AIDS: The Ryan White CARE Act

AIDS: The Ryan White CARE Act

Order Code 98-476
Updated October 26, 2005
CRS Report for Congress
Received through the CRS Web
AIDS: The Ryan White CARE Act
Judith A. Johnson and Paulette C. Morgan
Domestic Social Policy Division
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). P.L. 106-345, signed
into law in October 2000, reauthorized the act through FY2005. 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
is expected to be introduced during the 109th Congress. CARE Act programs received
$2.02 billion in FY2004 and $2.073 billion in FY2005. The President requested $2.083
billion for FY2006, an increase of $10 million for the AIDS Drug Assistance Program.
This report will be updated periodically.
Background
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 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
Congressional Research Service ˜ The Library of Congress

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awarded, 16 EMAs were identified; by FY2002, the number of EMAs had increased to
a total of 51.1
About half of the Title I appropriation is distributed through formula grants.
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 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
supplemental grants in Title I. The remaining half of Title I funds are distributed via
discretionary supplemental grants that are awarded based on the demonstration of
additional need.
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
1 FY2005 Title I funding amounts for the 51 EMAs can be found at [http://www.hhs.gov/news/
press/2005pres/20050302.html].

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Continuation Programs; and, (2) drug treatments under the AIDS Drug Assistance
Programs (ADAPs) for individuals with HIV who 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,
the state’s proportion of all estimated living cases, 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
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.
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
2 FY2005 Title II funding amounts can be found at [http://www.hhs.gov/news/press/2005pres/
20050302.html].
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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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. However, 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).
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. The Secretary is required to use a percentage of funds
appropriated under Titles I, II, III, and IV for these grants. 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 Public Health Service Act.

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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 are established for the development of
epidemiologic measures to identify HIV-infected individuals not currently in care; (2)
incentives are provided to states for HIV testing of pregnant women and infants; (3)
incentives are established for implementing a partner notification program; (4)
requirements are set for the development of quality management programs; (5)
requirements are established for the development of a plan for the medical case
management of HIV-positive prisoners who are released from custody; (6) requirements
are included regarding the development of rapid HIV tests; (7) and additional grants are
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) conduct a
study 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 2004.4
IOM evaluated whether the HIV case data reported by the states to the CDC 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.5 The 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
4 Institute of Medicine, Measuring What Matters: Allocation, Planning, and Quality Assessment
for the Ryan White CARE Act, The National Academies Press, Washington, D.C., 2004.
5 Fact Sheet, Ryan White Care Act Reauthorization Principles, July 27, 2005, found at
[http://www.hhs.gov/news/press/2005pres/ryanwhite.html].

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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. Legislation reauthorizing the Ryan White CARE Act is expected
to be introduced during the 109th Congress.
Table 1. Federal Funding for the Ryan White CARE Act
($ in millions)
Part F
Part F
Title I
Title II
(ADAP) 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
Conference**
615.0
1,130.9
(793.9)
197.2
73.1
0
35.3
13.3
2,064.9
FY2005
Comparable***
610.1
1,121.8
(787.5)
195.6
72.5
0
35.1
13.2
2,048.3
FY2006
Request****
610.1
1,131.8
(797.5)
195.6
72.5
0
35.1
13.2
2,058.3
FY2006****
House passed
610.1
1,131.8
(797.5)
195.6
72.5
0
35.1
13.2
2,058.3
FY2006****
Senate report
610.1
1,131.8
(797.5)
195.6
72.5
0
35.1
13.2
2,058.3
Source: DHHS FY2006 Health Resources and Services Administration Justification of Estimates for
Appropriations Committees. May not add due to rounding.
* The total does not include an additional $25 million set-aside for evaluations. The $25 million set-aside
is funded through an evaluation tap of amounts appropriated under the Public Health Service Act
(PHSA). In 2003, the evaluation tap was 2.1%, as specified in conference report H.Rept.108-10; in
2004, the evaluation tap was 2.2%, as specified in conference report H.Rept.108-401.
**FY2005 Conference amounts do not include the 0.80% offset required by P.L.108-447. The FY2005
Conference total does not include an additional $25 million set-aside for evaluations. The $25 million
set-aside is funded through a 2.4% evaluation tap of amounts appropriated under the PHSA, as
specified in conference report H.Rept.108-792.
*** FY2005 Comparable amounts include the 0.80% offset required by PL.108-447. The 2005 Comparable
total does not include an additional $25 million set-aside for evaluations.
**** FY2006 Request, House passed and Senate reported totals do not include an additional $25
million set-aside for evaluations.