[Congressional Record Volume 146, Number 123 (Thursday, October 5, 2000)]
[Senate]
[Pages S10029-S10035]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
RYAN WHITE CARE ACT AMENDMENTS OF 2000
Mr. BROWNBACK. Mr. President, I ask unanimous consent the Chair lay
before the Senate a message from the House of Representatives to
accompany S. 2311.
The PRESIDING OFFICER. The clerk will report.
The assistant legislative clerk read as follows:
Resolved, That the bill from the Senate (S. 2311) entitled
``An Act to revise and extend the Ryan White CARE Act
programs under title XXVI of the Public Health Service Act,
to improve access to health care and the quality of care
under such programs, and to provide for the development of
increased capacity to provide health care and related support
services to individuals and families with HIV disease, and
for other purposes'', do pass with amendments.
Mr. BROWNBACK. I ask unanimous consent the Senate agree to the
amendments of the House of Representatives.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. JEFFORDS. Mr. President, it gives me great pleasure that the
Senate is moving to pass the Ryan White Comprehensive AIDS Resources
and Emergency Act Amendments of 2000, a measure that will reauthorize a
national program providing primary health care services to people
living with HIV and AIDS. I especially want to commend Senators Hatch
and Kennedy for the leadership they have provided since the
inauguration of the legislation establishing the Ryan White programs
over a decade ago. I also want to commend Senator Frist whose medical
expertise played a critical role in key provisions of the bill and
continues to be an invaluable resource to our efforts on the range of
health issues that come before the Senate. I want to recognize Senator
Dodd for his unwavering support for this legislation and people living
with HIV and AIDS. Finally, I want to acknowledge Senator Enzi's
recognition of the growing burden that AIDS and HIV have placed on
rural communities throughout the country and the need to address those
gaps in services.
It is also important that we recognize the dedicated efforts of our
colleagues in the House of Representatives. Chairman Bliley supported
this bill through its passage and provided critical guidance through
the negotiations. Representatives Bilirakis, Coburn, and Waxman have
demonstrated time and time again their commitment to people living with
AIDS and each has worked diligently to find a compromise to ensure the
continued services for people with HIV/AIDS. Representatives Brown and
Dingell have also played important roles in shepherding this bill
through the legislative process.
Since its inception in 1990, the Ryan White program has enjoyed broad
bipartisan support. During the last reauthorization of the Ryan White
CARE Act in 1996, the measure garnered a vote of 97 to 3 on its final
passage. As evidence that strong bipartisan support continues, I am
happy to report that this reauthorization bill was passed unanimously
by this Chamber in June of this year. The bipartisan support for this
important legislation underlines the critical need for the assistance
this Act provides across the Nation.
With this reauthorization, we mark the ten years through which the
Ryan White CARE Act has provided needed health care and support
services to HIV positive people around the country. Titles I and II
have provided much needed relief to cities and states hardest hit by
this disease, while Titles III and IV have had a direct role in
providing healthcare services to underserved communities. Ryan White
program dollars provide the foundation of care so necessary in fighting
this epidemic and have allowed States and communities around the
country to successfully address the needs of people affected by HIV
disease.
In recent months a number General Accounting Office studies have
shown that the CARE Act is providing services and support to people
with HIV who are most in need and most deserving of our help. The GAO
found that CARE Act funds are reaching the infected groups that have
typically been underserved, including the poor, the uninsured, women,
and ethnic minorities. These groups form a majority of CARE Act clients
and are being served by the CARE Act in higher proportions than their
representation in the AIDS population. The GAO also found that CARE Act
funds support a wide array of primary care and support services,
including the provision of powerful therapeutic regimens for people
with HIV/AIDS that have dramatically reduced AIDS diagnoses and deaths.
Previous efforts to improve this legislation have led to incredible
reductions in the number of HIV infected babies being born each year
and, equally important, to increased outreach, counseling, voluntary
testing, and treatment services being provided to women with HIV
infection. Between 1993 and 1998, perinatal-acquired AIDS cases
declined 74 percent in the U.S. In this bill, I have continued to
support efforts to reach women in need of care for their HIV disease
and have included provisions to ensure that women, infants and children
receive resources in accordance with the prevalence of the infection
among them.
The AIDS Drug Assistance Program has been another critical success.
This program has provided people with HIV and AIDS access to newly
developed, highly effective therapeutics. Because of these drugs,
people are maintaining their health and living longer. The AIDS death
rate and the number of new AIDS cases have been dramatically reduced.
From 1996 to 1998, deaths from AIDS dropped 54 percent while new AIDS
cases have been reduced by 27 percent. In this reauthorization bill we
have improved access for underserved and poor communities and increased
support for services that help maximize the impact of these therapies.
Despite our great success, the Ryan White program remains as vital to
the public health of this Nation as it was in 1990 and in 1996. While
the rate of decline in new AIDS cases and deaths is leveling off, HIV
infection rates continue to rise in many areas; becoming increasingly
prevalent in rural and underserved urban areas; and also among
[[Page S10030]]
women, youth, and minority communities. Local and state healthcare
systems face an increasing burden of disease, despite our success in
treating and caring for people living with HIV and AIDS. Rural and
underserved urban areas are often unable to address the complex medical
and support services needs of people with HIV infection. As the AIDS
epidemic continues to expand into these areas across the country, this
legislation will allow us to adapt our care systems to meet the most
urgent needs in the communities hardest hit by the epidemic.
The bill being considered today was developed on a bipartisan basis,
working with other Committee Members, community stakeholders and
elected officials at the state and local levels from whom we sought
input to ensure that we addressed the most important problems facing
communities of people with HIV infection. Finally we have worked
closely with our colleagues in the House of Representatives to produce
this agreement. This morning, our colleagues in the House of
Representatives unanimously passed this legislation that we have before
us. The agreements we have reached with our House colleagues have been
fully explained in an Statement of Explanation and I would like
unanimous consent that this document be printed as part of the Record.
The PRESIDING OFFICER. Without objection, it is so ordered.
(See exhibit 1.)
This bill will double the minimum base funding available to states
through the CARE Act to assist them in developing systems of care for
people struggling with HIV and AIDS. The bill also includes a new
supplemental state grant to target assistance to small and mid-sized
metropolitan areas to help them address the increasing number of people
with HIV/AIDS living outside of urban areas that receive assistance
under Title I of the Act. Rural and underserved areas receive a
preference for planning, early intervention, and capacity development
grants under title III. In order to assist states in expanding access
to appropriate HIV/AIDS therapeutics to low-income people with HIV/
AIDS, a supplemental grant has been added to the AIDS Drug Assistance
Program.
The bill remains primarily a system of grants to State and local
jurisdictions, thereby ensuring that grantees can respond to local
needs. States, EMAs, and the affected communities will still decide how
to best prioritize and address the healthcare needs of their HIV-
positive citizens. This bill reinforces the ability of States and EMAs
to identify and meet local needs.
Finally, in recognition of the changing nature of the epidemic, I
have asked the Institute of Medicine to complete a study of the
financing and delivery of primary care and support services for low
income, uninsured, and under-insured individuals with HIV disease,
within 21 months after the enactment of this Act. Changes in HIV
surveillance and case reporting, and the effects of these changes on
program funding, will be included in this study. The recommendations
from this study will help Congress and the Secretary of Health and
Human Services to ensure the most effective and efficient use of
Federal funds for HIV and AIDS care and support.
I am proud that this bill has progressed through the Congress and
that we will see this bill become law this year. The people struggling
to overcome the challenges of HIV and AIDS must continue to benefit
from high quality medical care and access to lifesaving drugs. We have
made incredible progress in the fight against HIV/AIDS and I want to
ensure that every person in America in need of assistance benefits from
our tremendous advances.
Many groups and individuals have contributed significantly to
crafting this bill, but I want to acknowledge those at the Health
Resources and Services Administration. All of the groups united under
the umbrella of the National Organizations Responding to AIDS (NORA)
deserve recognition. Representing a diverse community of people with
AIDS, CARE Act service providers, and administrative agencies, NORA
clearly and effectively communicated to Congress the needs and
priorities of their constituents.
I also want to thank several staff members who have worked long and
hard to craft this bill and to address the concerns and needs of the
affected communities. Stephanie Robinson and Idalia Sanchez, for
Senator Kennedy, were key to reaching agreement on this bill and have
provided invaluable assistance and support throughout the development
of this legislation. Dave Larson and Mary Sumpter Johnson, of Senator
Frist's office, for their support for the needs of rural and
underserved communities throughout the nation. Similarly, Jeannie
Ireland with Senator Dodd's office, Helen Rhee, working for Senator
DeWine, Libby Rolfe, for Mr. Sessions, and Raissa Geary and Mary Jordan
in Senator Enzi's office, provided valuable input. Without the efforts
of these staff members, we would not have such a strong, well-balanced,
and targeted reauthorization bill before us today. I want to also
express my gratitude and thanks to Bill Baird, Legislative Counsel, who
worked tirelessly to craft legislative language. Finally, I want to
acknowledge the contributions of Sean Donohue and William Oscar Fleming
of my staff who guidance of this effort from the beginning has resulted
in a bill that enjoys broad bipartisan support and which most
importantly meets the pressing needs of people with HIV and AIDS.
Exhibit 1
Ryan White CARE Act Amendments of 2000--Managers' Statement of
Explanation
The Ryan White CARE Act Amendments of 2000 reauthorize
Title XXVI of the Public Health Service Act to ensure that
individuals living with HIV and AIDS receive health care and
related support services. The legislation contains
authorization for appropriations and programmatic changes to
ensure the CARE Act programs respond to evolving demographic
trends in the HIV/AIDS epidemic and advances in treatment and
care.
In March, 1990, Congress enacted the Ryan White CARE Act,
honoring Ryan White, a young man who taught the Nation to
respond to the HIV/AIDS epidemic with hope and action rather
than fear. By the spring of 1990, over 128,000 people had
been diagnosed with AIDS in the United States and 78,000 had
died of the disease. The CARE Act was reauthorized in 1996,
as the epidemic spread to more than 600,000 Americans
diagnosed with AIDS and amidst the nationwide recognition
that CARE Act programs were indispensable to the care and
treatment of Americans with HIV/AIDS.
The CARE Act Amendments of 2000 marks the second
reauthorization of the CARE Act. In the last twenty years,
the HIV/AIDS epidemic has claimed over 420,000 American men,
women, and children. Today, the Centers for Disease Control
and Prevention estimates that there are currently between
800,000 and 900,000 persons living with HIV in the United
States, with 40,000 new infections annually.
While there is still no cure, the CARE Act has been
instrumental in responding to the public health, social and
economic burdens of the HIV/AIDS epidemic. However, the
steady expansion and changed demographics of the epidemic, as
well as the improved survival time for people living with
AIDS, are placing increasing stress on State and local health
care systems, community based organizations and families
providing care. Most importantly, the epidemic is expanding
beyond major cities to smaller cities and rural regions, and
disproportionately affecting women, communities of color,
children and youth.
The Ryan White CARE Act Amendments of 2000 preserves the
best and proven features of existing CARE Act programs. But
the CARE Act Amendments of 2000 also makes important and
substantial reforms to respond to the significant changes in
the HIV/AIDS epidemic of the last 5 years.
The Organization of Services Under the CARE Act Amendments
of 2000 is as follows:
Title I. Emergency Relief for Areas with Substantial Need
for Services: Provides emergency relief grants to 51 eligible
metropolitan areas (EMAs) disproportionately affected by the
HIV epidemic to provide primary care and HIV-related support
services to people with HIV and AIDS. Half of the Title I
funding is distributed by formula; the remaining half is
distributed competitively, based on the demonstration of
severity of need and other criteria.
Planning Council membership has been revised to include HIV
prevention providers, homeless and housing service providers,
and representatives of prisoners. A third of Planning Council
members must be individuals with HIV/AIDS receiving care who
are not officers, employees or consultants to Title I
grantees.
Title II. CARE Grant Program: Provides formula grants to
States, District of Columbia, Puerto Rico and U.S.
Territories to improve the quality of health care and support
services for individuals with HIV disease and their families.
The funds are used: to provide medical support services, to
continue health insurance payments, to provide home care
services, and, through the AIDS Drug Assistance Programs
(ADAP), to provide medications necessary for the care of
these individuals. Supplemental formula grants are awarded to
States with ``emerging communities'' which are ineligible for
grants under Title I.
[[Page S10031]]
Subtitle B provides discretionary grants to States for the
reduction of perinatal transmission of HIV, and for HIV
counseling, testing, and outreach to pregnant women. Subtitle
C provides discretionary grants to States for partner
notification, counseling and referral services.
Title III. Early Intervention Services: Funds nonprofit
entitles providing primary care and outpatient early
intervention services, including case management, counseling,
testing, referrals, and clinical and diagnostic services to
individuals diagnosed with HIV. The unfunded program of State
formula grants in current law is repealed.
Title IV. Other Programs and Activities: Provides grants
for comprehensive services to children, youth, and women
living with HIV and their families. Such services include
primary, specialty and psychosocial care, as well as HIV
outreach and prevention activities. Grantees must demonstrate
linkages to, and provide clients with access and education
on, HIV/AIDS clinical research.
Title IV newly authorizes the AIDS Education and Training
Centers (AETC), a network of 14 regional centers conducting
clinical HIV education and training of health providers, to
provide prenatal and gynecological care. The HIV/AIDS Dental
Reimbursement program, covering uncompensated oral health
care for patients with HIV/AIDS, is expanded to provide
community-based care in underserved areas.
Under Subtitle B, general provisions authorize CDC data
collection of CARE Act planning and evaluation, enhanced
interagency coordination of HIV services and prevention,
development of a plan for the case management of prisoners
with HIV, and administrative provisions related to audits,
and a plan for simplification of CARE Act grant
disbursements.
Title V. General Provisions: Authorizes Institute of
Medicine (IOM) studies and expansion of Federal support for
the development of rapid HIV tests. Makes necessary and
technical corrections in Title XXVI of the Public Health
Service Act.
A summary of selected provisions is as follows:
Use of HIV Case Data in Formula Grants: In order to target
funding more accurately to reflect the HIV/AIDS epidemic, the
Managers have revised and updated the Title I and Title II
formulas to make use of data on cases of HIV infection as
well as of AIDS. In Fiscal Year (FY) 2005, HIV and AIDS case
data is intended to be used in the Title I and Title II
formulas.
However, no later than July 1, 2004, the Secretary shall
determine whether HIV case data, as reported to and confirmed
by the Director of CDC, is sufficiently accurate and reliable
from all eligible areas and States for such use in the
formula. The Secretary shall also consider the findings of
the Institute of Medicine (IOM) study undertaken under
section 501(b).
If the Secretary makes an adverse determination regarding
HIV case data, the Managers intend that only AIDS case data
will be used in FY2005 formula allocations. The Secretary
shall also provide grants and technical assistance to States
and eligible areas to ensure that accurate and reliable HIV
case data is available no later than FY2007.
Planning and priority setting: The Managers have
strengthened the capacity of EMAs and States to plan,
prioritize, and allocate funds, based on the size and
demographic characteristics of the populations with HIV
disease in the eligible area. Planning, priority setting, and
funding allocation processes must take into account the
demographics of the local HIV/AIDS epidemic, existing
disparities in access HIV-related health care, and resulting
adverse health outcomes. It is the intent of the Managers
that CARE Act dollars more closely follow the shifting trends
in the local epidemic and address disparities in health care
access and health outcomes as well as the need for capacity
development within the local and State HIV health care
infrastructures.
The Managers intend both EMAs and States to develop
strategies to bring into and retain in care those individuals
who are aware of their HIV status but are not receiving
services. As part of this process, the Managers place the
highest priority on EMAs and States focusing on eliminating
disparities in access and services among affected
subpopulations and historically underserved communities. The
Managers recognize, however, that the relative availability
or lack of HIV prevalence data will be reflected in the
scope, goals, timetable and allocation of funds for
implementation of the strategy.
The Managers also expect the Secretary to collaborate with
Titles I and II grant recipients and providers to develop
epidemiologic measures and tools for use in identifying
persons with HIV infection who know their HIV status but are
not in care. The Managers recognize the difficulty the EMAs
and States may experience in identifying persons with HIV
infection who are not in care and who may be unknown to any
health or social support system. The efforts on the part of
EMAs and States to accomplish these important tasks, however,
should not be delayed until this process is complete.
Instead, the Managers expect Titles I and II grant recipients
to establish and implement strategies responsive to these
urgent needs before the development of nationally uniform
measures, to the extent that is practicable and to which
necessary prevalence data is reasonably available.
The Managers have also authorized outreach activities in
Titles I and II intended to identify individuals with HIV
disease know their HIV status but are not receiving services.
The intent is to ensure that EMAs and States understand that
outreach activities which are consistent with early
intervention services and necessary to implement the
aforementioned strategies, are appropriate uses of Titles I
and II funds. It is not the Managers' intent that such
activities supplant or otherwise duplicate activities such as
case finding, surveillance and social marketing campaigns
currently funded and administered by the Centers for Disease
Control and Prevention (CDC). Instead, this authorization
reflects the urgency of increasing the coordination between
HIV prevention and HIV care and treatment services in all
CARE Act programs.
Hold harmless provisions: The hold-harmless provisions are
intended to minimize loss and stabilize systems of care in
EMAs and States, while assuring that funds are allocated in
Titles I and II to reflect the current distribution and
epidemiology of the epidemic.
The Managers have revised the Title I hold harmless to
limit a potential loss in an EMA's formula allocation to a
small percentage of the amount allocated to the eligible area
in the previous (or base) year. An EMA may lose no more than
15 percent of its base formula allocation over five years,
beginning with 2 percent in the first year and increasing in
subsequent years. If the Secretary determines that data on
HIV prevalence are accurate and reliable for use in
determining Title I formula grants for Fiscal Year 2005, all
EMAs may lose no more than 2 percent of their Fiscal Year
2004 formula allocation in that year.
Should an EMA experience a decline in its Title I formula
allocation followed by an intervening year in which there is
no decline, its losses in any subsequent, nonconsecutive year
of decline would once again be limited to 2 percent (i.e.,
the intervening year ``resets the clock'').
The Managers intend to ensure that essential primary care
and support services are not compromised by short-term
fluctuations in AIDS case counts. Because no new EMA is
expected by HRSA's Bureau of HIV/AIDS to require the hold
harmless in the first three or four years of this
reauthorization period, the Managers expect this policy will
shield all eligible areas, save those currently requiring the
hold harmless, from any meaningful loss in Title I formula
funding.
Under the Title II holds harmless, a State or territory may
lose no more than 1 percent from the previous fiscal year
amounts, or 5 percent over the 5-year reauthorization period.
This protection extends to base Title II funding (which
excludes funds for AIDS Drug Assistance Programs (ADAP)), as
well as to overall Title II funding.
Women, child, infants, and youth set-aside: The Managers
are aware of the rising incidence of HIV among youth and
women, particularly women of color, and recognize the
challenges in assuring them access to primary care and
support services for HIV and AIDS. The Managers intend to
increase the availability of primary care and health-related
supportive services under Title I and Title II for each of
the four groups described in the set-aside. Youth are added
as a new category within this set-aside. The Managers intend
the term ``youth'' to include persons between the ages of 13
and 24, and ``children'' to include those under the age of
13, including infants.
The Managers clarify that the set-asides for women,
infants, children, and youth with HIV disease be allocated
proportionally, based on the percentage of the local HIV-
infected population that each group represents. The Managers
intend that the States and EMAs continue to make every effort
to reach and serve women, infants, children, and youth living
with HIV/AIDS by allocating sufficient resources under Titles
I and II to serve each of these populations. The Managers
also recognize that these priority populations often comprise
a greater proportion of HIV cases rather than AIDS cases in a
local area. This distinction should be taken into account
where necessary prevalence data is reasonably available.
The Managers are aware that these populations may also have
access to HIV care through other parts of Title XXVI,
Medicaid, State Children's Health Insurance Program (SCHIP),
and other Federal and State programs. Therefore, the
requirement to proportionally allocate funds provided under
Title II to each of these populations may be waived for
States which reasonably demonstrate that these populations
are receiving adequate care.
Capacity development: Titles I, II and III of this
legislation provide a new focus on strengthening the capacity
of minority communities and underserved areas where HIV/AIDS
is having a disproportionate impact. Currently, many
underserved urban and rural areas are not able to compete
successfully for planning grants and early intervention
service grants due to the lack of infrastructure and
experience with the Ryan White CARE Act programs. This gap in
services available is increasingly important, as the HIV and
AIDS epidemic extends into rural communities. In addition to
authorizing capacity development under Titles I and II, the
Managers establish a preference for rural areas under Title
III that will allow program administrators to target capacity
development grants, planning grants, and the delivery of
primary care services to rural communities with a growing
need for HIV
[[Page S10032]]
services. However, urban areas are not excluded from
consideration for future grants nor is funding reduced to
current grants in urban areas.
Quality management: The Managers recognize the importance
of having CARE Act grantees ensure that quality services are
provided to people with HIV and that quality management
activities are conducted on an ongoing basis. Quality
management programs are intended to serve grantees in
evaluating and improving the quality of primary care and
health-related supportive services provided under this act.
The quality management program should accomplish a threeford
purpose: (1) assist direct service medical providers funded
through the CARE Act in assuring that funded services adhere
to established HIV clinical practices and Public Health
Service (PHS) guidelines to the extent possible; (2) ensure
that strategies for improvements to quality medical care
include vital health-related supportive services in achieving
appropriate access to and adherence with HIV medical care;
and (3) ensure that available demographic, clinical, and
health care utilization information is used to monitor the
spectrum of HIV-related illnesses and trends in the local
epidemic.
The Managers expect the Secretary to provide States with
guidance and technical assistance for establishing quality
management programs, including disseminating such models as
have been developed by States and are already being utilized
by Title II programs and in clinical practice environments.
Furthermore, the Managers intend that the Secretary provide
clarification and guidance regarding the distinction between
use of CARE Act funds for such program expenditures that are
covered as either planning and evaluation and funds for
program support costs. It is not the Managers' intent to
divert current program resources or to reassign current
program support costs or clinical quality programs to new
cost areas, if they are an integral part of a State's current
quality management efforts.
Program support costs are described as any expenditure
related to the provision of delivering or receiving health
services supported by CARE Act funds. As applied to the
clinical quality programs, these costs include, but are not
limited to, activities such as chart review, peer-to-peer
review activities, data collection to measure health
indicators or outcomes, or other types of activities related
to the development or implementation of a clinical quality
improvement program. Planning and evaluation costs are
related to the collection and analysis of system and process
indicators for purposes of determining the impact and
effectiveness of funded health-related support services in
providing access to and support of individuals and
communities within the health delivery system.
Early intervention services: The Managers authorize early
intervention services as eligible services under Titles I and
II under certain circumstances. The Managers intend to allow
grantees to provide certain early intervention services, such
as HIV counseling, testing, and referral services, to
individuals at high risk for HIV infection, in accordance
with State or EMA planning activities. The Managers recognize
the range of organizations that may be eligible to provide
early intervention services, including other grantees under
titles I, II and III such as community based organizations
(CBOs) that act as points of entry into the health care
system for traditionally underserved and minority
populations.
The Managers believe that referral relationships maintained
by providers of early intervention services are essential to
increasing the numbers of people with HIV/AIDS who are
identified and to bringing them into care earlier in the
progression of their disease.
Health-care related support services: The Managers wish to
stress the importance of CARE Act funds in meeting the health
care needs of persons and families with HIV disease. The Act
requires support services provided through CARE Act funds to
be health care related. States and EMAs should ensure that
support services meet the objective of increasing access to
health care and ongoing adherence with primary care needs.
The Managers reaffirm the critical relationship between
support service provision and positive health outcomes.
Title I planning council duties and membership: The
Managers have amended numerous aspects of CARE Act programs
to enhance the coordination between HIV prevention and HIV/
AIDS care and treatment services. In this case, Planning
Council membership of the providers of HIV prevention
services will help assure this coordination. To improve
representation of underserved communities, providers of
services to homeless populations and representatives of
formerly incarcerated individuals with HIV disease are
included in planning council membership. It is the intent of
the Managers that the needs of all communities affected by
HIV/AIDS and all providers working within the service areas
be represented. The Managers also intend the Planning
Councils more adequately reflect the gender and racial
demographics of the HIV/AIDS population within their
respective EMAs.
The Managers also intend that patients and consumers of
Title I services constitute a substantial proportion of
Planning Council memberships. The prohibited of officers,
employees and consultants is not intended to impede the
participation of qualified, motivated volunteers with Title I
grantees from serving on Planning Councils where they do not
maintain significant financial relationships with such
grantees. In contrast to such significant financial
relationships, volunteers may be reimbursed reasonable
incidental costs, including for training and transportation,
which help to facilitate their important contribution to the
Planning Councils.
To ensure that new Planning Council members are adequately
prepared for full participation in meetings, the Managers
direct the Secretary to ensure that proper training and
guidance is provided to members of the Councils. The Managers
also expect Planning Councils to provide assistance, such as
transportation and childcare, to facilitate the participation
of consumers, particularly those from affected subpopulations
and historically underserved communities.
Consistent with the ``sunshine'' policies of the Federal
Advisory Committee Act (FACA), all meetings of the Planning
Councils shall be open to the public and be held after
adequate notice to the public. Detailed minutes, records,
reports, agenda, and other relevant documents should also be
available to the public. The Managers intend for such
documents to be available for inspection and copying at a
single location, including posting on the Internet.
Title I supplemental: In order to target funding to areas
in greatest need of assistance, severity of need is given a
greater weight of 33 percent in the award of Title I
supplemental grants. The Managers intend that Title I
supplemental awards are not intended to be allocated on the
basis of formula grant allocations. Instead, such
supplemental awards are to be directed principally to those
eligible areas with `severe need,'' or the greatest or
expanding public health challenges in confronting the
epidemic. The Managers have included additional factors to be
considered in the assessment of severe need, including the
current prevalence of HIV/AIDS, and the degree of increasing
and unmet needs for services. Additionally, the Managers
believe that syphilis, hepatitis B and hepatitis C should be
regarded as important co-morbidities to HIV/AIDS.
It is the Managers' strong view that HRSA's Bureau of HIV/
AIDS should employ standard, quantitative measures to the
maximum extent possible in lieu of narrative self-reporting
when awarding supplemental awards. The Managers therefore
renew the Bureau's obligation to develop in a timely manner a
mechanism for determining severe need upon the basis of
national, quantitative incidence data. In this regard, the
Managers recognize that adequate and reliable data on HIV
prevalence may not be uniformly available in all eligible
areas on the date of enactment. It is noted, however, that
``HIV disease'' under the CARE Act encompasses both persons
living with AIDS as well as persons diagnosed as HIV positive
who have not developed AIDS.
Title II base minimum funding: The minimum Title II base
award is increased in order to increase the funding available
to States for the capacity development of health system
programs and infrastructure. The Federated States of
Micronesia and the Republic of Palau are included as entities
eligible to receive Title II funds, in recognition of the
need to establish a minimum level of funding to assist in
building HIV infrastructure.
Title II public participation: The Managers urge States to
strengthen public participation in the Ryan White Title II
planning process. While the Managers do not intend that
States be mandated to consult with all entities participating
in the Title I planning process, reference to such entities
is intended to provide guidance to the States that such
entities are important constituencies which the States should
endeavor to include in their planning processes. Moreover,
States may demonstrate compliance with the new requirement of
an enhanced process of public participation by providing
evidence that existing mechanisms for consumer and community
input provide for the participation of such entities. The
intent is to allow States to utilize the optimal public
advisory planning process, such as special planning bodies or
standing advisory groups on HIV/AIDS, for their particular
population and circumstances.
The Managers are also aware of the difficulties that some
States with limited resources may encounter in convening
public hearings over large geographic or rural areas and
encourage the Secretary to work with these States to develop
appropriate processes for public input, and to consider such
limitations when enforcing these requirements.
Title II HIV care consortia: The Manager intend that the
States continue to work with local consortia to ensure that
they identify potential disparities in access to HIV care
services at the local level, with a special emphasis on those
experiencing disparities in access to care, historically
underserved populations, and HIV infected persons not in
care. However, the Managers do not intend that States and/or
consortia be mandated to consult with all entities
participating in the Title I planning process. Rather,
reference to such entities is intended to provide guidance to
the States that such entities are important constituencies
which the States should endeavor to include in their planning
processes.
Title II ``emerging communities'' supplement: There
continues to be a growing need to address the geographic
expansion of this epidemic, and this Act continues the
efforts made during the last reauthorization to direct
resources and services to areas that are
[[Page S10033]]
particularly underserved, including rural areas and
metropolitan areas with significant AIDS cases that are not
eligible for Title I funding. A supplemental formula grant
program is created within Title II to meet HIV care and
support needs in non-EMA areas. There are a large number of
areas within States that do not meet the definition of a
Title I EMA but that, nevertheless, experience significant
numbers of people living with AIDS. This provision stipulates
that these ``emerging communities,'' defined as cities with
between 500 and 1,999 reported AIDS cases in the most recent
5-year period, be allocated 50 percent of new appropriations
to address the growing need in these areas. Funding for this
provision is triggered when the allocations to carry out Part
B, excluding amounts allocated under section 2618(a)(2)(I),
are $20,000,000 in excess of funds available for this part in
fiscal year 2000, excluding amounts allocated under section
2618(a)(2)(I). States can apply for these supplemental awards
by describing the severity of need and the manner in which
funds are to be used.
The Managers intend to acknowledge the challenges faced by
many areas with a significant burden of HIV and AIDS and a
lack of health care infrastructure or resources to provide
HIV care services. This supplemental program allows the
Secretary to make grants to States to address HIV service
needs in these underserved areas. The Managers understand the
necessity to continue to support existing and expanding
critical Title II base services.
AIDS Drug Assistance Program supplemental grant and
expanded services: Under this Act, the AIDS Drug Assistance
Program (ADAP) has been strengthened to assist States in a
number of areas. The Secretary is authorized to reserve 3
percent of ADAP appropriations for discretionary supplemental
ADAP grants which shall be awarded in accordance with
severity of need criteria established by the Secretary. Such
criteria shall account for existing eligibility standards,
formulary composition and the number of patients with incomes
at or below 200 percent of poverty. The Managers also
encourage the Secretary to consider such factors as the
State's ability to remove restrictions on eligibility based
on current medical conditions or income restrictions and to
provide HIV therapeutics consistent with PHS guidelines.
States are also required to match the Federal supplement at
a rate of 1:4. The Managers expect the State to continue to
maintain current levels of effort in its ADAP funding. The
Managers intend that the 25 percent State match required to
receive funds under this section be implemented in a flexible
manner that recognizes the variations between Federal, State,
and programmatic fiscal years.
In addition, up to 5 percent of ADAP funds will be allowed
to support services that directly encourage, support, and
enhance adherence with treatment regimens, including medical
monitoring, as well as purchase health insurance plans where
those plans provided fuller and more cost-effective coverage
of AIDS therapies and other needed health care coverage.
However, up to 10 percent of ADAP funds may be expended for
such purposes if the State demonstrates that such services
are essential and do not diminish access to therapeutics.
Finally, the Managers recognize that existing Federal policy
provides adequate guidelines to states for carrying out
provisions under this section.
Partner notification, perinatal transmission, and
counseling services: Discretionary grants are authorized
under this Act for partner notification, counseling and
referral services. The Managers have also expanded the
existing grant program to States for the reduction of
perinatal transmission of HIV, and for HIV counseling,
testing, and outreach to pregnant woman. Funding for
perinatal HIV transmission reduction activities is expanded,
with additional grants available to States with newborn
testing laws or States with significant reductions in
perinatal HIV transmission. In addition, this Act further
specifies information to be conveyed to individuals receiving
HIV positive test results in order to reduce risk of HIV
transmission through sex or needle-sharing practices.
Coordination of coverage and services: This Act also
strengthens the requirements made on the States and EMAs in a
number of areas aimed at improving the coordination of
coverage and services. Grantees must access the availability
of other funding sources, such as Medicaid and the State
Children's Health Insurance Program (SCHIP) and improve
efforts to ensure that CARE Act funds are coordinated with
other available payers.
Titles II and IV administrative expenses: The
administrative cap for the directly funded Title III programs
is increased. The administrative cap for Title III grants is
raised from 7.5 percent to 10 percent to correspond with the
10 percent cap on individual contractors in Title I. The
Secretary is directed to review administrative and program
support expenses for Title IV, in consultation with grantees.
In order to assure that children, youth, women, and families
have access to quality HIV-related health and support
services and research opportunities, the Secretary is
directed to work with Title IV grantees to review expenses
related to administrative, program support, and direct
service-related activities.
Title IV access to research: This Act removes the
requirement that Title IV grantees enroll a ``significant
number'' of patients in research projects. Title IV provides
an important link between women, children, and families
affected by HIV/AIDS and HIV-related clinical research
programs. The ``significant number'' requirement is removed
here to eliminate the incentive for providers to
inappropriately encourage or pressure patients to enroll in
research programs.
To maintain appropriate access to research opportunities,
providers are required to develop better documentation of the
linkages between care and research. The Secretary of Health
and Human Services (HHS), through the National Institutes of
Health (NIH), is also directed to examine the distribution
and availability of HIV-related clinical programs for
purposes of enhancing and expanding access to clinical
trials, including trials funded by NIH, CDC and private
sponsors. The Managers encourage the Secretary to assure that
NIH-sponsored HIV-related trials are responsive to the need
to coordinate the health services received by participants
with the achievement of research objectives. Nor do the
Managers intend this requirement to require the
redistribution of funds for such research projects.
Part F Dental Reimbursement Program: The Managers have
established new grants for community-based health care to
support collaborative efforts between dental education
programs and community-based providers directed at providing
oral health care to patients with HIV disease in currently
unserved areas and communities without dental education
programs. Although the Dental Program has been tremendously
successful, there is still a large HIV/AIDS population that
has not benefitted because there is not a dental education
institution participating in their area. These patients are
also in need of dental services that could be provided at
community sites if more community-based providers would
partner with a dental school or residency program. In these
partnerships, dental students or residents could provide
treatment for HIV/AIDs patients in underserved communities
under the direction of a community-based dentist who would
serve as adjunct faculty. By encouraging dental educational
institutions to partner with community-based providers, the
Managers intend to address the unmet need in these areas by
ensuring that dental treatment for the HIV/AIDS population is
available in all areas of the country, not just where dental
schools are located.
Technical assistance and guidance: The Managers reaffirm
the Secretary's responsibility in providing needed guidance
and tools to grantees in assisting them in carrying out new
requirements under this Act. The Secretary is required to
work with States and EMAs to establish epidemiologic measures
and tools for use in identifying the number of individuals
with HIV infection, especially those who are not in care. The
legislation requests an IOM study to assist the Secretary in
providing this advice to grantees.
The Managers understand that the Secretary has convened a
Public Health Service Working Group on HIV Treatment
Information Dissemination, which has produced recommendations
and a strategy for the dissemination of HIV treatment
information to health care providers and patients.
Recognizing the importance of such a strategy, the Managers
intend that the Secretary issue and begin implementation of
the strategy to improve the quality of care received by
people living with HIV/AIDS.
Data Collection through CDC: The Managers believe that an
additional authorization for HIV surveillance activities
under the CDC will serve to advance the purposes of the CARE
Act. To better identify and bring individuals with HIV/AIDS
into care, States and cities may use such funding to enhance
their HIV/AIDS reporting systems and expand case finding,
surveillance, social marketing campaigns, and other
prevention service programs. Notwithstanding its strong
interest in improving the coordination between HIV prevention
and HIV care and treatment services, the Managers intend that
this enhanced funding for CDC and its grantees ensure that
CARE Act programs and funds not duplicate or be diverted to
activities currently funded and administered by the CDC.
Coordination: This Act requires the Secretary to submit a
plan to Congress concerning the coordination of Health
Resources and Services Administration (HRSA), Centers for
Disease Control and Prevention (CDC), Substance Abuse and
Mental Health Services Administration (SAMHSA), and Health
Care Financing Administration (HCFA), to enhance the
continuity of care and prevention services for individuals
with HIV disease or those at risk of such disease. The
Managers believe that much greater effort is required to
ensure that the provision of HIV prevention and care services
becomes as seamless as possible, and that coordination be
pursued at the Federal level, in the States and local
communities to eliminate any administrative barriers to the
efficient provision of high quality services to individuals
with HIV disease.
A second plan for submission to Congress focuses on the
medical case management and provision of support services to
persons with HIV released from Federal or State prisons.
Administrative simplification: The Managers intend for the
Secretary of HHS to explore opportunities to reduce the
administrative requirements of Ryan CARE Act grantees through
simplifying and streamlining the administrative processes
required of grantees and providers under Titles I and II. In
consultation with grantees and service providers of both
parts, the Secretary is directed to (1) develop a plan for
coordinating the disbursement of appropriations for grants
under
[[Page S10034]]
Title I with the disbursement of appropriations for grants
under Title II, (2) explore the impact of biennial
application for Titles I and II on the efficiency of
administration and the administrative burden imposed on
grantees and providers under Titles I and II, and (3) develop
a plan for simplifying the application process for grants
under Titles I and II. It is the intent of the Managers to
improve the ability to grantees to comply with administrative
requirements while decreasing the amount of staff time and
resources spent on administrative requirements.
Program and service studies: The Managers request that the
Secretary, through the IOM, examine changing trends in the
HIV/AIDS epidemic and the financing and delivery of primary
care and support services for low-income, uninsured
individuals with HIV disease. The Secretary is directed to
make recommendation regarding the most effective use of
scarce Federal resources. The purpose of the study is to
examine key factors associated with the effective and
efficient financing and delivery of HIV services (including
the quality of services, health outcomes, and cost-
effectiveness). The Managers expect that the study would
include examination of CARE Act financing of services in
relation to existing public sector financing and private
health coverage; general demographics and comorbidities of
individuals with HIV disease; regional variations in the
financing and costs of HIV service delivery; the availability
and utility of health outcomes measures and data for
measuring quality of Ryan White funded service; and available
epidemiologic tools and data sets necessary for local and
national resource planning and allocation decisions,
including an assessment of implementation of HIV infection
reporting, as it impacts these factors.
The Managers also require an IOM study focuses on
determining the number of newborns with HIV, where the HIV
status of the mother is unknown; perinatal HIV transmission
reduction efforts in States; and barriers to routine HIV
testing of pregnant women and newborns when the mothers' HIV
status is unknown. The study is intended to provide States
with recommendations on improving perintal prevention
services and reducing the number of pediatric HIV/AIDS cases
resulting from perinatal transmission.
Development of Rapid HIV Test: The Managers encourage the
Secretary to expedite the availability of rapid HIV tests
which are safe, effective, reliable and affordable. The
Managers intend that the National Institutes of Health expand
research which may lead to such tests. The Managers also
intend that the Director of CDC should take primary
responsibility, in conjunction with the Commissioner of Food
and Drugs, for a report to Congress on the public health need
and recommendations for the expedited review of rapid HIV
tests. The Managers believe that the Food and Drug
Administration should account for the particular applications
and urgent need for rapid HIV tests, as articulated by public
health experts and the CDC, when determining the specific
requirements to which such tests will be held prior to
marketing.
Department of Veterans Affairs: The Managers note that the
U.S. Department of Veterans Affairs is the largest single
direct provider of HIV care and services in the country. Over
18,000 veterans received HIV care at VA facilities in 1999.
Veterans with HIV infection are eligible to participate in
Ryan White Title I and Title II programs when they meet
eligibility requirements set by EMAs and States, whose plans
for the delivery of services must account for the
availability of VA services. VA facilities are eligible
providers of HIV health and support services where
appropriate. The Managers expect that HRSA's Bureau of HIV/
AIDS shall encourage Ryan White grantees to develop
collaborations between providers and VA facilities to
optimize coordination and access to care to all persons with
HIV/AIDS.
International HIV/AIDS Initiatives: The Managers note that
the CARE Act provides a model of service delivery and Federal
partnership with States, cities and community-based
organizations which should prove valuable in global efforts
to combat the HIV/AIDS epidemic. The Managers strongly
encourage the Secretary, the Bureau of HIV/AIDS at HRSA, and
the CDC to provide technical assistance available to other
countries which has already proven invaluable in helping to
limit the suffering caused by HIV/AIDS. It is the Managers'
hope that the hard-earned knowledge and experience gained in
this country can benefit people with HIV/AIDS overseas.
Mr. KENNEDY. Mr. President, it is a privilege to support the CARE Act
Amendments of 2000. I commend the many Senators who worked hard and
well on the issue of HIV and AIDS. Senator Jeffords and Senator Hatch
have championed this issue since 1990 when the CARE Act was first
proposed, and Senator Frist has been an impressive leader in recent
years. Their leadership has and the leadership of many others has
raised our collective conscience about the HIV/AIDS crisis. Our goal in
this legislation is to ensure that citizens with HIV disease continue
to receive the benefits of advances in therapies and a system of
support that has achieved remarkable success in recent years.
For 20 years, America has struggled with the devastation caused by
HIV/AIDS. It is a virus that knows no color, religion, political
affiliation, or income status. AIDS continues to kill brothers and
sisters, children and parents, friends and loved ones--all in the prime
of their lives. This epidemic knows no geographic boundaries and has no
mercy on those it strikes. HIV/AIDS has become one of the greatest
public health challenges of our times. The CARE Act has directed needed
resources to accelerate research, develop effective therapies, and
support the 900,000 persons and families living with HIV/AIDS in
America, and it clearly deserves to be extended and expanded.
AIDS has claimed over 420,000 lives so far in the United States and
it continues to claim the most vulnerable among us, especially women,
youth, and minorities. We have good reason to be encouraged by medical
advances over the past ten years, but we still face an epidemic that
kills over 47,000 people each year. Like other epidemics before it,
AIDS is now hitting hardest in areas where knowledge about the disease
is scarce and poverty is high. The epidemic has dealt a particularly
severe blow on communities of color, which account for 73 percent of
all new infections. Women account for 30 percent of new infections.
Over half of new infections occur in persons under 25.
An estimated 34 percent of AIDS cases in the U.S. occur in rural
areas, and this percentage is growing. As the crisis continues year
after year, it becomes increasingly difficult for anyone to claim that
AIDS is someone else's problem. We all share in a very real way in
being touched by the epidemic.
Fortunately, we have been able to slow the progression of this
devastating disease. Many people living with HIV and AIDS are alive
today and leading longer and healthier lives. AIDS deaths declined by
20 percent between 1997 and 1998, thanks to advances in care and
effective new treatments. The smallest increase in new AIDS cases--11
percent--took place in 1999, compared with an 18 percent increase in
new cases just a year before. We are helping people earlier in their
disease progression and keeping them healthier longer.
Nevertheless, an estimated 30 percent of persons living with AIDS do
not have insurance coverage to pay for costly treatments. As a result,
heavy demands are placed on community-based organizations and state and
local governments. For these Americans, the CARE Act Amendments of 2000
will continue to provide the only means to obtain the care and
treatment they need.
In Massachusetts, there has been a 77 percent decline in AIDS and
HIV-related deaths since 1995. But the number of cases increased in
women by 11 percent from 1997 to 1998. Fifty-five percent of persons
living with AIDS in the state are persons of color. Massachusetts is
fortunate to have a state budget that provides funding for primary
care, prevention, and surveillance efforts. But no state is
economically sufficient enough to provide the significant financial
resources needed to enable all persons living with HIV disease to
obtain the medical and supportive services they need without the Ryan
White CARE Act.
The CARE Act will continue to bring hope to the over 600,000
individuals it serves each year in dealing with this devastating
disease. This reauthorization builds on past accomplishments, while
recognizing the challenge of ensuring access drug treatment for all who
need it, reducing health disparities in vulnerable populations, and
improve the distribution and quality of services.
Funds totaling $3.4 billion over the next five years will target the
hardest hit 51 metropolitan areas in the country under Title I of the
Act. Local planning and priority-setting under Title I assures that
each of the eligible metropolitan areas responds to local HIV/AIDS
needs. Safeguards are put in place to ensure that Title I areas are
protected from drastic shifts in funding that can destabilize their HIV
care infrastructure by limiting these losses to a maximum of 15 percent
over its FY 2000 levels without compounded the effects of the loss from
year to year. We also have assured EMAs the opportunity to reset the
clock each time they find they do not need hold harmless protection in
order to allow them
[[Page S10035]]
the needed time and resources to plan prioritize, and redirect
resources in response to major shifts that may occur in funding and in
the local epidemic.
Under Title II, $4.4 billion over the next five years will provide
emergency relief to assist states in developing their HIV health care
infrastructure. These funds will also provide life-sustaining drugs to
over 61,000 persons each month. In addition, these funds will provide
assistance for emerging communities that are increasingly affected by
HIV/AIDS, but do not currently qualify for additional assistance, while
assuring that base Title II funding losses do not occur in any fiscal
year for any state or territory.
Title III programs will receive $730 million during the five year
period to assist over 200 local health centers and other primary health
care providers in communities with a significant and disproportionate
need for HIV care. Many of these communities are located in the hardest
hit areas, serving low income communities. An additional $30 million in
funds under Title III will provide planning and capacity development
grants for hard-to-reach urban and rural communities.
In Title IV, $2700 million over the next five years will be used to
meet the specific needs of women, infants, youth, and families. An
additional $42 million will assure that oral health care is available
to persons with HIV/AIDS who are uninsured. One hundred and forty-one
million dollars in funding over the five-year period will assure that
we continue our investment in improving the skills of the healthcare
workforce.
In total, the CARE Act will authorize over $8.5 billion in funding to
fight HIVS/AIDS over the next five years.
I commend the dedication of the AIDS community and the Administration
in working with Congress over the past year to bring forward the best
possible legislation. I also commend Sean Donohue and William Fleming
of Senator Jeffords' staff, Dave Larsen of Senator Frist's staff, and
Stephanie Robinson and Idalia Sanchez of my staff for their effective
work on this landmark legislation.
The Senate's action today reaffirms our long-standing commitment to
provide greater help to those with HIV/AIDS and to families touched by
this devastating disease. America has the resources to win the battle
against AIDS. We must face this disease with the same courage
demonstrated by Ryan White, the young man with hemophilia who
contracted AIDS through blood transfusions, and for whom the original
act was named. Ryan White touched the world's heart through his valiant
effort to speak out against the ignorance and discrimination faced by
persons living with AIDS. This legislation carries on his brave work
and I urge the Senate to approve it.
Mr. FRIST. Mr. President, I am pleased to acknowledge the final
Senate passage of the Ryan White CARE Act Amendments of 2000 today,
which follows the actions of House of Representatives earlier this
morning. This important bill forms a unique partnership between
federal, local, and state governments; non-profit community
organizations, health care and supportive service providers. For the
last decade, this Act has successfully provided much needed assistance
in health care costs and support services for low-income, uninsured and
underinsured individuals with HIV/AIDS.
Through programs such as the AIDS Drug Assistance Program, ADAP,
which provides access to pharmaceuticals, the CARE Act has helped
extend and even save lives. Last year alone, nearly 100,000 people
living with HIV and AIDS received access to drug therapy because of the
CARE Act. Half the people served by the CARE Act have family incomes of
less than $10,000 annually, which is less than the $12,000 annual
average cost of new drug ``cocktails'' for treatment. The CARE Act is
critical in ensuring that the number of people living with AIDS
continues to increase, as effective new drug therapies are keeping HIV-
infected persons healthy longer and dramatically reducing the death
rate. Investments in enabling patients with HIV to live healthier and
more productive lives have helped to reduce overall health costs. For
example, the National Center for Health Statistics reported that the
nation has seen a 30 percent decline in HIV related hospitalizations,
producing nearly one million fewer HIV related hospital days and a
savings of more than $1 billion.
During the 104th Congress, I had the pleasure of working with Senator
Kassebaum on the Ryan White CARE Act Amendments of 1996 to ensure that
this needed law was extended. Senator Jeffords, who has done a terrific
job in crafting this bill, has already outlined some specifics of this
legislation, however, I would like to conclude by discussing a specific
provision which I am grateful Senator Jeffords included in this
reauthorization.
This bill contains a provision, under Title II of this Act,
addressing the fact that the face of this disease is changing as AIDS
moves into communities which have not been impacted as great as several
Title I grantees. One important aspect of this provision is the
creation of supplemental grants for emerging metropolitan communities,
which do not qualify for Title I funding but have reported between 500
and 2,000 AIDS cases in the last five years. For cities that have
between 1,000 and 2,000 AIDS cases this provision would provide cities,
including Memphis and Nashville, at least $5 million in new funding to
divide each year, or 25 percent of new monies under Title II, whichever
is greater. For cities with 500 to 999 AIDS cases in the last five
years, at least $5 million in new funding each year will be divided, or
25 percent of new monies under Title II, whichever is greater. This
provision will be implemented as soon as the appropriation level for
Title II, excluding the ADAP program, is increased by $20 million above
the FY2000 funding level. Once implemented, this program would remain
in place every year after the initial trigger level is met with at
least $10 million coming from the Title II funding to support this
needed effort.
Mr. President, I would like to thank Senator Jeffords for his
leadership on this issue, and Sean Donohue and William Fleming of his
staff for all their expertise in drafting this bill. I would also like
to thank Senator Kennedy and Stephanie Robinson of his staff for their
work and dedication to this issue. And finally I would like to think
Dave Larson and Mary Sumpter Johnson of my health staff for their work
on passage of this bill.