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"AIDS
has taken too many friends and relatives and loved ones from everyone
of us in this room. It has shaken the faith of many, but it has inspired
a remarkable community spirit."
President
Clinton, May 20, 1996
Signing of the Ryan White
CARE Act Reauthorization
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Record
of Accomplishment
Since
the epidemic of HIV and AIDS began in 1981, more than 500,000 Americans have
been diagnosed with AIDS and required care. As the number of Americans living
with AIDS increased, the demands on the U.S. health care system increased dramatically,
but Federal, State, and local governments along with community-based organizations
and private clinicians have responded with compassionate, high-quality medical
care. In 1986, Federal expenditures for HIV-related care and services were $193
million, by 1996 the Federal share reached $3.8 billion.
In
the early years of the epidemic, the health care infrastructure was particularly
unprepared to accommodate the health care needs of persons with HIV. To meet
their complex health care needs, HIV-positive persons were often forced to negotiate
a fragmented system of care. There were few programs designed to meet the unique
care needs of HIV-positive individuals. Moreover, available care services were
often directed towards meeting the acute care needs of persons diagnosed with
AIDS, rather than intervening in the early stages of HIV disease. While we still
have far to go, the quality and availability of services for HIV-positive persons
have improved significantly.
People
living with HIV now access and finance health care services in a variety of
ways. Currently, approximately 50 percent of adult Americans and 90 percent
of children living with AIDS receive their medical coverage through the Medicaid
program and another 5 percent receive Medicare
benefits. An estimated 15 percent of people living with AIDS have private health
insurance and the remaining 30 percent are uninsured and must rely on personal
payment or charity care.[7]
Enactment
of the Health Insurance Portability and Accountability Act of 1996 provides
important new protections for people living with chronic conditions including
HIV/AIDS. It guarantees that individuals with insurance can take that coverage
from job to job without being excluded because of a pre-existing medical condition.
It eliminates the discriminatory tax treatment of health insurance for the self-employed
and it requires insurance companies to sell coverage to any employer who seeks
it without regard to the health status of any workers.
In
addition to Medicaid, the centerpiece of the national safety net for HIV-positive
people is the Ryan White Comprehensive AIDS Resources Emergency (CARE)
Act of 1990, administered by the Health Resources and Services Administration
(HRSA).
The CARE Act programs were established to fill gaps in coverage and build systems
of care to create access to health care for people living with HIV and AIDS.
The various titles of the CARE Act support direct services for people living
with HIV:
-
Titles
I and II of the CARE Act provide funds for
outpatient care, support services, insurance continuations, community-based
care, and case management that are given to cities and States primarily
on a formula basis. Title II also provides drug reimbursement funding for
persons living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP).
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Title IIIb of the CARE Act provides early intervention services such as
counseling and testing, medical care, and educational services for medically
underserved persons with the goal of reducing HIV-related illness.
-
Title IV seeks to increase the availability of research and care and services
for women, infants, children, and youth in a community-based, family-centered
system of care.
-
Title V provides reimbursement for dental care for low-income persons living
with HIV and AIDS, funds Special Programs of National Significance (SPNS),
and supports AIDS Education and Training Centers which provide up-to-date
HIV-related training for health care professionals.
HRSA
also provides primary care to persons living with HIV through its Community
Health Centers and Maternal and Child Health Block Grant programs. Other sources
of primary care supported by the Federal government include the Department
of Defense, the Department of Veterans Affairs,
and the Indian Health Service (IHS),
which provides health care for HIV-positive Native Americans and Alaska Natives.
Additionally, the Bureau of Prisons
within the Department of Justice
provides care for HIV-positive people in Federal prisons.
People
living with HIV and their families face significant obstacles in locating affordable
housing. Housing assistance for people living with HIV and AIDS is provided
by the Department of Housing and Urban Development (HUD)
through Housing Opportunities for Persons with AIDS (HOPWA),
enacted in 1990, and other programs, such as the Section 811 Supportive Housing
Programs for Persons with Disabilities, the McKinney Homelessness Assistance
Grants, and the Section 8 Rental Assistance Program. These programs work in
partnership with local initiatives incorporating housing assistance into a community's
continuum of services.
To
further foster community involvement, HUD also has established the Consolidated
Planning process for communities that receive funds under the Department's economic
and community development programs, including recipients of HOPWA formula allocations.
The Community Development Block Grant (CDBG), the HOME affordable housing program,
as well as public housing programs are key resources that are available to communities.
Since
he took office in 1993, President Clinton has built on this record by making
AIDS a top priority and increasing the national commitment by:
- Winning
the fight to preserve the Medicaid guarantee of coverage for the more than
50 percent of people with AIDS and 90 percent of children with AIDS who
rely on this program for their health coverage;
- Increasing
funding for the Ryan White CARE Act by 158
percent and signing the Ryan White CARE Act Amendments of 1996, extending
this program until 2001;
- Increasing
funding for HOPWA by 96 percent;
- Tripling
specific Federal funding for State AIDS Drug Assistance Programs, which
help uninsured and underinsured individuals purchase prescription drugs;
and
- Revising
eligibility rules for Social Security disability
benefits to make it easier for people living with HIV to qualify for
benefits.
Future Opportunities for Progress
The
national goal in this area is to ensure that people living with HIV have the
opportunity to live productive lives by having access to services that are affordable,
of high quality, and responsive to their needs. AIDS care and service programs
must continue to provide access to care for those without insurance coverage,
improve prioritization and accountability, and increase the cost-effectiveness
of services they provide. As treatments improve and extend the productive lives
of people with HIV, we must continually reexamine the range of services that
are needed.
Two
major challenges exist in meeting this goal:
-
Maintaining
HIV-related care and services as a priority to ensure access to promising
new treatments for low income individuals; and
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Assuring
that available resources are used as effectively as possible.
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Making
an Investment in Care and Services a Priority
Preserving
Medicaid and Medicare
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As the
epidemic continues to spread in lower-income communities, Medicaid will
be an even more essential lifeline of support for Americans living with
HIV and AIDS. Many people are impoverished by the costs of medical care
for HIV disease. The need to maintain the historic Federal-State partnership
on Medicaid
has never been greater.
Proposals
in Congress to convert Medicaid into a block grant would endanger access
to care for people living with HIV and AIDS, particularly proposals to
eliminate or weaken the Federal guarantee of coverage for people living
with disabilities. The President has vetoed one such proposal and has
made sustaining the entitlement to Medicaid central to the national goal
of ensuring appropriate and affordable care and services for persons living
with HIV and AIDS.
Medicare
is also becoming an increasingly important source of health care coverage
for people living with HIV/AIDS. Individuals who receive Social Security
Disability Insurance (SSDI) benefits for 29 months, including a 5 month
waiting period, are eligible to receive Medicare benefits. As the life
expectancy of people living with AIDS has increased, a greater number
of those individuals have begun to qualify for Medicare.
While this
provides an important additional source of benefits, there are limitations
on benefits -- in particular, the absence of prescription drug coverage
-- that may be problematic for persons living with AIDS. Supplementary
medical coverage, known as Medigap insurance, is often difficult for a
person living with AIDS to obtain. The Administration is exploring options
to make Medigap policies more accessible.
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| Assessing
Social Security Administration Programs |
With the
improved quality of life realized by many people due to the advent of
protease inhibitors and combination therapy, it is important to assess
programs such as Supplemental Security Income and Social Security Disability
Insurance regarding their flexibility in meeting the needs of individuals
as they seek to move off and on to disability.
The current
system of disability programs, which assures continued access to health
insurance, often places obstacles in the way of individuals who want to
return to work. The Administration is exploring mechanisms to ensure that
Federal programs support people with disabilities who want to work or
return to work.
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Continuing
Support for the Ryan White CARE Act |
The five-year
reauthorization of the CARE Act signed by President Clinton on May 20,
1996 provides people living with HIV and AIDS with peace of mind that
support from the Federal government will continue. These grants received
$996 million in FY 1997.
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Supporting
Housing
Services |
Finally,
maintaining consistent funding for the housing component of the services
safety net will continue to be a national priority. Without stable housing
a person living with HIV has diminished access to care and services and
a diminished opportunity to live a productive life. It is estimated that
up to 50 percent of people living with HIV and AIDS are or will be at
risk of becoming homeless during the course of their illness.[8]
The President's FY 1997 amended budget request of $196 million for HOPWA
was enacted.
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| Assuring
Effective Use of Limited Resources |
The three
primary ways the Federal government will work to make the most of its
limited resources are by: (1) improving coordination among Federal programs,
(2) improving the quality of care provided by those programs, and (3)
evaluating program effectiveness to ensure that funds are well spent.
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| Improving
Program Coordination |
Integrating
HIV-related services is an important step in assisting communities to
build seamless systems of support for the most vulnerable persons in our
communities. Organizations receiving Federal funding to provide AIDS-related
care often require support from several Federal agencies. For example,
creating a comprehensive community-based program that integrates primary
care, substance abuse treatment and prevention, sexually transmitted disease
screening, TB prevention and treatment, HIV prevention, access to clinical
trials, and housing assistance requires separate applications to SAMHSA,
HRSA,
CDC, NIH, and HUD.
The Agencies
funding HIV-related services are committed to simplifying and improving
the application process for Federal funding and to facilitating service
integration. HRSA and SAMHSA have issued joint program announcements,
and HUD and HRSA have issued a joint program announcement for the Special
Projects of National Significance (SPNS)
program. These concerted efforts to improve integration will be continued
and expanded, with special attention to linking HIV and substance abuse
prevention and services.
Improving
collaborative efforts with the private sector is yet another opportunity
for strengthening the effectiveness of current public-private partnerships
and developing new ones. Combining resources and innovation makes more
efficient use of scarce public and private resources. We must work to
strengthen existing partnerships and seek innovative approaches for developing
new collaborations.
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Improving
Quality of Care |
Federally-supported
efforts such as Medicaid,
Medicare, Ryan
White CARE Act programs and the health care delivery systems at the
Department of Veterans Affairs (VA) and
the Department of Defense (DOD)
can and should consistently provide high-quality care. Ensuring consistency
in care delivery requires increased training for health care professionals
and greater accountability through the use of performance measures for
quality care. It may also require enhanced technical assistance to CARE
Act grantees, planning councils, and consortia.
Having
access to quality care within the context of managed care is an important
emerging issue for all Americans including those living with HIV. The
President has established the Advisory Commission on Consumer Protection
and Quality in the Health Care Industry to examine changes in the industry
and make recommendations.
It is also
essential that practical information on research advances for practicing
clinicians and their patients be provided in a timely manner. (See Section
on Translation of Research Advances into Practice.) HRSA
and HCFA will continue
to offer guidance to grantees and the States in regards to maintaining
the quality and standard of care appropriate for people living with HIV.
To this end, during FY 1997, the Office of HIV/AIDS Policy at HHS is undertaking
a program to develop clinical practice guidelines in conjunction with
other government Agencies such as the NIH,
VA, and DOD
and private-sector clinicians.
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| Evaluating
Program Effectiveness |
Strong
Federal support for safety net programs must be accompanied by improved
accountability and priority setting. Evaluating current activities provides
valuable information for planners and those on the front lines of the
epidemic and assists in providing better care to people living with HIV.
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