Easing the burden of sickle cell disease in Africa: more campaigner push for improved care

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00:00Well, sickle cell anemia is an inherited blood disorder that can leave sufferers struggling

00:04with serious, sometimes excruciatingly painful health complications. Most of the 8 million

00:11people worldwide who have the disease are of African descent, and an estimated 240,000

00:18children are born with it on the continent every year. With the right care, though, those

00:23with sickle cell can lead full and active lives, but everything from limited awareness

00:28to long delays in detecting SCD can negatively affect survival rates. But increasingly, more

00:34campaigners are giving their all in pushing for improved care within Africa. Christian

00:41Bim is a member of one such advocacy group, and he joins me now from Nairobi. Christian,

00:46thanks so much for speaking to me. Now, first of all, give us a sense of where things stand.

00:50What kind of progress has there been over the years in terms of understanding and available

00:55treatment of sickle cell in Africa or elsewhere? Thank you so much. What we have to know is

01:02that the disease was discovered in 1910, and until 1940, the hereditary aspect of it wasn't

01:09really understood. And one of the progress is that in 2008, the United Nations has recognized

01:15it as a public health priority, and the day of June 19 was recognized as the World Sickle

01:22Cell Day. And also, we have now more understanding of the different types of sickle cells. For

01:30example, the one that we find in the west of Africa, which is called the sickle cell

01:36disease SC, the one in the middle of Africa, the central of Africa, which is called the

01:41SS, which is the Mold Saver, and even the one found, for example, in India, which is

01:49called the S Pujam. And what is that in short? It's just a deformation of the vertebral

01:57cell for a normal person, which is round and flexible with a life of 120 days, but for

02:04a sickle cell patient, it is in the form of a banana with a life of 10 to 20 to 30 days,

02:11which is also very rigid, which creates now some difficulty for the navigation of the

02:19oxygen through the blood vessels and creates some problems like pain, anemia, why those

02:27people have a need of blood transfusion, and also creates some vulnerability to infection,

02:33for example, the pulmonary infection before encapsulated germ infection. And, but what

02:41we know that the rate of mortality is really high between one day to five years, but with

02:48the progress of the medicine and the last discovery of some medication, especially in

02:53the US, those people with a good treatment and a good follow up, they can live longer

02:59like normal people without this disease.

03:03So your organisation is working really hard to raise awareness of the disease of sickle

03:08cell. How do you do that? Are you trying to attract more attention to support sufferers?

03:14Are you pushing for more research and development? What are your priorities, particularly within

03:17the African context?

03:19Okay, thank you so much. So the Belgium Association of Psychiatric Diseases, which is President

03:26Joe Bantuanga, what we do is first of all to create awareness, especially in terms of

03:32knowing this hemoglobin status. Also, we, before, for example, before getting married,

03:39or before thinking about a family project, we also engage with politics to give better

03:47support to those people. And what we also do, we give some small training to the people

03:53affected by the disease, because some of them, because of the unpredictable crisis, they

04:00have difficulty finishing their journey of schooling. They have difficulty to have access

04:05to employment. So those training is really helpful for them. And also, we give psychosocial

04:12support because of the problem of self-esteem that they have, the problem of the culture

04:19taboo in some cases, and also the problem of addiction that some of them are going through,

04:26the addiction to sex, drugs, or alcohol. But the most important thing to know is that

04:31with the mixing of the population of immigration, the risk of psychosis disease, increasing

04:38of psychosis disease in Europe, it's really higher. That's why we are coming up now with

04:43the first European Congress on psychosis disease, where we will now go to advocate at the European

04:51level for recognizing psychosis disease as a public health priority to all the countries

05:00which are part of the European Union, and also for, yes, for screening, for making mandatory

05:08screening for all the women at the time of childbirth. Thank you so much, Christian,

05:14for talking us through the work that you are doing with your organization to try and raise

05:20awareness about the impact of sickle cell anemia in Africa and elsewhere.

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