BUKOLA Bolarinwa, president
of the Sickle Cell Aid Foundation
in Abuja, says Nigeria has the
highest number of people living
with sickle cell in the world,
with little or no funds to treat the
disorder.
Speaking to Al Jazeera recently,
Bolarinwa said: “You have
millions of people living with
sickle cell, hundreds of thousands
of births every year, way more
than HIV, way more than cancer
and a lot of other diseases that
get way more funds…Sickle cell
doesn’t get enough publicity.”
The advocate who spoke while
on The Stream, one of Al Jazeera’s
flagship programmes, requested
that the talk show explore an
experimental gene therapy that
is offering hope to those who
suffer from sickle cell anemia, an
inherited condition that can cause
crippling pain and shortened
lifespans.
A French teenager with the
genetic condition achieved
complete clinical remission after
researchers in Paris injected his
stem cells with an anti-sickling
gene from his own bone marrow.
So far it seems to be working
for the teen. Fifteen months since
his last treatment, the patient is no
longer dependent on medication
and his blood cells show no sign
of the disease.
“When this news came out, it
was in most major news outlets
but…there wasn’t any way for us
to ask questions,” Bolarinwa told
Femi Oke, The Stream host.
“I work with a lot of people
that live with sickle cell disease
and they all came to me and said,
‘What does this new breakthrough
mean for us? How soon is it going
to be applicable? … Can we call
this a cure?’ I wasn’t able to get
answers to those questions.”
Jamie Wells, director of
Medicine, American Council on
Science and Health, and Julie
Kanter, director of Sickle Cell
research at University of Southern
Carolina, had the answers
Bolarinwa had been waiting for,
but probably not the ones she
hoped for.
Wells called for “cautious
optimism” as more patients
and more time were needed to
monitor the long-term efficacy of
the treatment. She also warned
that the treatment was a long,

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involved process, with risks, so
is typically reserved for the most
severe cases at this early trial phase.
Julie Kanter, a specialist in the
field, added that the procedure is
right now not available for mass
production and remains quite
expensive.
“My goal one day somehow is
that, when you know you’re going to
have a baby with sickle cell disease,
we can take the cord blood from that
baby and insert the gene into the
cord blood and give that doctored
cord blood back before the first year
of life. But we’re not there yet.”
Kanter suggested the focus in
Nigeria for now should rather be to
have newborn screenings. “Because
the most important thing we can do
first is start patients on penicillin.
Penicillin is not expensive; the
problem is diagnosing kids right
away at birth and getting them the
help they need.”
Bolarinwa said there is cure for
sickle cell disease: bone marrow
transplants. But even for those
Nigerians who find a matching
donor, this remains out of reach
due to the costs involved.
“Things like stem cell transplants
are completely out of it because
you have to travel to India and
other countries for them to do it;
it’s not really available here,” she
said.
“A lot of the therapies are great;
they’re good news. But if the
people who need it the most can’t
afford it, it really seems like just
another far-fetched thing.”
She says that many Nigerians
can’t even afford Hydroxyurea, a
drug given to most children who
live with sickle cell in the USA.
“I take it and it’s really improved
my life but a lot of people in
Nigeria can’t afford it,” she added.
Kanter admitted pricing was “a
huge problem. Because where are
most babies born with sickle cell
disease? In Sub-Saharan Africa and
in Nigeria.”

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