‘No money for cure But Nigeria has highest rate of sickle cell anaemia in the world. ’

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‘No money for cure But  Nigeria has highest rate of sickle cell anaemia in the world. ’




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.


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Speaking to Al Jazeera last week, 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.


Bukola Bolarinwa
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, involved process, with risks, so is typically res