June 15, 2016 The Skanner Page 9
News
By Joan H. Allen
NNPA News Wire
Contributor
J
une 19, 2016 marks
World Sickle Cell
Day. In a desire to
help create a great-
er awareness of sickle
cell disease (SCD) and
increase their eforts to
ind a cure, Pizer invit-
ed members of the Black
Press to meet and discuss
with key members of
their rare disease med-
ical and management
staf the state of (SCD)
and their search for a
cure.
It is estimated that
sickle cell disease (SCD)
afects
approximately
100,000 Americans and
1 out of 365 Blacks in the
United States, according
to the Centers for Dis-
ease Control and Preven-
tion. About 1 in 13 Blacks
are born with sickle cell
trait (SCT).
Sickle cell disease is
“
porate afairs lead for
Pizer’s inlammation,
immunology and rare
disease unit, introduced
the participants who
shared why they’ve been
so devoted to creating
greater awareness about
(SCD), and the opportu-
nities available to assist
those that struggle with
this debilitating disease.
Sonja Banks, the CEO
of the Sickle Cell Disease
Association of Ameri-
ca, Inc. (SCDAA) shared
how alarmed she was to
learn in 2010 that “in a
hundred years of discov-
ering the sickle cell dis-
ease, only one FDA drug
had been approved and
it wasn’t even for sickle
cell. It was just as heart
wrenching then, as it is
now, to know that our
people are still going to
hospitals as their medi-
cal home. Why don’t we
have a cure?”
Pizer’s Chief Medical
Oicer Dr. Freda Lew-
disease.
Although some of the
drugs that scientists have
discovered have just not
been good enough or
safe enough, according
to Lewis-Hall and Banks,
the reason why a cure
hasn’t been developed is
because African Ameri-
cans haven’t participated
enough in clinical trials.
All of the participants,
including Dr. Kevin Wil-
liams, the vice president
of global medical afairs
in Pizer’s rare disease
unit, recognized that Af-
rican Americans are re-
luctant and oten afraid
to participate in clinical
trials, because of the
lingering distrust of the
medical ield due to the
Tuskegee Syphilis Study
and oten poor treatment
received at medical facil-
ities.
Thomas Watkins, the
publisher of the Daily
Challenge, said “Blacks
will participate in clin-
The reason why a cure hasn’t been developed
is because African Americans haven’t partici-
pated enough in clinical trials
one of the most prevalent
genetic disorders in the
U.S. It is a rare and debil-
itating chronic disease
with lifelong clinical im-
pact and reduced life ex-
pectancy; life expectancy
is 48 years for females
and 42 years for males
with sickle cell disease.
There are more than
100,000 people in the U.S.
living with sickle cell dis-
ease, and many of them
experience multiple va-
so-occlusive crises each
year. These painful cri-
ses result in more than
75,000 hospitalizations
per year in the U.S., with
an average hospital stay
of approximately six
days.
Niesha Foster, the se-
nior director and cor-
is-Hall recalled the joy
she initially felt intern-
ing at Howard Universi-
ty Hospital ater graduat-
ing from medical school,
but when she attempted
to ease the pain of a tod-
dler living with sickle
cell, that joy was replaced
with an overwhelming
sense of futility.
“I heard an unbeliev-
able piercing sound from
a toddler in a sickle cell
crisis,” said Lewis-Hall.
“I tried to hydrate her
and provide some pain
relief…It was at that mo-
ment that I realized how
helpless I was without
the tools.”
Thirty years later,
Lewis Hall said that phy-
sicians still lack the nec-
essary tools to treat the
ical trials as long as
they’re not the only
ones.”
Banks said that the Af-
rican American commu-
nity needs to get over the
stigma associated with
clinical trials.
“The syphilis study
wouldn’t happen again,”
said Banks. “We are too
much of an educated
community now … and
who’s going to make
these drugs come to fru-
ition? If we don’t par-
ticipate we’ll never ind
treatment or a cure.”
“A lot of people have no
idea about what it means
to participate in a clini-
cal trial,” says Dr. Lewis
Hall … Some of it is re-ed-
ucating about the things
that have happened in
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PHOTO COURTESY OF THE NATIONAL INSTITUTE OF HEALTH
Pizer Oicials Seek Black Participants for Sickle Cell Trials
Normal and sickle shaped red blood cells
our collective African
American past.
“We need to be edu-
cated speciically what
it really means to be in a
clinical trial,” said Lew-
is-Hall. “Our absolute
best advocates are people
who have been in clinical
trials.”
Today’s clinical trials
are also highly regulated
by third party experts
and require informed
consent.
Marie Ojiambo, who is
not only a SCD patient
and Pizer intern, but
is also an advocate that
works with SCDAA said
that it’s easier for her to
go to a SCD patient and
get them to participate
in a clinical trial than it is
for a doctor.
There are 37,500 clini-
cal trials currently avail-
able, said Dr. Lewis-Hall.
Pizer is currently in
Phase 3 of their clinical
trial and needs to enroll
350 participants within
the next 2 years. Since
they’ve already obtained
some positive results
from their Phase 2 trials,
they hope to have a drug
available in 3-5 years.
Dr.
Lewis-Hall
ex-
plained that it usually
takes 15 years to bring
a new drug to trial. “So
by the time that you get
to Phase 3, it would be
an unusual event for a
company to walk away…
and if this drug doesn’t
make it because of a lack
of participation, it would
be a crying shame.”
For more information
about clinical trials log
on to www.clinicaltri-
als.gov or www.geth-
ealthystayhealthy.com
and click on the link,
“Find a Trial.”
We honor the many
accomplishments of
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