|
Washington –
Senators
Tim
Scott
(R-SC)
and
Cory
Booker
(D-NJ)
have
introduced
a
new
initiative
in
the
fight
against
Sickle
Cell
Disease
(SCD)
–
the
Sickle
Cell
Disease
Research,
Surveillance,
Prevention
and
Treatment
Act.
There
is
currently
no
national
framework
in
place
to
accurately
measure
the
current
number
of
Americans
affected
by
SCD,
and
this
new
bipartisan
legislation
would increase
efforts
to
collect
data on
the
disease
and
reauthorize
the
Sickle
Cell
Disease
Treatment
Demonstration
Program
(SDTDP)
for
four
years.
“It
is
critical
that
we
understand
the
full
breadth
of
what
we’re
facing
in
the
fight
to
cure
Sickle
Cell
Disease,”
Senator
Scott
said.
“This
legislation
marks
a
significant
step
forward
in
our
efforts
to
combat
Sickle
Cell
on
all
fronts
–
research,
surveillance,
prevention
and
treatment.
We
owe
it
to
those
suffering
every
day
to
do
everything
possible
to
find
a
cure.
I
want
to
thank
Senator
Booker
for
helping
introduce
this
important
legislation,
and
I
look
forward
to
gaining
even
more
support
from
our
colleagues
in
the
Senate.”
“Sickle
cell
disease
is
a
stark
example
of
the
disparate
health
services
available
to
African-Americans
compared
to
their
white
peers,
with
devastating
effect,”
Booker
said.
“Despite
being
one
of
the
most
common
genetic
and
blood
diseases,
and
the
fact
that
we
have
known
about
it
for
more
than
100
years,
Americans
with
sickle
cell
disease
continue
to
face
a
variety
of
barriers
when
trying
to
access
care.
Compare
that
to
other
diseases
that
impact
a
similar
or
even
smaller
number
of
people,
which
receive
more
attention,
and
at
times,
more
resources
to
help
patients.”
“It’s
long
past
time
we
start
treating
sickle
cell
disease
as
the
serious
and
debilitating
illness
it
is
and
allocate
the
necessary
resources
to
monitor,
research,
and
treat
it,”
Booker
added.
While
the
CDC
estimates
that
100,000
Americans
suffer
from
SCD,
the
exact
figure
is
unknown due
to
limited
efforts
to
collect
data
on
the
disease. This
legislation
creates
the
National
Sickle
Cell
Disease
Research,
Surveillance,
Prevention,
and
Treatment
program
to
allow
HHS
to
issue
grants to
no
more
than
20
eligible
entities
(defined
as
states,
state
health
or
public
health
departments,
and
institutions
of
higher
education)
for
the
purposes
of:
- Collecting
data
on
the
demographics
and
prevalence
of
sickle
cell
disease;
- Conducting
public
health
initiatives
with
respect
to
the
disease;
and
- Identifying
and
evaluating
strategies
for
SCD
prevention
and
treatment.
The
bill
also
reauthorizes
the
SDTDP
for
four
years
and
a
total
of
$18
million
dollars,
which
includes
expanding
support
services
for
adolescents
making
the
transition
to
adult
care.
### |