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Congressional Testimony
March 02, 2000
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 4280 words
HEADLINE:
TESTIMONY March 02, 2000 JEANNE WHITE SENATE HEALTH, EDUCATION,
LABOR & PENSIONS AIDS FUNDING
BODY:
AIDS ACTION
Testimony of Jeanne White Before the Senate Committee on Health, Education,
Labor, and Pensions March 2, 2000 Thank you Chairman Jeffords, Senator Kennedy
and members of the committee for the opportunity to talk with all of you today.
My name is Jeanne White, and I am the mother of two children, my daughter Andrea
and my late son Ryan, after whom the Ryan White CARE Act is
named. I come here today as a spokesperson for AIDS Action, the national voice
on AIDS, and as a parent. I come here as a mother, just a mom from Cicero,
Indiana, deep in America's heartland, who has witnessed first-hand the ravages
of this disease and the fear and pain it has levied against individuals and
communities. On behalf of men, women, children and families living with HIV/AIDS
from East and West, North and South, I ask you to reauthorize the Ryan
White CARE Act. I remember walking the halls of Congress during the
passage of the CARE Act. Back then, I never would have imagined that this
legislation would help so many people like my son, giving them the strength to
live another day. I also never would have imagined how the need for this
invaluable program would grow. That is why we must reauthorize the CARE Act. We
must "go for it", as Ryan would often say to me as he and I were fighting our
battle against HIV. In August 1990, just four months after Ryan's death, the
United States Congress passed the CARE Act to provide care and treatment for the
thousands of Americans living with HIV disease. While this legislation could
never replace my Ryan or the emptiness I still feel today from that loss, I am
happy that a program named after my son has benefited hundreds of thousands of
men, women and children living with HIV disease. Since its enactment in 1990 and
its reauthorization in 1996, the CARE Act has helped deliver medical and social
services that give many people something they never had before in the course of
HIV disease: access to comprehensive and compassionate care. The CARE Act is
largely responsible for people with HIV/AIDS living longer, more productive
lives and has given communities all over this country the ability to design care
and treatment services tailored to their own needs. The Act has cast a wide
safety net that helps people with HIV disease live life to the fullest. Best of
all, the Ryan White care system and the programs that enrich it continue to
teach us all about what works in the care and treatment of our nation's most
vulnerable citizens. It is truly a model of care that can be adapted to meet the
needs of the hundreds of thousands of individuals living with other serious and
life-threatening diseases. Members of the committee, the CARE Act is as strong
as my son Ryan was. That's good, because we need the CARE Act now more than
ever. We've come a long way since Ryan's death, but we still have so far to go.
More people than ever are living with HIV disease and need the care and support
the CARE Act provides. Thankfully, in recent years the development of new
therapies has resulted in a dramatic reduction of the AIDS death rate. If Ryan
had lived just a few more years he, too, might have benefited from these same
treatments. But with these new hope-giving and life-extending therapies has come
an added pressure on the hundreds of health service providers who care for
individuals living with HIV disease, who have experienced a 30 to 40% increase
in the number of new patients. The remarkable fact that people with AIDS are
living longer has contributed to an increased demand on the HIV/AIDS care safety
net. This intricate, vital care system, built to ensure comprehensive health
care and services for people with AIDS who had nowhere else to turn, is
struggling to keep pace with new and ongoing demands. The challenge of serving
every individual with HIV disease who has nowhere else to turn is
understandable. Given the success of the new treatments when coupled with the
critical support services that make success a reality, the CARE Act brings us
closer to the goal of ensuring a standard of care set out by the Public Health
Service treatment guidelines for HIV and opportunistic infections. This is a
call for early and aggressive treatment. The number of individuals in need of
the CARE Act bears out the urgency for swift reauthorization. In 1990, when the
CARE Act was passed, there were 155,619 AIDS cases. In 1996, during its
reauthorization there were 481, 234 cases. And, in 1999, at the turn of the
century, America has recorded 781,344 cases of AIDS. Mr. Chairman and members of
the committee, ever since Ryan's death, I have dedicated myself to traveling the
country and continuing the work of AIDS awareness that Ryan began. What I have
seen is that the face of AIDS is changing. For example, in 1998, tens of
thousands of people received primary care and support services under the CARE
Act. Sixty percent of those were people of color. Indeed, AIDS is the leading
cause of death among African Americans between the ages of 25-44 and the second
leading cause of death among Latinos in the same age group. People of color make
up 55% of all reported AIDS cases, 82% of all children with AIDS, 50% of all
cases reported among men, and 77% of all cases among women. Indeed, more women
than ever in the U.S. have AIDS, and the rate is increasing. In just over 10
years, the proportion of all AIDS cases reported among adult and adolescent
women more than tripled, from 7% in 1985 to 23% in 1998, according to the
Centers for Disease Control and Prevention. I want to pay particular attention
to the threat that HIV poses to the future of our young people, the very same
young people who staff your offices and help you to write and pass legislation.
In much the same way that the young people on your staffs make Capitol Hill run.
Ryan was my very own mover and shaker, serving as a trailblazing national voice
on HIV issues. speaking for his generation. Ryan's generation listened to him. A
1997 Wall Street Journal survey found that young Americans - people aged 18 to
29 - identify AIDS as the defining event for their generation. Yet sadly, a
majority of young people believe that AIDS is over. As a mother dedicated to
seeing that no more of our sons or daughters are lost to HIV, I find it
heartbreaking to think that there are 40,000 new infections every year in the
U.S. - half of which are among young people, as reported by the CDC. As I study
these facts and talk to people from coast to coast, it is clear that AIDS is not
over. I don't know what people would do without the CARE Act. Individuals and
families need the CARE Act, and providers need it to continue treating people
affected by HIV disease. Each thread in the CARE Act's safety net is inter-woven
in such a way so that the specific needs of individuals living with HIV disease
are met. The Ryan White CARE Act is there to ensure that our
nation can continue to meet service needs and successfully support access to
life saving therapies. The CARE Act is based on the recognition that medications
alone are not enough to successfully fight AIDS. The structure of the CARE Act
has worked effectively to: dramatically improve the quality of life for people
living with HIV disease and their families; reduce the use of costly inpatient
care; and increase access to care for underserved populations, including people
of color. This coordinated and comprehensive approach makes the CARE Act a
cost-effective and efficient investment -- one that must be continued. I'm
pleased that Congress wisely recognized that the nation needed a great leap of
scale in order to care for individuals living with HIV/AIDS and put in place
this efficient statute. The CARE Act continues to show that its strength is deep
and its success is wide. From the very beginning, the framers of the Act agreed
that for the legislation to adjust to HIV, its structure had to be as resilient
as the virus itself. To fortify its structure, the Act has at its core four
pillars of strength. First, the Act gives cities and states autonomy to decide
how best to care for their citizens. Thanks to local decision-making, public
health officials, community-based organizations, and individuals living with
HIV/AIDS have been allowed to come together to tailor the delivery of services
to best meet their needs. Local control has resulted in cooperative efforts from
various levels of government to develop dynamic and effective strategies in
response to the AIDS epidemic. Second, individuals who receive care through the
CARE Act car. access a comprehensive range of services designed to maximize the
availability and effectiveness of life-saving therapies. The spectrum of medical
and supportive services included in the CARE Act is vital to providing better
access to quality care. Third, the CARE Act is a foundation for fostering better
collaboration between local, state, and federal agencies in order to improve
access to care for people living with HIV. Fourth, the CARE Act's flexibility
has provided incentives to develop innovative approaches to treating HIV disease
while improving access to care. Thanks to the enduring foundation of the CARE
Act, providers in every state of the nation, and in every community, are
providing care and treatment and recording success. Your constituents are
weaving the threads that make up the HIV/AIDS safety net. This foundation has
been tested. Time and time again, it's been proven strong. However, on the tenth
anniversary of the CARE Act, we must prepare for a new century. I believe that
we can build upon the greatness of the Ryan White CARE Act. We
must look forward, modernize the Act and ensure that it can meet the demands and
challenges facing the HIV/AIDS communities. One of my greatest challenges was to
make sure that Ryan was allowed to attend school and get his education. During
that battle, I learned a few lessons about the importance of tolerance, the
power of information and the value of persistence. In the 10 years since the
CARE Act was passed, we've learned important lessons about how best to care for
people with HIV disease. Well, practice makes perfect; the Act can only get
better through our well-informed improvements. One important lesson we've
learned in treating individuals with HIV disease is that no two people or two
communities are the same. This means that the CARE Act must continue to respond
to these differences. First for example, we should make sure that smaller
communities experiencing the impact of the HIV epidemic also have the necessary
resources for care and treatment. This includes the ability to make sound
decisions through local control and greater equity in funding distributions. The
experts - service organizations, community-based organizations and individuals
infected and affected by the disease must be involved in defining what the needs
are and how best to meet them, always with accountability built in. Equally
important, we must recognize that just because HIV has touched an ever-growing
number of lives in smaller communities, this does not in any way lessen the
force with which HIV continues to strike our largest cities. That's why as we
prepare the Act of the 21st century, any changes we make to the Act must not
compromise existing infrastructures and/or service delivery systems in
metropolitan areas. Second, much in the same way that HIV has become a part of
communities large and small in every region of the country, it has become a part
of every culture and population in our nation. HIV is a mirror for our nation's
diversity. We must do all that we can to ensure that these populations receive
appropriate care with all due speed. We've come a long way since the beginning
of the epidemic in terms of what we know about HIV and how to treat it. And,
yet, some of the misunderstanding and discrimination that Ryan fought so hard
against still persists today. That is why access to care and services for
underserved communities must remain a priority across all titles at the same
time that we continue to plan for emerging needs. Towards this end, incentives
and technical assistance should be extended to ensure that CARE Act programs are
ready to meet the needs of targeted populations. Third, just as we must provide
incentives to community-based health providers to treat underserved populations,
we must do more to encourage localities to contribute more funding to HIV care
and treatment. At the point when science is bringing us the hope of new and
vastly improved treatment options, it is unacceptable that there are individuals
in need of HIV-related medications, despite the presence of the AIDS Drug
Assistance Program. We must reward states and cities that invest resources in
response to the needs of their communities and stimulate greater participation
from more reluctant local and state governments. Fourth, the CARE Act has also
taught us that the continuum of care under the statute includes dental care and
training of both dental residents and medical professionals in the treatment of
individuals with HIV. Now, we must build upon the success of the Dental
Reimbursement Program and expand it to allow programs in non-university settings
the opportunity to participate, and we should prioritize funding to those
programs with strong linkages to community-based programs. Fifth, as the CARE
Act enters its second decade, we must find better ways of documenting the
quality care it provides and use this information to fine tune its programs.
Currently the HIV/AIDS Bureau (HAB) at the Health Resources and Services
Administration (HRSA) is doing just that. The HAB needs the resources to
generate needed data collection and dissemination, analysis and evaluation so
that we can pinpoint the most effective use of CARE Act funding. We should
enhance the accountability built into the Act, so that better planning for
resource distribution can be done. If the United States is to continue to meet
the challenges presented by this complex epidemic, it is essential that we
support innovative and flexible solutions to solve our nation's AIDS epidemic.
As the epidemic continues to grow and expand into more disenfranchised
communities, the need for CARE Act services has become even more critical to the
health and well being of individuals who have to deal with multiple barriers to
accessing health care. The Ryan White CARE Act, itself, was
created in this spirit. This important piece of legislation is scheduled to
expire on September 3 0, 2000. It is an essential component in our nation's
fight against HIV and AIDS and must be reauthorized. I am grateful for Congress'
continued bipartisan Support of the Ryan White CARE Act over
the past decade. The result of these efforts is that thousands of people living
with HIV/AIDS have been able to lead productive lives because of the care,
treatment and services provided by the CARE Act. Throughout the United States,
the CARE Act continues to make a tremendous difference in the lives of people
living with HIV disease. The success of this legislation is a lasting tribute to
my son, and it comforts me to know that so many people are being helped through
the services and treatments provided in Ryan's name. I am thankful to have
shared 18 precious years with my son and I am thankful that Ryan's legacy lives
on through the CARE Act. In 2000, we must reauthorize the Ryan White
CARE Act to help those living with HIV/AIDS. It is what Ryan would want
us to do. Mr. Chairman and members of the committee, thank you once again for
the opportunity to testify today and I welcome any questions that you might
have.
LOAD-DATE: March 7, 2000
