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Ryan White:
The Young Man Behind the Name
Over the years,
the name ‘Ryan White’ has become synonymous with
the federal legislation that funds HIV/AIDS care
services in the United States. However, Ryan
White was actually Ryan Wayne White, a young boy
growing up in Kikomo, Indiana in the 1970s. Ryan
was a hemophiliac and in 1984 at the age of 13
his doctors learned that he had contracted HIV
through a transfusion of infected blood. At that
time, he was given six months to live. Young
Ryan decided to do his best to continue to live
his life just as he had before he learned of his
diagnosis. Unfortunately, lack of knowledge of
AIDS at the time, made this difficult. Officials
at his school tried to keep him from attending
classes in an effort to protect the other
students from contracting the disease.
Eventually, the situation became intolerable and
Ryan and his family moved to the more welcoming
community of Cicero, Indiana. School directors
at Hamilton Heights High School provided
workshops for students in order to educate them
about AIDS. Material was also sent home for the
parents to read. This went a long way toward
easing tension, and also paved the way for Ryan
to achieve the goal of continuing to live his
life as normally as possible.
While Ryan worked
at making new friends, his family was turning an
incurable disease into a high profile story
about the reality of AIDS in America. Their
one-family crusade provided a very poignant look
at the personal side of the AIDS epidemic. “The
Ryan White Story” aired on ABC-TV and Ryan made
appearances on national television talk shows,
all the while living with the knowledge that he
did not have long to live.
Ryan White died on
April 8, 1990, at the age of 18. Just a few
months after his death, Congress passed the Ryan
White CARE Act. The particular aim of this act
was to provide systems of care for people living
with HIV/AIDS who did not have adequate health
insurance or other resources.
Ryan White’s
struggles, both physically and socially, changed
people’s attitudes and created a more
knowledgeable nation concerning AIDS. Due to the
White Family and Ryan’s brave struggle, the
nation has become more understanding and
compassionate about the plight of those living
with the disease.
The Ryan White
CARE Act
Congress first enacted the Ryan White
Comprehensive AIDS Relief Emergency (CARE) Act
in 1990. The CARE Act is the single largest
source of federal funding earmarked specifically
for people living with or affected by HIV/AIDS.
The CARE Act supports a wide-range of HIV care
and medical support services from HIV testing
and counseling to ambulatory outpatient medical
care to life-saving anti-retroviral HIV
medications. Services are provided through
several funding mechanisms, including grants to
cities and states, direct grants to health care
providers, and targeted funds to support HIV
prescription drugs, dental services and other
activities. In 2004, Congress appropriated more
than $2 billion dollars to the U.S. Department
of Health and Human Services, Human Resources
and Services Administration (HRSA) for
distribution to CARE Act programs. Last year,
Ryan White CARE Act-funded programs served more
than half a million individuals in all 50
states, the District of Columbia, Puerto Rico,
and throughout the U.S. territories.
Congress must
reauthorize the CARE Act every five years,
utilizing a process whereby they review and
amend the law. The last reauthorization took
place in 2000. In light of this, the next
reauthorization was scheduled to take place by
September 30, 2005, but fierce legislative
negotiations in how billions in CARE Act dollars
will be distributed among states and
territories, urban centers, early intervention
clinics and 57 AIDS drug assistance programs has
stalled the process. When the new process for
distributing funds among states will be
announced remains unknown.
But what exactly
is the Ryan White CARE Act? The Ryan White CARE
Act contains four major categories referred to
as titles. The following is a brief description
of the Titles under the act.
Title I
Title I of the Ryan White CARE Act provides
grants to 51 Eligible Metropolitan Areas (EMAs)
in the United States, including Puerto Rico. It
provides emergency assistance to eligible
metropolitan areas disproportionately affected
by the HIV epidemic. Funds are distributed
through Planning Councils comprised of community
members, thirty-three percent of which must be
people living with HIV who receive Title I
services, but are not employees or
representatives of Title I-funded grantees.
Through funding allocations, prescription drugs,
mental health and substance abuse services, home
hospice care, transitional housing, emergency
transportation, nutritional services, and case
management to area residents living with
HIV/AIDS. The amount of funding an EMA receives
is based on a ten-year weighted AIDS case count.
Title II
Title II of the Ryan White CARE Act provides
grants to all 50 states, the District of
Columbia, and all U.S. territories and is
distributed based on a formula that estimates
the number of people with AIDS in each state and
the estimated number of people living with AIDS
outside the state’s EMA. Title II supports
outpatient medical, dental, developmental and
rehabilitative services, home and community
based services, continuation of health insurance
coverage, prescription drugs, a community
planning component, and supportive services.
Title II also includes the AIDS Drug Assistance
Program (ADAP), which supports the provision of
HIV medications and related services in all 50
states. About 136,000 HIV-positive people who
are uninsured or underinsured receive services
from ADAP yearly. Title II funds are distributed
based on a formula that estimates the number of
people with AIDS in each state and the estimated
number of people living with AIDS outside the
State’s EMA. West Texas receives Title II funds
that are funneled through the Texas Department
of State Health Services to the Administrative
Agency, Planned Parenthood Center of El Paso.
Title III
Title III of the Ryan White CARE Act provides
funds to HRSA to provide competitive grants to
support medical treatment and medical support
services for people living with HIV/AIDS
including HIV testing, early intervention, risk
reduction counseling, case management, outreach,
oral health, nutrition, and mental health
services. Title III providers include community
and migrant health centers, city or county
health departments, health care for homeless
centers and community-based organizations that
offer primary health care services to more than
150,000 people. West Texas receives Title III
funds that are sent directly to the community by
HRSA. The current Title III providers in the
West Texas HIV Service Delivery Area are La Fe
CARE Center and Planned Parenthood Center of El
Paso.
Title IV
Title IV of the Ryan White CARE Act serves
women, youth, children and families though the
provision of comprehensive health care services,
including primary medical services, case
management and related social services, and
access to research. Title IV grants are
administered in three-year cycles. Currently,
West Texas does not receive Title IV funding.
Part F
Part F of the Ryan White CARE Act includes the
HIV/AIDS Dental Reimbursement Program that
provides funding for oral health care services
to people living with HIV. Part F also funds the
AIDS Education and Training Centers (AETCs), a
network of 14 regional centers that educate
health care providers about the prevention and
treatment of HIV. AETCs provide ongoing provider
education and information through an established
network of trained providers who are HIV expert
resources in their local communities and the
Special Projects of National Significance (SPNS)
program which supports innovative HIV service
delivery models to provide health and social
services to historically underserved populations
and communities of color. The designated AETC
for Texas is the Texas/Oklahoma AETC at Parkland
Health and Hospital System. The designated local
performance site of the Texas/Oklahoma AETC in
West Texas is La Fe CARE Center.
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