Order Code RL33279
CRS Report for Congress
Received through the CRS Web
AIDS: The Ryan White CARE Act
Updated May 10, 2006
Judith A. Johnson
Specialist in Biomedical Policy
Domestic Social Policy Division
Paulette C. Morgan
Analyst in Social Legislation
Domestic Social Policy Division
Congressional Research Service ˜ The Library of Congress

AIDS: The Ryan White CARE Act
Summary
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act
makes federal funds available to metropolitan areas and states to assist in health care
costs and support services for individuals and families affected by the human
immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS).
The act is administered by the Health Resources and Services Administration
(HRSA) of the Department of Health and Human Services (HHS). Authorization for
the CARE Act expired on September 30, 2005.
Several recently published studies have evaluated the CARE Act and its
administration by HRSA. Measuring What Matters, a study published in 2004 by the
Institute of Medicine (IOM), assessed whether current allocation strategies equitably
and efficiently distribute CARE Act funds to areas with the greatest need, and
whether quality of care could be refined and expanded. A study released in February
2006 by the Government Accountability Office (GAO) examined the potential impact
of implementing changes to the distribution of funds under the CARE Act. A second
study by GAO, released in April 2006, examined the prices states pay for drugs used
by the AIDS Drug Assistance Programs (ADAPs).
In July 2005, the Bush Administration released its reauthorization principles and
an outline of proposed changes to CARE Act programs. Legislation reauthorizing
the Ryan White CARE Act has been introduced in the 109th Congress. S. 2339 and
a companion bill, H.R. 5009, would implement several of the Administration’s
reauthorization principles. CARE Act programs received $2.038 billion in FY2006;
the request for FY2007 is $2.133 billion, a $95 million increase — $70 million for
state grants under Title II and $25 million for Title III grants. This report will be
updated periodically.

Contents
Title I/Part A — Emergency Relief Grant Program . . . . . . . . . . . . . . . . . . . . 1
Title II/Part B — Care Grant Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Title III/Part C — Early Intervention Services . . . . . . . . . . . . . . . . . . . . . . . . 4
Title IV/Part D — General Provisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Part E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Part F — Demonstration and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Reauthorization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
List of Tables
Table 1. Federal Funding for the Ryan White CARE Act . . . . . . . . . . . . . . . . . . 5

AIDS: The Ryan White CARE Act
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act
makes federal funds available to metropolitan areas and states to provide a number
of health care services for AIDS patients including medical care, drug treatments,
dental care, home health care, and outpatient mental health and substance abuse
treatment. The act is administered by the Health Resources and Services
Administration (HRSA) of the Department of Health and Human Services (HHS).
The act is commonly identified by its legislative Titles I, II, III, and IV. It was
enacted as Title XXVI of the Public Health Service (PHS) Act and codified as Parts
A, B, C, D, E, and F under 42 U.S.C. § 300ff-111. Funding for the individual titles
appears at the end of the report.
Title I/Part A — Emergency Relief Grant Program
Title I provides funds to eligible metropolitan areas (EMAs) with a population
of at least 500,000 that have had more than 2,000 reported AIDS cases in the prior
five years. Services supported by Title I grants include community-based outpatient
medical and dental care, rehabilitative services, home health and hospice care,
transportation and housing assistance, nutrition services, and respite care. The
program is intended to assist low-income or under-insured people living with HIV.
A portion of each grant must be spent on services for women, infants and children
with HIV disease. In FY1991, the first year Title I grants were awarded, 16 EMAs
were identified; by FY2002, the number of EMAs had increased to the current total
of 51.1
About half of the Title I appropriation is distributed through formula grants, and
the remaining half is distributed via discretionary supplemental grants awarded on
the basis of need. Currently, formula grants are distributed to EMAs in proportion
to the estimated number of living AIDS cases in each EMA. The number of living
AIDS cases is estimated from the number of reported AIDS cases over a 10-year
period with weighting factors to reflect that not all reported cases are still alive.
Under the 2000 reauthorization (P.L. 106-345), statistics on HIV cases, rather than
only on AIDS cases, would be used in the formula for determining Title I grant
amounts as early as FY2005 — if the Secretary of HHS finds the HIV incidence data
are sufficiently accurate and reliable. In June 2004, the Secretary determined that
HIV case reporting is incomplete and cannot be used to distribute CARE Act grants.
Under P.L. 106-345, however, cases of HIV disease will be used for determining
FY2007 Title I grant amounts.
The hold harmless provision in Title I added in 1996 and changed in 2000 by
P.L. 106-345 resulted in some EMAs receiving lower funding. Under the hold
1 A list of the 51 Title I EMAs is at [http://hab.hrsa.gov/programs/factsheets/title1fact.htm].

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harmless provision in P.L. 106-345, an EMA cannot receive less than a percentage
of the Title I formula grant it received in a base year, protecting grantees from large
decreases in funding. The base year can be different for each EMA. For an EMA
facing a reduction in its formula grant, the base year is the year before the reduction.
In the first year after the base year, the EMA cannot receive less than 98% of what
it received in a base year. By the fifth year, an EMA cannot receive a formula grant
that is less than approximately 87% of what it received in the base year if HIV
incidence data are included in the distribution formula, or 85% of what an EMA
received in the base year if HIV incidence data are not used in the fifth year. The
hold harmless provision no longer applies when an EMA’s grant through the formula
is equal to or exceeds its hold harmless amount. The hold harmless provision is
funded with money that would have been distributed through Title I supplemental
grants.
Title I grants are made to the chief elected official of the city or county in the
EMA that administers the health agency providing services to the greatest number of
persons with HIV. The official must establish an HIV Health Services Planning
Council, which sets priorities for care delivery according to federal guidelines. The
Council may not be directly involved in the administration of any Title I grant.
Membership of the Council must reflect the ethnic and racial make-up of the local
HIV epidemic.
Title II/Part B — Care Grant Program
Title II awards formula grants to states and territories for home and community-
based health care and support services. Services must be accessible to low-income
individuals. Many states use Title II funds to provide services directly or through
subcontracts with HIV care consortia. Consortia are associations of public and
nonprofit health care and support service providers that assess needs and deliver
services to individuals with HIV. Title II grants are also used to provide (1) health
insurance coverage for low-income persons through Health Insurance Continuation
Programs; and, (2) drug treatments under the AIDS Drug Assistance Programs
(ADAPs) for individuals with HIV who cannot afford to pay for drugs and have
limited or no coverage from private insurance or Medicaid.2
The basic Title II grants are awarded based on a formula that takes into account
two factors: (1) each state’s proportion of the estimated number of living AIDS
cases (both inside and outside of Title I EMAs); and (2) each state’s proportion of the
estimated number of living AIDS cases in the state who are not in a Title I EMA.
The first factor is given a greater weight (.80) relative to the second factor (.20) when
determining the Title II grant amount. Estimated cases of people living with AIDS
in EMAs are included in both the allocation formula for Title I and for Title II. As
a result, states with EMAs receive a larger amount of money, per case, than states
without an EMA.3
2 For more on Title II progams, see [http://hab.hrsa.gov/programs/factsheets/titleiifact.htm].
3 U.S. Government Accountability Office. Ryan White CARE Act: Factors that Impact HIV
and AIDS Funding and Client Coverage
. GAO-05-841T. June 2005.

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Under P.L. 106-345, statistics on HIV cases rather than AIDS cases would be
used in the formula for determining Title II grant amounts by FY2005, but only if the
Secretary of HHS determines that the HIV incidence data are sufficiently accurate
and reliable. In June 2004, the Secretary determined that HIV case reporting is
incomplete and cannot be used to distribute CARE Act grants. Starting in FY2007,
cases of HIV disease are to be used for determining Title II grants.
Two provisions can increase the basic Title II grant amount a state or territory
receives above what it would receive as a result of the formula alone. A minimum
grant provision dictates that no state shall receive less than $200,000 if it has less
than 90 estimated living cases of AIDS or $500,000 if it has more than 90 estimated
living cases of AIDS. A hold harmless provision dictates that a state shall not receive
a grant that is less than a specified percentage of what it received in FY2000. These
two provisions are funded by reducing the grant amounts received by all states and
territories that do not receive a minimum grant amount or hold harmless grant
amount. States with more than 1% of the total AIDS cases reported nationally must
contribute state matching funds based on a formula. Grants may not be made to any
state that does not make a good faith effort to notify a spouse of an HIV-infected
patient that the spouse should seek testing. States must use a portion of each Title
II grant on services for women, infants and children with AIDS.
P.L. 106-345 created a supplemental grant for states with metropolitan areas in
which 500 to 1,999 cases of AIDS have been reported in the five most recent
calendar years. These areas do not qualify for Title I funding. Approximately 0.1%
of Title II funds are distributed among these “emerging communities.” Half of the
money is distributed among emerging communities with between 500 and 999
reported cases, and half is distributed among emerging communities with 1,000 to
1,999 reported cases. The grant is based on each area’s proportion of the total
number of cases in all eligible areas.
P.L. 106-345 changed the way funds would be allocated to states for the AIDS
Drug Assistance Programs (ADAPs). Prior to P.L. 106-345, ADAP funds were
distributed among states based on each state’s proportion of AIDS cases. Under P.L.
106-345, a new grant program distributes 3% of ADAP funds to states that
demonstrate a severe need to increase the availability of drugs. Criteria for awarding
these grants are developed by the Secretary, taking into account eligibility standards,
formulary composition, and the number of HIV-positive individuals not receiving
drugs who are at or below 200% of the federal poverty level. The remaining 97% of
ADAP funds are distributed based on each state’s proportion of AIDS cases. Many
states have implemented cost containment measures, such as waiting lists, due to
insufficient ADAP funds. On June 23, 2004, the Bush Administration announced a
$20 million initiative for 10 states with ADAP waiting lists (Alabama, Alaska,
Colorado, Idaho, Iowa, Kentucky, Montana, North Carolina, South Dakota, and West
Virginia); funding for the initiative was not renewed. According to the National
Alliance of State and Territorial AIDS Directors, as of February 2006, almost 800
individuals were on ADAP waiting lists in nine states.4
4 The National Alliance of State and Territorial AIDS Directors and the Henry J. Kaiser
(continued...)

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Title III/Part C — Early Intervention Services
Title III provides early intervention grants to public and private nonprofit
entities already providing primary care services to low-income and medically
underserved people at risk for HIV. Title III grants are awarded to community and
migrant health centers, homeless programs, local health departments, family planning
programs, hemophilia diagnostic and treatment centers and other nonprofit
community-based programs. Title III services include HIV testing, risk reduction
counseling, case management, outreach, medical evaluation, transmission prevention,
oral health, nutritional and mental health services, and clinical care.
Title IV/Part D — General Provisions
In its original enactment, Title IV authorized a number of different HIV-related
programs; only one was ever funded: the pediatric demonstration grants. In the
CARE Act’s 1996 reauthorization, the pediatric demonstration grant program was
replaced with a program of grants for coordinated services and access to research for
women, infants, children, and youth. The grants enhance access to and linkage with
clinical research supported by the National Institutes of Health (NIH), and are to be
made in coordination with the NIH activities. The grants provide opportunities for
women, infants, children, and youth to be voluntary participants in research of
potential clinical benefit to individuals with HIV. Such individuals are provided
health care on an outpatient basis, case management, referrals, transportation, child
care, and other incidental services to enable participation.
Part E
Part E authorizes grants for emergency response employees and establishes
procedures for notifications of infectious diseases exposure; Part E has never been
funded.
Part F — Demonstration and Training
Part F provides support for the Special Projects of National Significance (SPNS)
Program, the AIDS Dental Reimbursement (ADR) Program and the AIDS Education
and Training Centers (AETCs). The SPNS program awards grants to public and
nonprofit private entities for the development of innovative models of HIV/AIDS
care, especially programs that deliver care to minority and hard-to-reach populations.
Under current statute, the SPNS program is to be funded, up to $25 million, from
amounts appropriated for Titles I, II, III, and IV. However, beginning in FY2003,
each Labor-HHS Appropriation bill has provided $25 million for the SPNS program
via a funding mechanism known as the “PHS evaluation tap.” The tap, authorized
under section 241 of the PHS Act, transfers money among PHS agencies for
4 (...continued)
Family Foundation, National ADAP Monitoring Project Annual Report, March 2006
[http://www.kff.org/hivaids/7464.cfm].

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particular activities as specified by the appropriators.5 The ADR program reimburses
dental schools for their treatment of AIDS patients. The AETC program provides
training for health providers in the prevention of perinatal HIV transmission and
prevention and treatment of opportunistic infections. Both the dental and the AETC
programs were transferred legislatively from Title VII of the PHS Act.
Table 1. Federal Funding for the Ryan White CARE Act
($ in millions)
(ADAP)
Part F
Part F
Title I
Title II
(non-add)
Title III
Title IV Part E AETC
ADR
Total
FY1991
87.8
87.8

44.9
19.5
0
17.0

257.0
FY1992
121.6
107.6

48.7
19.3
0
16.9

314.1
FY1993
184.8
115.3

48.0
20.9
0
16.4

385.4
FY1994
325.5
183.9

48.0
22.0
0
16.4
7.0
602.8
FY1995
356.5
198.1

52.0
26.0
0
16.3
6.9
655.8
FY1996
391.7
260.8
(52)
57.0
29.0
0
12.0
6.9
757.4
FY1997
449.8
417.0
(167)
69.6
36.0
0
16.3
7.5
996.3
FY1998
464.7
542.8
(285.5)
76.2
40.8
0
17.2
7.8
1,150.2
FY1999
505.0
737.7
(461.0)
94.3
46.0
0
20.0
7.8
1,410.9
FY2000
546.3
823.8
(528.0)
138.4
50.0
0
26.6
8.0
1,594.6
FY2001
604.2
910.9
(589.0)
185.9
65.0
0
31.6
10.0
1,807.6
FY2002
619.4
977.2
(639.0)
193.8
71.0
0
35.3
13.5
1,910.2
FY2003*
618.7
1,053.4
(714.3)
198.4
73.6
0
35.6
13.4
1,993.0
FY2004*
615.0
1,085.9
(748.9)
197.2
73.1
0
35.3
13.3
2,019.9
FY2005*
610.1
1,121.8
(787.5)
195.6
72.5
0
35.1
13.2
2,048.3
FY2006**
604.0
1,120.5
(789.5)
193.6
71.8
0
34.7
13.1
2,037.7
FY2007
Request***
604.0
1,190.5
(789.5)
218.6
71.8
0
34.7
13.1
2,132.7
Source: FY2005 and FY2006 Conference amounts are found in the Conference Report for H.R. 3010
(H.Rept. 109-337). FY2006 and FY2007 Request amounts found in the HRSA FY2007 Justification
document. May not add due to rounding.
Note: The total does not include $25 million for SPNS provided via the PHS program evaluation tap
(section 241 of the PHS Act).

**FY2006 amount includes the 1% rescission and does not include the $25 million for SPNS.
**FY2007 request does not include $25 million for SPNS.
5 Although section 241 [42 USC 238j] states that the evaluation tap should be no more than
1% of PHS program appropriations, the conference reports for the LHHS Appropriation acts
have set the tap at not more than 2.1% in FY2003 (H.Rept.108-10), 2.2% in FY2004
(H.Rept.108-401), 2.4% in FY2005 (H.Rept.108-792), and 2.4% in FY2006 (H.Rept.
109-337).

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Reauthorization
The CARE Act was signed into law in 1990 (P.L. 101-511) and reauthorized
and amended in 1996 (P.L. 104-146) and 2000 (P.L. 106-345). P.L. 106-345 retained
the basic structure of the Ryan White CARE Act but changed the formulas used to
distribute Title I and Title II grants. Additional changes made by P.L. 106-345 to the
CARE program included the following: (1) requirements were established for the
development of epidemiologic measures to identify HIV-infected individuals not
currently in care; (2) incentives were provided to states for HIV testing of pregnant
women and infants; (3) incentives were established for implementing a partner
notification program; (4) requirements were set for the development of quality
management programs; (5) requirements were established for the development of a
plan for the medical case management of HIV-positive prisoners who are released
from custody; (6) requirements were included regarding the development of rapid
HIV tests; (7) and additional grants were provided to metropolitan areas with
between 500 and 1,999 reported cases of AIDS over the previous five-year period.
In P.L. 106-345, Congress asked that the Institute of Medicine (IOM) to assess
whether current allocation strategies equitably and efficiently distribute CARE Act
funds to areas with the greatest need, and whether quality of care can be refined and
expanded. IOM published the study, Measuring What Matters, in 2004.6 IOM
evaluated whether the HIV case data reported by the states to the Centers for Disease
Control and Prevention are sufficiently accurate and reliable for inclusion in the Title
I and II formula grants, and found that states are not equally capable of providing
high-quality HIV data. IOM made three recommendations based on this finding:
that HRSA continue to use estimated living AIDS cases in the formulas for at least
the next four years, that efforts to improve the quality of HIV data continue, and that
additional studies be conducted to examine the comparability of HIV reporting data
across states for the purpose of allocating resources. IOM also evaluated how
effectively CARE Act programs provide funds to areas of severe need. Factors other
than estimated living AIDS cases are used to assess severity of need — HRSA has
relied on a qualitative assessment process. IOM recommended methods of
incorporating a more quantitative measure of resource needs within the grant
application process. Lastly, IOM evaluated the efforts by HRSA and CARE Act
grantees to incorporate improvements in the quality of care received by HIV-infected
individuals. IOM found that, overall, HRSA and the clinics and programs funded by
the CARE Act are doing an admirable job of defining, assessing and trying to
improve the quality of patient care. However, IOM recommended additional steps
to measure and improve quality of care.
In July 2005, the Bush Administration released a set of five reauthorization
principles: serve the neediest first, focus on life-extending services, increase
prevention efforts, increase accountability, and increase flexibility.7 The
6 Institute of Medicine, Measuring What Matters: Allocation, Planning, and Quality
Assessment for the Ryan White CARE Act
, The National Academies Press, Washington, DC,
2004.
7 Fact Sheet, Ryan White Care Act Reauthorization Principles, July 27, 2005, found at
(continued...)

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administration also made a number of specific proposals: 75% of CARE Act funds
should be spent on core medical services; a priority list of core HIV/AIDS
medications for federal funding should be developed; the hold harmless provisions
should be eliminated; double counting of HIV/AIDS cases between states and
metropolitan areas should be eliminated; and unallocated balances should revert to
the Secretary of HHS for redistribution to states with the greatest need.
A study released in February 2006 by the Government Accountability Office
(GAO) examined the potential impact of implementing changes to the distribution
of funds under the CARE Act.8 GAO found that several provisions in the CARE Act
formulas result in funding that is not comparable per AIDS case across state lines.
These provisions include using an estimate of AIDS cases in each area rather than
counts of individuals with HIV disease, the hold harmless provisions in Title I and
Title II, minimum grant amounts, counting the same cases in more than one formula,
and “grandfathering” EMAs into Title I after they would otherwise cease to qualify.
GAO found that if 2004 grants had been based on reported cases of HIV disease,
funding would have shifted to grantees in the South and Midwest, although some
grantees would have received greater funding, and some would have received less
funding in all regions of the country. As much as 13% of 2004 funds would have
shifted jurisdictions, if grants were based on HIV disease and if the hold harmless
and minimum grant provisions were maintained. Up to 24% of 2004 funds would
have shifted jurisdictions if grants were based on HIV disease absent the hold
harmless and minimum grant provisions. Though most jurisdictions have HIV
reporting systems, these systems vary with respect to maturity and methodology.
GAO found that 2004 CARE Act funds would have shifted to jurisdictions with more
mature HIV reporting systems.
A study released in April 2006 by GAO examined the prices states pay for drugs
used by ADAPS.9 ADAPS are eligible to purchase drugs at a discount through a
federal drug pricing program under Section 340B of the Public Health Service Act.
The GAO study found that some ADAPs reported prices to HRSA that were higher
than the discounted 340B prices. However, because the reported prices do not reflect
whether ADAPs may have received a 340B rebate from the drug manufacturer, the
information HRSA has from the ADAPs is incomplete. Although HRSA is
responsible for monitoring whether ADAPs obtain the best possible prices for drugs,
GAO found that HRSA does not routinely compare the drug prices ADAPs report
with the 340B prices. In addition, GAO found that 340B prices were higher for some
drugs than the prices available under other federal drug pricing programs. In order
to ensure that ADAPs are obtaining the best prices for drugs, GAO recommended
that HRSA require ADAPs to report complete pricing information, including rebates,
and that HRSA routinely determine if these prices are at or below the 340B prices.
7 (...continued)
[http://www.hhs.gov/news/press/2005pres/ryanwhite.html].
8 U.S. Government Accountability Office, HIV/AIDS: Changes Needed to Improve the
Distribution of Ryan White CARE Act and Housing Funds
, GAO-06-332, February 2006.
9 U.S. Government Accountability Office, Improved Oversight Needed to Ensure AIDS Drug
Assistance Programs Obtain Best Prices for Drugs
, GAO-06-646, April 2006.

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Legislation
S. 2339 (Coburn), introduced in February 2006, would implement many of the
specific proposals included in the administration principles. S. 2339 would require
grantees to spend not less than 75% of CARE Act funds on primary medical care; it
would require the Secretary of HHS to issue guidelines for the therapeutics to be
included on ADAP formularies; it would phase out hold harmless provisions; it
would change the data used in formula grants from estimated living cases of AIDS
to reported (or in some cases, estimated) cases of HIV disease; it would eliminate
double counting in the funding formulas by (a) including only non-Title I cases in the
Title II formula and (b) eliminating the emerging communities grants. In addition,
S. 2339 would change the eligibility requirements for Title I metropolitan areas,
expand the purpose of CARE act funds to include treatment for hepatitis B and
hepatitis C in people co-infected with HIV; and it would require routine rapid HIV
testing of each client who did not opt out of testing, at health facilities or clinics
receiving funding from the Centers for Disease Control and Prevention, the
Substance Abuse and Mental Health Services Administration, the Health Resources
and Services Administration, the Centers for Medicare and Medicaid Services, or any
reproductive health program administered by the Secretary. A companion bill, H.R.
5009 (Weldon), was introduced in March 2006. Other bills (S. 1051 and H.R. 4347)
amend aspects of the CARE Act but do not reauthorize the entire program. crsphpgw