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Make a
Difference |
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CARE
Fund blends Research with Advocacy |
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www.MaryFisher.org |
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After learning she was HIV-positive in
1991, Mary Fisher spent much of the 1990s on
a high-profile campaign of AIDS activism. By
2000, she concluded that public advocacy
alone couldn't change enough American minds
and policies. To do that, she reasoned, "We
need to make a difference in research and
education."
So in spring 2000, she created the Mary
Fisher Clinical AIDS Research and Education
(CARE) Fund at the University of Alabama at
Birmingham (UAB). The Fund's founding
director was Dr. Michael Saag, a leading
AIDS physician and researcher. Its founding
principle was straightforward: "By blending
research with advocacy, we will press for a
greater difference in policy, in treatment
and in care." |
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Dr. Saag's
pursuit of that
principle has led
him in recent years
from the offices of
the U.S. Capitol to
the airwaves of NPR,
from the National
Institutes of Health
(NIH) to The New
York Times.
In 2006, as Congress
debated
reauthorizing the
Ryan White CARE Act
that funds HIV/AIDS
patient care, Dr.
Saag visited key
House and Senate
players in the
debate. He shared a
his recent study of
HIV/AIDS care costs
and its encouraging
key finding: That
the expensive drug
regimen known as
highly active
antiretroviral
therapy (HAART) was
actually
cost-effective,
because it kept
HIV/AIDS patients
healthier and their
overall health care
costs dramatically
lower.
But Dr. Saag told
policymakers the
study also
documented "a
potential crisis":
Physicians and
clinics treating
HIV/AIDS patients
consistently are
reimbursed for far
less than they spend
on care. Private
clinics that can't
cover such
shortfalls are
closing their doors;
institutions such as
UAB are so far
shouldering the
costs, hundreds of
thousands of dollars
annually. If the
situation persists,
Dr. Saag believes,
it will leave
patients without
access to care and
will drive doctors
away from practicing
AIDS medicine.
As he seeks policy
solutions for the
challenges in his
clinical work, Dr.
Saag draws praise
and support for his
research work. In
late 2006, NIH made
a $2.45 million
grant to a project
Dr. Saag heads:
creation of an
electronic network
to pool treatment
data from 15,000
patients at seven
AIDS research
centers nationwide.
To decide the best
treatment for
patients with HIV,
doctors previously
relied on clinical
trials conducted on
relatively few
patients for a
relatively short
time. The new data
system will provide
essentially
clinical-trial-quality
data on every
patient in care,
compiled long-term
and available in
real time, says Dr.
Saag. And computers
will be able to use
the system's data to
calculate which
treatments have the
greatest likelihood
of success, based on
what worked for
other patients.
The New York Times
predicted the data
network "could be a
valuable resource to
researchers." Dr.
Saag calls it "a new
paradigm for
clinical
investigation — the
first formal way to
track HIV/AIDS
treatments and
outcomes on a broad,
comprehensive scale
in realtime." He
also says he hopes
it serves as a model
to create similar
data networks for
treating other
diseases. |
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Excerpted from The
Mary Fisher CARE
Fund newsletter,
December 2006. |
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Michael
Saag,
MD, has
built
his
professional
life on
the
premise
that
medical
science,
clinical
care and
public
policy
can -
and
should -
enrich
each
other.
While
still in
medical
training,
he
conceived
the plan
for an
HIV
outpatient
clinic
that
would do
scientific
research
as well
as
patient
care. He
founded
such a
facility
at UAB
in 1988
and
remains
its
director,
as well
as
director
of UAB's
Center
for AIDS
Research.
Dr. Saag
is on
the NIH
Office
of AIDS
Research
Council,
the
Board of
Directors
of the
Infectious
Disease
Society
of
America,
and the
International
AIDS
Society
USA. He
has
published
more
than 200
peer-reviewed
journal
articles,
has
contributed
more
than 50
chapters
to
medical
textbooks,
and is
senior
editor
of the
journal
AIDS
Research
and
Human
Retroviruses. |
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