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UNSICKLE: Changing The Face Of Sickle Cell, One Child At A Time

 

                                           

Sickle cell Anaemia is the most common inherited blood disorders and is responsible for the death of a lot of young Nigerians. It has cut short a lot of dreams and aspirations and the morbidity associated with it has caused a lot of untold hardship to families, caregivers, and patients with the disease. This hardship is both psychological, emotional and financial and it has even caused disintegration of families.


This condition has been viewed from time immemorial as an incurable disease which leads to at best, a lifetime of suffering, pain and regular trips to the emergency room and at the very worst an early death. The picture has always been grim and this has led to a lot of proactive measures to prevent this disease, such as screening of couples planning to get married. It is not rare to find a couple calling off their engagement due to incompatible genotypes.

 

However, someone is doing something novel and trying to change the sickle cell story in Nigeria and sub-Saharan Africa. Some people suffering from this condition in developed countries are eligible for a special type of treatment which cures the disease and changes the genotype of the individual. This amiable Doctor is pioneering this treatment in Nigeria and has already treated some children with this disease and affected lives positively. HelloCare had the privilege of interviewing him and this is what he had to say.


Could you please introduce yourself, sir, stating your academic and professional accomplishments?

I am Professor Bazuaye Godwin Nosakhare, Consultant Hematologist and Stem Cell Transplantologist, MBBS Benin, FMC (Path), CERT (HSCT) Switzerland. Pioneer Stem Cell Transplantation and Apheresis in Sub Saharan Africa.


What is this new therapy that you are offering to patients with Sickle Cell Anaemia in Nigeria? What is ground-breaking about it?

We performed the first transplant to cure sickle cell disease patients in 2011 by changing the genotype from SS to AA and we did a total of three successful transplants in the University of Benin Teaching Hospital up till 2013. By December 2017, we collaborated with the first private transplant centre to recommence transplant and we have successfully done three and presently we are working on the fourth one.


That’s really wonderful. How does this treatment work?

We find a genetically matched donor, preferably a sibling. We then proceed to destroy the marrow of the patient and then take stem cells from the donor and transplant to the patient and finally nurture it to engraft and take over the marrow of the patient.


Exceptional! Cost is an important fact that could encourage or prevent people from accessing treatment. What is the cost of this therapy?

It costs over sixty million Naira in Europe and the United States. In Nigeria, it is about thirteen percent of the cost it takes to perform the procedure in Europe and America.  Power alone costs about three million Naira for the three months the patient will stay, imported drugs will cost another four million Naira, blood products and support about five hundred thousand and hospital stay another five hundred thousand. This brings it to a total of about Eight million Naira.


That is still pricey and above the reach of the average Nigerian patient. But the financial implications are far less than if the procedure was done abroad. How long does this treatment last and is it a lifelong cure?

The patients’ spend an average of 2-3 months in the hospital and then have follow-up visits in the clinic for one year and then that’s all.


That is really awesome. You mean they are free from sickle cell disease for life?

We have an 80-90% chance for a cure. Once the genotype changes, the cure is achieved and they are free from Sickle cell anaemia and its complications for life.


You must have experienced a lot of challenges.

Yes, a whole lot, the most important challenges we’ve had to deal with are power, cost of importing drugs and lack of government/NGO support.


Those are really serious challenges. If I may ask what is the difference between this and gene therapy?

Gene therapy needs no donor. It is still experimental and it makes use of a virus as a carrier to introduce a genetic code into the gene of the patient, which corrects the genetic mutation that results in sickle cell anaemia.


Are you planning to venture into this later for our Nigerian patients? Because it seems it’s even possible to use gene therapy to cure adults.

Yes, but in the next few years, when it is no longer an experimental therapy. I doubt many Nigerians would be able to afford it because it’s in millions of dollars.


Are there any conditions that make an individual ineligible for Stem Cell Transplant? Also, what does the future hold for Sickle Cell Anaemia?

Stem Cell Transplant is better before the age of 15, although there are newer methods for older patients. As for the future, like all disease conditions, prevention of the disease is better and easier than treating or curing it. The government should be more proactive in educating people about the disease. Also, making genotype testing free and compulsory for all Nigerians would go a long way.


Thank you very much, sir, for a very enlightening conversation. Any final remarks?

In some countries like Brazil, transplant is free for sickle cell disease patients and even in Algeria, stem cell transplant is free for any disease. So the government has to be more involved and if they display enough willpower, we will be able to go a long way in treating this disease. If the wives of all the Governors in the thirty-six states volunteer to sponsor a child for transplant every year, we have 37 children saved every year. Well-meaning philanthropists can also key into this. The government should also invest in building an international transplant centre in Nigeria to attract medical tourism and encourage existing private transplant centres by creating a good enabling environment like good roads to the centres, dedicated power lines, soft loans with reduced interest and a reduced tariff on imported drugs. Non-governmental Organizations can also complement government in all the areas I mentioned above.



Thank you very much again, sir, for all your efforts and we look forward to a time when Sickle Cell Anaemia would be a thing of the past.

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