WEBVTT

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[music] The Clarke brothers look as
carefree as any other boys their

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age. Eight-year-old Benjamin seems to be
the picture of health. Debra Clarke is

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his mother. Benjamin is your
normal everyday little boy. He\'s,

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he\'s very affectionate. He loves to play
like your average normal little boy.

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But Benjamin is not your average everyday
little boy. Benjamin has a blood

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disease that sends him to the hospital
an average five times a year. Benjamin

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has sickle cell anemia. Sickle
cell disease is very serious. Um,

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even when children don\'t appear
to have any problems. Sickle

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cell is doing damage within the body.
Dr. Sohil Rana [ph] from Howard

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University has been fighting sickle
cell for more than 20 years.

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About 10 out of 100 children with sickle cell disease
before they reach 15, they will have developed a

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stroke. Another 10 percent would have
had silent strokes where it has chipped

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away on the ability to perform
in school or other daily

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functions. How afraid of you for yourself?

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[music] Very afraid.

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[music]

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Nothing about sickle cell is as it seems.
It was discovered almost 100 years

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ago, but few people seem to know much
about it. And it\'s caused by a defective

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gene. But few of those at highest risk ever get
genetic counseling. And although people with the

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disease look healthy, many die before
they turn 50. And it\'s often a silent

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process. Sickle cell slowly
destroys many of the body\'s

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internal organs. In Benjamin Clarke\'s case,
sickle cell disease has already destroyed

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his spleen, and damaged his
gallbladder, bones, even his brain.

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Benjamin has been in... so
much severe pain I begged the

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doctor, \'Could you give him a little bit more
pain medication to... kind of like hold him

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over?\' Sickle cell is a
disease of the red blood

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cells which carry life-giving oxygen to all
the body\'s organs and tissues. Normally,

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red blood cells are round and soft
so they can easily squeeze through

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tiny blood vessels. In people with sickle
cell disease these cells can suddenly

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change shape and become stiff and pointed.
When this happens, the

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cells can obstruct blood vessels, cutting
off the supply of oxygen, damaging nearby

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tissues and causing intense pain.
This is called a sickle cell

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crisis. When it strikes, the effects can be

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devastating. When Benjamin
goes into crisis, he\'s

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in a lot of pain. I get him to
the hospital as quickly as I

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can. You never know when the
crisis will hit him, he\'s fine one

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minute and in terrible pain the next.
We\'ve been

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to Howard\'s Hospital so many times
the doctors and nurses know

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him. When my son Benjamin
Clarke is in sickle cell

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crisis, and he needs to see a
doctor right away. Come on in.

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[sil.] Sometimes Benjamin is

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in so much pain it\'s difficult for
him to even sit while they take his

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temperature. They\'ll draw some
blood for testing; if his

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hemoglobin count is low, that\'s dangerous.
It means he needs another blood

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transfusion. Now, we have to
go to examining room, okay?

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Once we check him into the hospital, the doctors
will give him morphine. During a crisis, the

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pain is overwhelming. It\'s
terrible to watch my child

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go through this. All I
can do is just stay with

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him, pray and wait for the crisis to pass.
30 times every hour

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this nightmare is repeated somewhere
across the country. Almost

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anything can trigger a crisis: fatigue,
becoming too hot or too cold, a change

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in seasons. I didn\'t even know sickle
cell could be like this. It\'s a

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nightmare. It really is. Two weeks
after this interview, Benjamin

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was back in the hospital. Another crisis.

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[music] It always catches you by surprise.
Uh, we\'re always,

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uh, looking for it to happen. For
Thomas Stephenson, the vigil never

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ends. He must always keep a close
eye on his five-year-old daughter,

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Lena. Yes, well, it kind of keeps you on pins and needles
cause when she catches a cold, it can develop into a

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crisis. When she gets the flu, it can develop
into something. Anything can trigger it

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on. Sickle cell is found in countries around
the world. But it primarily strikes people

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with African ancestry. In
America, one in 500 blacks has

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the disease and one in 1.6 million whites.

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Overall, 50,000 Americans suffer with
sickle cell disease and more than a

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million people are healthy carriers of
the gene that can cause it. So far,

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there is no cure.

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We tend to see a population of patients who are very, very ill. Dr.
Oswaldo Castro runs the sickle cell center at Howard University.

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It is heartbreaking to
see how many problems

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uh, that sickle cell patients have.
And uh, we uh, would be pleased, uh,

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to no end if we could find
something that would be

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effective to try to prevent and treat the sickle
cell patients. Until that elusive treatment

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is found, patients and their parents
lean on each other. I knew that

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there was a disease and I always thought
that the disease affected blacks

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only. And, um, but I didn\'t know
the, uh, ramifications behind

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crises or anything like that. I always
thought that it was just a blood disease and

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that was that. When you have to
watch your son or daughter with the

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sickle cell disease and
how they agonize sometime

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in pain and you really never know, um,

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how bad things are going to get. The disease
itself really changes a person\'s total

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life. It changes that person\'s life, plus everybody
around them. The children of these parents are

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all treated at Howard University, which
sees more sickle cell patients than any

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hospital in the country. The sickle cell
center began in 1972 under the leadership

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of Dr. Roland B. Scott, a pioneer
and national leader in sickle cell

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research. Money from the federal government
helped build the center and community

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funding paid for a van to travel the black
neighborhoods of Washington, D.C., educating

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and screening for this disease. And
I have to give President Nixon his

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due. Patrick Swaggart is President of
Howard University. President Nixon,

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uh, his administration in 1972 is
part of that initiative to place

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dollars in resources next to some
of these, uh, pernicious disea-,

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particular pernicious
diseases, and sickle cell

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is certainly one of them. But two decades later, sickle cell in many ways
has become a forgotten disease, much of the black community have become

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apathetic, and federal funds have slowed to
a trickle, this despite recent advances in

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treatment. Now, almost every child
gets tested for sickle cell at

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birth. Most of those with the disease are
given antibiotics like penicillin to ward off

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infection. And there\'s a new
drug, Hydroxyurea, which can

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reduce the number and severity of crises.
But still, there is no cure and

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precious little money to find one.
Dr. Floyd

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Melveau is Dean of the Howard University School of Medicine. I think if it were disease that
did not primarily affect African Americans and people of color, uh, I think there would

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probably be more support uh, financial support
for the disease. The sickle cell center at

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Howard is now dependent on money from the
University, as well as generous private

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donations from organizations such as the
United Food and Commercial Workers Union.

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Still, the demand for medical services
and community education continues to

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grow and expenses continue to mount.
The van that once brought Outreach and

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information about this disease to the
community sits idle behind a steel

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fence. There is no money to renovate it
or to send it into the neighborhoods.

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Funding now is being placed next
to, uh, diseases, perhaps, that

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have a more modern cachet, have a more, uh,

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immediacy in a sense, in the public\'s
eye than, than sickle cell. Uh, I would

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ask, uh, however, anyone, uh, to visit,
the clinics and to visit with the

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parents, uh, and you\'ll see, uh, another kind of
immediacy, uh, that I think is overwhelming and

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certainly compelling. Devon
Williams is in sickle cell crisis.

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How are you feeling? Terrible. Where does
it hurt? My stomach, chest, arms, back

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and legs. Do you have pain most of the

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time? Yes. How old are you? Twelve.
And how long have you

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had this kind of pain? Since I was a baby.

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Michelle Commodore has suffered that
kind of pain for more than 30 years.

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It\'s like... having... somebody

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squeeze your two temples in as
hard as they possibly can with

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pressure. I\'ve never been able to
describe it at my age of 31. It\'s a

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excruciating pain. I end up on the floor,
underneath the bed and I roll from one end of the

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house to another. Sometimes I cause myself
more damage \'cause I hit my head against the

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concrete floor or against the wall.
And with each crises comes

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a threat of fatal complications.
She wanted to be a

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nurse. And that\'s what
we\'d all planned for.

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Terry Griffin\'s daughter Tiffany
died from an infection caused

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by sickle cell disease. She was nine
years old. And she had a wonderful

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life. Tiffany had a wonderful life.

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Terry and others around the country try to keep the memory of
their children alive through rallies and support groups. But

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so far, it\'s been difficult to get the attention
of decision makers. There are a whole lot of

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diseases out there. And people, uh, tend

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to focus on a disease that
may involve themselves or

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their family or friends and
they forget about the ones that

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don\'t affect them personally. Winslow
Seale conducts genetic counseling for

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the center. Given the general prevalence of sickle
cell, the likelihood of someone here having the

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disease? Excellent. Everyone\'s life is
touched by this. If you go to a concert or a

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football game and there are 500 people there,
that means 50 of them have sickle cell

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trait. If you go to a Frankie Beverly concert
and there are 5,000 people, 500 people have

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sickle cell trait. That\'s how prevalent it is.
So, this happens every day, but we need a, a

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greater public education in
order for people to notice.

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If the community feels that sickle cell is a disease
of importance, a disease that still requires

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significant investigations. Then, I think
the community really has to, has to say

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this, and they have to tell the government, including their
representatives that they sent to Congress and everybody

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else. Perhaps, uh, persons like myself who have
the opportunity to be in a leadership position,

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plus we haven\'t been as aggressive, as outspoken
as we need to be to indicate that this

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is not an old disease, that is, to say it\'s
not \'passé.\' Passé? Look at the face of

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Devonte Kimson. His brother died from
sickle cell and he has the disease,

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too. Do you worry that you might die because
your, \'cause you saw your brother die?

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[music] Yes. Look at the face of Benjamin

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Clarke. The scariest part is it feel like I\'m
dying or something like that. Look at the

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face of Devonne Williams.
Is the pain constant?

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Yes. Look at the faces.
These are the faces of

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sickle cell disease. These
are the faces of our

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children.

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[music]