Sep 13, 2026 · 1 hr 12 min · 10 segments
This episode discusses living with sickle cell disease and its impacts. We are joined by SOuL Just Be co-editor Ayuk Besong Anne-Chantal and Dr Lewis Thomas to explore the complexities of living with…
Ayuk Besong Anne-ChantalGuest
Lewis ThomasGuest
Chantal BoyleHost
Well, actually, there's a bone marrow transplant, which is a well-established cure for sickle cell in that you are receiving the donated normal bone marrow and blood forming stem cells from somebody else.

So many people receive bone marrow transplants and they go on to live without the complications of sickle cell because they're producing normal red blood cells.

And now there's new gene therapies, which are basically a way of editing the DNA from the stem cells that are within the bone marrow of our bodies.

So if you edit the DNA, you take the stem cells out, you edit the DNA in them, and then you put them back inside, those red stem cells that produce new red blood cells will then be sort of free from sickle cell complications.

I wouldn't say that there's a cure that's accessible to people because both of these things are very expensive and the majority of people living with sickle cell around the world aren't able to access them.

So it might as well not be a cure in the sense that, why is there still so many people living and suffering from sickle cell when there's a cure? There's not.
Now, in 20, for example, part of the new framing that is being pushed for for sickle cell disease is to limit it to continents and to see it more like a global issue.
It affects people of African origin, people from the Middle East, people from Asia, India.
But with the number of years we have had for the past, between 2010 and now, the world has become such a melting pot of cultures and mix of races that...
We think if we continue with framing sickle cell disease in, oh, it affects this continent and that continent and people from this part of the world, there is going to be a huge population that thinks we are not concerned.
And before we know it, we'll realize that there is a huge population.
of people living with it or affected by it that have not been identified and that are not getting the help they should get.
Because great-great-grandma had gotten married to somebody from India or great-great-grandpa had gotten married to somebody from the Middle East.

Well, actually, there's a bone marrow transplant, which is a well-established cure for sickle cell in that you are receiving the donated normal bone marrow and blood forming stem cells from somebody else.

So many people receive bone marrow transplants and they go on to live without the complications of sickle cell because they're producing normal red blood cells.

And now there's new gene therapies, which are basically a way of editing the DNA from the stem cells that are within the bone marrow of our bodies.

So if you edit the DNA, you take the stem cells out, you edit the DNA in them, and then you put them back inside, those red stem cells that produce new red blood cells will then be sort of free from sickle cell complications.

I wouldn't say that there's a cure that's accessible to people because both of these things are very expensive and the majority of people living with sickle cell around the world aren't able to access them.

So it might as well not be a cure in the sense that, why is there still so many people living and suffering from sickle cell when there's a cure? There's not.
Now, in 20, for example, part of the new framing that is being pushed for for sickle cell disease is to limit it to continents and to see it more like a global issue.
It affects people of African origin, people from the Middle East, people from Asia, India.
But with the number of years we have had for the past, between 2010 and now, the world has become such a melting pot of cultures and mix of races that...
We think if we continue with framing sickle cell disease in, oh, it affects this continent and that continent and people from this part of the world, there is going to be a huge population that thinks we are not concerned.
And before we know it, we'll realize that there is a huge population.
of people living with it or affected by it that have not been identified and that are not getting the help they should get.
Because great-great-grandma had gotten married to somebody from India or great-great-grandpa had gotten married to somebody from the Middle East.
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