases (ELC) in allocating fiscal year 2004 CARE Act grants instead of ELCs alone, funding would have shifted among jurisdictions. Grantees in the South and the Midwest generally would have received more funding if HIV cases were used in the funding formulas, but there would have been grantees that would have received increased funding and grantees that would have received decreased funding in every region of the country. Although CARE Act grantees have established HIV case-reporting systems, differences between these systems--in their maturity and reporting methods, for instance--would have affected the distribution of CARE Act funds based on ELCs and HIV case counts. Grantees with more mature HIV-reporting systems would tend to receive more funds.

section_title: Letter
paragraphs: I am pleased to be here today to discuss the Ryan White Comprehensive  AIDS Resources Emergency Act of 1990 (CARE Act). I will specifically  address factors that affect CARE Act funding of services for those with the  human immunodeficiency virus (HIV) or acquired immunodeficiency  syndrome (AIDS) and program coverage for individuals served by the  CARE Act. The Centers for Disease Control and Prevention (CDC)  estimate that between 1,039,000 and 1,185,000 people in the United States  were living with HIV/AIDS at the end of 2003. The number of people  infected with HIV/AIDS is likely to have risen since then, and CDC  estimates that, as of December 2004, it included 415,193 individuals with  AIDS.
The CARE Act, which is administered by the Department of Health and  Human Services’ (HHS) Health Resources and Services Administration  (HRSA), established a number of grant programs through which funds are  made available to states—including the District of Columbia—territories,  and metropolitan areas to provide health care, medications, and support  services to individuals and families affected by HIV/AIDS. In fiscal year  2004, more than $2 billion was provided through the CARE Act for these  health care and support services. The majority of these funds were  distributed under Title I and Title II of the CARE Act through formula- driven base grants in fiscal year 2004 based upon a measure of each  grantee’s estimated living AIDS cases (ELC). Title I provides for funding  to eligible metropolitan areas (EMA) while Title II provides for funding to  states and territories. Both Titles I and II contain hold-harmless provisions  that limit how much funding can decline from one year to the next. Title I  also contains a grandfather clause that was added in 1996, which states  that areas eligible for Title I funding at that time continue to be eligible  even if they no longer meet the eligibility criteria.
The use of AIDS cases in the distribution of formula grants was prescribed  because most jurisdictions tracked and reported AIDS cases instead of  HIV cases when the grant programs were established. Because of concerns  that a jurisdiction’s disease burden is not adequately reflected by only  counting cases that have progressed to AIDS, the Ryan White CARE Act  Amendments of 2000 required the use of HIV/AIDS case counts in the  distribution of formula grants not later than fiscal year 2007. We have  reported that because CARE Act grants serve persons who have been  diagnosed with HIV that has not progressed to AIDS as well as those for  whom it has, it would be reasonable to distribute funds on the basis of the  total number of persons living with HIV/AIDS. Incorporating HIV data  along with AIDS data would result in targeting funds more accurately  according to need. However, because there is a lack of HIV data that are  sufficiently adequate and reliable to serve as a basis for CARE Act formula  grant allocations, as of December 2005, HIV cases have not been used in  the distribution of formula grants under CARE Act programs.
To assist the subcommittee as it considers the reauthorization of CARE  Act programs, my testimony provides our findings on CARE Act funding  formulas. Specifically, I will discuss  1.  the extent of funding differences among CARE Act grantees, and how  specific CARE Act funding-formula provisions contribute to these  differences, and  2.  what distribution differences could result from using HIV cases in  CARE Act funding formulas.
My testimony today is based on our February 2006 report on CARE Act  funding. In carrying out the work for our report, we reviewed the CARE  Act of 1990, as well as the 1996 and 2000 CARE Act amendments, HRSA  documents on CARE Act funding, Institute of Medicine (IOM) reports on  the CARE Act, and other related reports. We interviewed CDC, HRSA, and  state officials, as well as officials from the National Alliance of State and  Territorial AIDS Directors. We analyzed data for fiscal year 2004, obtained  from HRSA and CDC, to examine the effects of funding-formula provisions  and the use of HIV cases with ELCs in making CARE Act funding  allocations. We also collected data on HIV case counts from state and  local HIV/AIDS officials. Based on the information HRSA, CDC, and state  and local officials provided regarding verification of the reliability of these  data, we determined these data to be sufficiently reliable for the purposes  of our analyses. We performed our work in accordance with generally  accepted government auditing standards. The report’s appendix I provides  a more detailed explanation of our scope and methodology.
In brief, multiple provisions in the CARE Act grant funding formulas as  enacted result in funding not being comparable per AIDS case across  grantees. First, the CARE Act uses measures of AIDS cases that do not  accurately reflect the number of persons living with AIDS. For example,  the statutory funding formulas require the use of cumulative AIDS case  counts, which could include deceased cases. Second, CARE Act provisions  related to metropolitan areas result in variability in the amounts of funding  per AIDS case among grantees. For example, AIDS cases within EMAs are  counted once for determining funding under Title I of the CARE Act for  EMAs and again under Title II for determining funding for the states and  territories in which those EMAs are located. As a result, states with EMAs  receive more total funding per AIDS case than states without EMAs. Third,  CARE Act hold-harmless provisions under Titles I and II and the  grandfather clause for EMAs under Title I sustain funding and eligibility of  CARE Act grantees on the basis of a previous year’s measurements of the  number of AIDS cases in these jurisdictions. For example, the CARE Act  Title I hold-harmless provision results in one EMA continuing to have  deceased AIDS cases factored into its allocation because its hold-harmless  funding dates back to the mid-1990s when formula funding was based on a  count of AIDS cases from the beginning of the epidemic.
If HIV case counts had been incorporated along with ELCs in allocating  fiscal year 2004 CARE Act grants, instead of ELCs alone, funding would  have shifted among jurisdictions. Grantees in the South and the Midwest  generally would have received more funding if HIV cases were used in the  funding formulas, but there would have been grantees that would have  received increased funding and grantees that would have received  decreased funding in every region of the country. Although CARE Act  grantees have established HIV case-reporting systems, differences  between these systems—in their maturity and reporting methods, for  instance—would have affected the distribution of CARE Act funds based  on ELCs and HIV case counts. Grantees with more mature HIV-reporting  systems would tend to receive more funds.
We reported in February 2006 that if Congress wishes CARE Act funding  to more closely reflect the distribution of persons living with AIDS, it  should consider taking actions that lead to more comparable funding per  case by revising the funding formulas. In accordance with achieving more  comparable funding per AIDS case, we raised a number of matters for  consideration when Congress reviews the CARE Act. HHS generally  agreed with GAO’s identification of issues in the funding formulas.
subsections: section_title: Background
paragraphs: The CARE Act was enacted in 1990 to respond to the needs of individuals  and families living with HIV or AIDS and to direct federal funding to areas  disproportionately affected by the epidemic. The Ryan White CARE Act  Amendments of 1996 and the Ryan White CARE Act Amendments of  2000 modified the original funding formulas. For example, prior to the  1996 amendments, the CARE Act required that for purposes of  determining grant amounts a metropolitan area’s caseload be measured by  a cumulative count of AIDS cases recorded in the jurisdiction since  reporting began in 1981. The 1996 amendments required the use of ELCs  instead of cumulative AIDS cases. Because this switch would have  resulted in large shifts of funding away from jurisdictions with a longer  history of the disease than other jurisdictions, due in part to a higher  proportion of deceased cases, the 1996 CARE Act amendments added a  hold-harmless provision under Title I, as well as under Title II, that limits  the extent to which a grantee’s funding can decline from one year to the  next.
Titles I and II also provide for other grants to subsets of eligible  jurisdictions either by formula or by a competitive process. For example,  in addition to AIDS Drug Assistance Program (ADAP) base grants, Title II  also authorizes grants for states and certain territories with demonstrated  need for additional funding to support their ADAPs. These grants, known  as Severe Need grants, are funded through a set-aside of funds otherwise  available for ADAP base grants. Title II also authorizes funding for  “Emerging Communities,” which are communities affected by AIDS that  have not had a sufficient number of AIDS cases reported in the last   5 calendar years to be eligible for Title I grants as EMAs. In addition, Title  II contains a minimum-grant provision that guarantees that no grantee will  receive a Title II base grant less than a specified funding amount.
Metropolitan areas heavily affected by HIV/AIDS have always been  recognized within the structure of the CARE Act. In 1995 we reported that,  with combined funding under Title I and Title II, states with EMAs receive  more funding per AIDS case than states without EMAs. To adjust for this  situation, the 1996 amendments instituted a two-part formula for Title II  base grants that takes into account the number of ELCs that reside within  a state but outside of any EMA. Under this distribution formula, 80 percent  of the Title II base grant is based upon a state’s proportion of all ELCs, and  20 percent of the base grant is based on a state’s proportion of ELCs  outside of EMAs relative to all such ELCs in all states and territories. A  second provision included in 1996 protected the eligibility of EMAs. The  1996 amendments provided that a jurisdiction designated as an EMA for  that fiscal year would be “grandfathered” so it would continue to receive  Title I funding even if its reported number of AIDS cases dropped below  the threshold for eligibility. Table 1 describes CARE Act formula grants for  Titles I and II.
The 2000 amendments provided for HIV case counts to be incorporated in  the Title I and Title II funding formulas as early as fiscal year 2005 if such  data were available and deemed “sufficiently accurate and reliable” by the  Secretary of Health and Human Services. They also required that HIV  data be used no later than the beginning of fiscal year 2007. In June 2004  the Secretary of Health and Human Services determined that HIV data  were not yet ready to be used for the purposes of distributing formula  funding under Title I and Title II of the CARE Act.
section_title: Multiple CARE Act Provisions Contribute to Disproportionate Funding per AIDS Case
paragraphs: Provisions in the CARE Act funding formulas result in a distribution of  funds among grantees that does not reflect the relative distribution of  AIDS cases in these jurisdictions. We found that provisions affect the  proportional allocation of funding as follows: (1) the AIDS case-count  provisions in the CARE Act result in a distribution of funding that is not  reflective of the distribution of persons living with AIDS, (2) CARE Act  provisions related to metropolitan areas result in variability in the  amounts of funding per ELC among grantees, and (3) the CARE Act hold- harmless provisions and grandfather clause protect the funding of certain  grantees.
subsections: section_title: Provisions in CARE Act Funding Formulas Incorporate Measures of AIDS Cases That Do Not Reflect an Accurate Count of Persons Living with AIDS
paragraphs: Provisions in the CARE Act use measurements of AIDS cases that do not  reflect an accurate count of people currently living with AIDS. Eligibility  for Title I funding and Title II Emerging Communities grants, as well as the  amounts of the Emerging Communities grants, is based on cumulative  totals of AIDS cases reported in the most recent 5-year period. This results  in funding not being distributed according to the current distribution of  the disease. For example, because Emerging Communities funding is  determined by using 5-year cumulative case counts, allocations could be  based in part on deceased cases, that is, people for whom AIDS was  reported in the past 5 years but who have since died. In addition, these  case counts do not take into account living cases in which AIDS was  diagnosed more than 5 years earlier. Consequently, 5-year cumulative case  counts can substantially misrepresent the number of AIDS patients in  these communities.
The use of ELCs as provided for in the CARE Act can also lead to  inaccurate estimates of living AIDS cases. Currently, Title I, Title II, and  ADAP base funding, which constitute the majority of formula funding, are  distributed according to ELCs. ELCs are an estimate of living AIDS cases  calculated by applying annual national survival weights to the most recent  10 years of reported AIDS cases and adding the totals from each year. This  method for estimating cases was first included in the CARE Act  Amendments of 1996. At that time, this approach captured the vast  majority of living AIDS cases. However, some persons with AIDS now live  more than 10 years after their cases are first reported, and they are not  accounted for by this formula. Thus, like the 5-year reported case counts,  ELCs can misrepresent the number of living AIDS cases in an area in part  by not taking into account those persons living with AIDS whose cases  were reported more than 10 years earlier.
section_title: CARE Act Funding Provisions for Metropolitan Areas Result in Disproportionate Funding
paragraphs: When total Title I and Title II funding is considered, states with EMAs and  Puerto Rico receive more funding per ELC than states without EMAs  because cases within EMAs are counted twice, once in connection with  Title I base grants and once for Title II base grants. Eighty percent of the  Title II base grant is determined by the total number of ELCs in the state  or territory. The remaining 20 percent is based on the number of ELCs in  each jurisdiction outside of any EMA. This 80/20 split was established by  the 1996 CARE Act amendments to address the concern that grantees with  EMAs received more total Title I and Title II funding per case than  grantees without EMAs. However, even with the 80/20 split, states with  EMAs and Puerto Rico receive more total Title I and Title II funding per  ELC than states without EMAs. States without EMAs receive no funding  under Title I, and thus, when total Title I and Title II funds are considered,  states with EMAs and Puerto Rico receive more funding per ELC. Table 2  shows that the higher the percentage of a state’s ELCs within EMAs, the  more that state received in total Title I and Title II funding per ELC.
The two-tiered division of Emerging Communities also results in  disparities in funding among metropolitan areas. Title II provides for a  minimum of $10 million to states with metropolitan areas that have 500 to  1,999 AIDS cases reported in the last 5 calendar years but do not qualify  for funding under Title I as EMAs. The funding is equally split so that half  the funding is divided among the first tier of communities with 500 to 999  reported cases in the most recent 5 calendar years while the other half is  divided among a second tier of communities with 1,000 to 1,999 reported  cases in that period.
In fiscal year 2004, the two-tiered structure of Emerging Communities  funding led to large differences in funding per reported AIDS case in the  last 5 calendar years among the Emerging Communities because the total  number of AIDS cases in each tier was not equal. Twenty-nine  communities qualified for Emerging Communities funds in fiscal year  2004. Four of these communities had 1,000 to 1,999 reported AIDS cases in  the last 5 calendar years and 25 communities had 500 to 999 cases. This  distribution meant that the 4 communities with a total of 4,754 reported  cases in the last 5 calendar years split $5 million while the remaining 25  communities with a total of 15,994 reported cases in the last 5 calendar  years also split $5 million. These case counts resulted in the 4  communities receiving $1,052 per reported case while the other 25  received $313 per reported case. Table 3 lists the 29 Emerging  Communities along with their reported AIDS case counts over the most  recent 5 years and their funding.
section_title: Hold-harmless Provisions and Grandfather Clause Protect Funding of Certain CARE Act Grantees
paragraphs: Titles I and II of the CARE Act both contain provisions that protect certain  grantees’ funding levels. Title I has a hold-harmless provision that  guarantees that the Title I base grant to an EMA will be at least as large as  a statutorily specified percentage of a previous year’s funding. The Title I  hold-harmless provision has primarily protected the funding of one EMA,  San Francisco.
If an EMA qualifies for hold-harmless funding, that amount is added to the  base funding and distributed together as the base grant. In fiscal year 2004,  the San Francisco EMA received $7,358,239 in hold-harmless funding, or  91.6 percent of the hold-harmless funding that was distributed. The  second largest recipient was Kansas City, which received $134,485, or   1.7 percent of the hold-harmless funding under Title I. Table 4 lists the  EMAs that received hold-harmless funding in fiscal year 2004. Because  San Francisco’s Title I funding reflects the application of hold-harmless  provisions under the 1996 amendments, as well as under current law,   San Francisco’s Title I base grant is determined in part by the number of  deceased cases in the San Francisco EMA as of 1995.
More than half of the 51 EMAs received Title I funding in fiscal year 2004  even though they were below Title I eligibility thresholds. The eligibility  of these EMAs was protected based on a CARE Act grandfather clause.  Under a grandfather clause established by the CARE Act Amendments of  1996, metropolitan areas eligible for funding for fiscal year 1996 remain  eligible for Title I funding even if the number of reported cases in the most  recent 5 calendar years drops below the statutory threshold. We found  that in fiscal year 2004, 29 of the 51 EMAs did not meet the eligibility  threshold of more than 2,000 reported AIDS cases during the most recent   5 calendar years but nonetheless retained their status as EMAs (see fig. 1).  The number of reported AIDS cases in the most recent 5 calendar years in  these 29 EMAs ranged from 223 to 1,941. Title I funding awarded to these  29 EMAs was about $116 million, or approximately 20 percent of the total  Title I funding.
Title II has a hold-harmless provision that ensures that the total of Title II  and ADAP base grants awarded to a grantee will be at least as large as the  total of these grants a grantee received the previous year. This provision  has the potential of reducing the amount of funding to grantees that have  demonstrated severe need for drug treatment funds because the hold- harmless provision is funded out of amounts that would otherwise be used  for that purpose. Fiscal year 2004 was the first time that any grantees  triggered this provision. Severe Need grants are funded by a 3 percent set- aside of the funds appropriated specifically for ADAPs. Eight states  became eligible for this hold-harmless funding in fiscal year 2004. In 2004,  the 3 percent set-aside for Severe Need grants was $22.5 million. Of these  funds, $1.6 million, or 7 percent, was used to provide this Title II hold- harmless protection. (See table 5.) The remaining $20.8 million, or   93 percent of the set-aside amount, was distributed in Severe Need grants.
The total amount of Severe Need grant funds available in fiscal year 2004  to distribute among the eligible grantees was less than it would have been  without the hold-harmless payments. However, in fiscal year 2004 not all  25 of the Title II grantees eligible for Severe Need grants made the match  required to receive such grants. In future years, if all of the eligible Title II  grantees make the match, and if there are also grantees that qualify to  receive hold-harmless funds under this provision, grantees with severe  need for ADAP funding would get less than the amounts they would  otherwise receive.
section_title: Funding Effect of Using HIV Case Counts Would Depend on Multiple Factors
paragraphs: CARE Act funding for Title I, Title II, and ADAP base grants would have  shifted among grantees if HIV case counts had been used with ELCs,  instead of ELCs alone, to allocate fiscal year 2004 formula grants. Our  analyses indicate that up to 13 percent of funding would have shifted  among grantees if HIV case counts and ELCs had been used to allocate the  funds and if the hold-harmless and minimum-grant provisions we  considered were maintained. Some individual grantees would have had  changes that more than doubled their funding. Grantees in the South and  Midwest would generally have received more funding if HIV cases were  used in funding formulas along with ELCs. However, there would have  been grantees that would have received increased funding and grantees  that would have received decreased funding in every region of the country.
Funding changes in our model would have been larger without the hold- harmless and minimum-grant provisions that we included. Changes in  CARE Act funding levels for Title I base grants, Title II base grants, and  ADAP base grants caused by shifting to HIV cases and ELCs would be  larger—up to 24 percent—if the current hold-harmless or minimum-grant  amounts were not in effect.
One explanation for the changes in funding allocations when HIV cases  and ELCs are used instead of only ELCs is the maturity of HIV case- reporting systems. Case-reporting systems need several years to become  fully operational. We found that those grantees that would receive  increased funding from the use of HIV cases tend to be those with the  oldest HIV case-reporting systems. Those grantees with the oldest  reporting systems include 11 southern and 8 midwestern states whose  HIV-reporting systems were implemented prior to 1995.
Funding changes can also be linked to whether a jurisdiction has a name-  or code-based system. CDC will only accept name-based case counts as no  code-based system had met its quality criteria as of January 2006. CDC  does not accept the code-based data principally because methods have not  been developed to make certain that a code-reported HIV case is only  being counted once across all reporting jurisdictions. As a result, if HIV  case counts were used in funding formulas, HIV cases reported using  codes rather than names would not be counted in distributing CARE Act  funds. However, even if code-based data were incorporated into the CDC  case counts, the age of the code-based systems could still be a factor since  the code-based systems tend to be newer than the name-based systems. As  of December 2005, 12 of the 13 code-based systems were implemented in  1999 or later, compared with 10 of the 39 name-based systems. The effect  of the maturity of the code-based systems could be increased if, as CDC  believes, name-based systems can be executed with more complete  coverage of cases in much less time than code-based systems. As a result,  jurisdictions with code-based systems could find themselves with  undercounts of HIV cases for longer periods of time than jurisdictions with  name-based systems. Figure 2 shows the 39 jurisdictions where HIV case  counts are accepted by CDC and the 13 jurisdictions where they are not  accepted, as of December 2005.
The use of HIV cases in CARE Act funding formulas could result in  fluctuations in funding over time because of newly identified preexisting  HIV cases. Grantees with more mature HIV-reporting systems have  generally identified more of their HIV cases. Therefore, if HIV cases were  used to distribute funding, these grantees would tend to receive more  funds. As grantees with newer systems identify and report a higher  percentage of their HIV cases, their proportion of the total number of  ELCs and HIV cases in the country would increase and funding that had  shifted away from states with newer HIV-reporting systems would shift  back, creating potentially significant additional shifts in program funding.
section_title: Concluding Observations
paragraphs: The funding provided under the CARE Act has filled important gaps in  communities throughout the country, but as Congress reviews CARE Act  programs, it is important to understand how much funding can vary across  communities with comparable numbers of persons living with AIDS. In our  report, we raised several matters for Congress to consider when  reauthorizing the CARE Act. We reported in February 2006 that if  Congress wishes CARE Act funding to more closely reflect the distribution  of persons living with AIDS, and to more closely reflect the distribution of  persons living with HIV/AIDS when HIV cases are incorporated into the  funding formulas, it should take the following five actions:  revising the funding formulas used to determine grantee eligibility and  grant amounts using a measure of living AIDS cases that does not include  deceased cases and reflects the longer lives of persons living with AIDS,    eliminating the counting of cases in EMAs for Title I base grants and again  for Title II base grants,    modifying the hold-harmless provisions for Title I, Title II, and ADAP base  grants to reduce the extent to which they prevent funding from shifting to  areas where the epidemic has been increasing,    modifying the Title I grandfather clause, which protects the eligibility of  metropolitan areas that no longer meet the eligibility criteria, and    eliminating the two-tiered structure of the Emerging Communities  program.
We also reported that if Congress wishes to preserve funding for the ADAP  Severe Need grants, it should revise the Title II hold-harmless provision  that is funded with amounts set aside for ADAP Severe Need Grants. In  commenting on our draft report HHS generally agreed with our  identification of issues in the funding formulas.
Mr. Chairman, this completes my prepared statement. I would be happy to  respond to any questions you or other members of the subcommittee may  have at this time.
section_title: Contact and Acknowledgments
paragraphs: For further information regarding this statement, please contact Marcia  Crosse at (202) 512-7119 or crossem@gao.gov. Contact points for our  Offices of Congressional Relations and Public Affairs may be found on the  last page of this statement. James McClyde, Assistant Director; Robert  Copeland; Cathy Hamann; Opal Winebrenner; Craig Winslow; and Suzanne  Worth contributed to this statement.
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