Wednesday, April 1, 2009

Sickle Cell Disease (SCD) is a disease that I have personally been affected by. I lost a very close friend to the disease and like many Nigerians, I know people who either suffer from the disease, or are discouraged from marrying the one they love because either is a genetic carrier of the the disease. Given these realities, I was ecstatic to learn of a remedy to SCD that was discovered in Nigeria but upon further research, I have more questions than answers.
A family in Nigeria knew of an indigenous remedy for sickle cell anemia - a disease suffered by at least 12 million people, with 70% of them residing in Africa. The family shared their recipe with Nigeria's National Institute for Pharmaceutical Research and Development (NIPRD) which in turn developed a drug called Niprisan. Niprisan was officially launched by former President Obasanjo in 1996. Amid controversy, NIPRD sold the rights to develop Niprisan to the Nigerian subsidiary of an American company - Xechem International, in 2003, with an understanding that the drug, marketed as Nicosan, would be manufactured in Nigeria.


Unfortunately, Xechem Nigeria became mired in corruption scandals. Its state-owned partner, Sheda Science and Technology Complex (SHESTCO), which was created by the Nigerian government to "help Xechem Nigeria produce and commercialize Nicosan", was also accused of fraud to the tune of N400 million in public funds. Xechem Nigeria's parent company filed for bankruptcy in 2008. In addition, company shareholders have leveled the following complaints,
"...that the company ... failed for 12 months to retrieve from customs in Lagos US$4.3 million in new equipment purchased for Xechem's manufacturing facility in Abuja and US$2 million in equipment removed from Xechem's former facility in New Brunswick, New Jersey.
[that] [t]here had been "no movement on Food and Drug Administration (FDA) approvals in 16 months; ... the termination of planned clinical trials for Xechem's sole marketable product, Nicosan; and numerous allegations against the managing director of Xechem Nigeria".
It remains amazing to me that in this day and age, we are yet to fully conquer SCD. So, when I learned that there was a cure that came from Nigeria and from indigenous herbs in the form of Nicosan, I excitedly wanted to learn everything I could about it and share that information with anyone willing to listen. To then discover via research that after years over 10 years, Nicosan is still not reaching enough of the people who need it, was disappointing. To also learn that the companies charged with producing the drug - Xechem Nigeria and SHESTCO - were facing charges by the Economic and Financial Crimes Commission was even more disheartening. Assuming that Nicosan works, it has the potential to transform the lives of millions of sufferers not only in Nigeria, but indeed around the world. Why is there a holdup in production, and information about this medicine?

For a country like Nigeria which is obviously concerned with transforming its international image, Nicosan presents an excellent opportunity to present the country as a nation of scientific achievement and one that can change the lives of millions of SCD sufferers the world over. Why this golden opportunity has not been exploited is beyond me, but it is not too late. Sadly, the fact that the drug is riddled in controversy and that no clear information is readily available about the government's plans for the drug, other than that it will now temporarily manufacture the drug, only reinforces the many negative stereotypes Nigeria faces. This is unfortunate, and I hope that in the weeks to come, Nigerians and others hoping for more news, will learn more about this drug.

Considering that President Yar'Adua is concerned with the "need to present an optimistic outlook, renew the national spirit, and reinvigorate [citizen's] faith in Nigeria," Nicosan could be the wonder drug that families are desperately looking for and that the Nigerian psyche needs. The successful manufacture and use of this drug would instill national pride and optimism. It would elevate the level of trust and respect for the Federal Government that is currently lacking. Additionally, a thorough investigation into the missing N400 million that Xechem Nigeria and SHESTCO are accused of stealing would remind Nigerians that nobody is above the law and no person or organization will avoid justice, if necessary.

Nicosan presents an opportunity for Nigeria to do something incredible - to mass manufacture a local remedy to a disease that takes lives. Such an accomplishment would be positive and would be one of many ways to transform Nigeria's negative international image while coincidentally instilling pride in Nigerians. But even more importantly, it would save lives.

I can only hope that Nicosan will prove to be the wonder drug that sickle cell sufferers and Nigeria needs.

Please visit Sicklecell.Blogspot.com. The blog owner, Vixen W. has been using Nicosan and in May 2009, will be crisis free for up to a year. I am rooting for her.

Thanks to blogger Akin, and fashion designer Folake of WEWE Clothing, for taking from their busy schedules to not just 'listen' (via Twitter) to me as I thought through this issue, but provide me with constructive leads and suggestions.

UPDATE (4/20/09): Ruth Akiboye and Paul Barton have created a Sickle Cell Guide available for download here. It is a short, but comprehensive, guide for parents of sickle cell sufferers.

Related Articles of Interest:
- Nigeria's Re-branding Effort
- Using Nigerians to Re-Brand Nigeria
- Re-Branding Nigeria: Success Is The Key
- The Nigerian Psyche
- Persistent Psychological Paralysis
- The Significance of Persistent Psychological Paralysis

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webround said...

is there a Nigerian law that prevents sickle cell carriers from marrying each other?

if this drug really works, then it's such a shame what has happened so far. hopefully now that you have blogged about it, maybe more people will become aware of the situation and something will be done.

i'm curious - the family that developed the drug initially, what have they been doing about the situation? did they raise an alarm? i would think that if someone birthed something, even if you're no longer in charge of things, u'd still have a vested interest and raise a public outcry if you feel it is being pushed into the ground

Lotanna said...

Yar Adua = total idiot and big fool. I will keep on saying it. The man is a sycophant and does not care about Nigeria. He only cares about his pocket and pleasing his political godfathers. He is yet to take one concrete action that will benefit Nigeria. Was it not him that said that Nepa would produce 6000 (don't remember the word) of electricity this year? Now they've turned around and said it won't happen. YarAdua is NOT my president. And he is NOT the president of millions of Nigerians. I did NOT vote him in and neither did millions of people who found FULL ballot boxes even though they were the first people to arrive at the voting station. I was still standing in the line to vote when they announced the results of the election. I cannot wait for Yar Adua's term to be up so he can get his stupid ass the hell out of Aso Rock. Rule of Law my ass. This is the bloody twenty-first century. Maybe I'm evil but sometimes I wish all the people in government would just die off so that the people that actually have good intentions and plans from Nigeria can get a shot. The presidency of the federal republic of Nigeria is a stupid joke. It is basically an ATM machine that a few powerful old men in the North have been passing back and forth among themselves for ages.

This drug could have done so much good. As a president, Yar Adua should have put personal pressure on all parties involved to ensure that they get to the bottom of this as quickly as possible and to ensure that well supervised and well documented drug trials begin in the country. You would think that our president would care about the health of our nation which has suffered under Sickle Cell Anaemia for so long. You would think that Yar Adua's administration would take aggressive steps to bring hope to millions of Nigerians and to permanently stop the generation of new cases by enforcing Blood type legislation.

But Yar Adua is the biggest fool I have ever seen. BIGGEST FOOL. He is such a pitiful waste of a presidential term it makes me cry to think about him.

Yar Adua does NOT care about Nigeria, and he should NEVER have been president. If you want to know what Yar Adua cares about. Go look at his son, Musa Yar Adua's Facebook page. That's where Nigeria's 2009 budget went. To the profile pictures of Facebook.

Naughty Eyes said...

I'm also surprised concerning the existence of such a "law". I saw several families that had SCD sufferers in the environment where I grew up and what we were made to believe was that it was a decision taken amongst the parents (who were carriers of the genotype)to have children despite the odds. I've always wondered if love is enough to justify putting one's kids through the agony of crises.
Concerning the drug, I did see news flashes on it courtesy NTA but as is typical with most Nigerian situations, nothing will get done.
Honestly, I'm tired of "pissing in the wind"...

Naughty Eyes said...

Interestingly, I've tried checking the fire-spitting Lotanna's profile to see if his/her bark is as good as her bite.
It was private...
I guess that says it all...

Adaeze said...

My BIL had sicklecell. I do have to say I kind of agree with Lotanna - and Yar'Adua needs to do a WAY better job. But I couldn't agree with you more Solomonsydelle. It's time! I don't want to see another opportunity wasted on Nigerian development. I mean, this is SO great and wonderful, but will only be a tragic story unless the people in power do what they're supposed to do. Thank you for another educational post.

Danny Bagucci said...

Been on Vixen W's page a few times last year and this year but din't realize the rug had Nigerian origins. Sadly, I've also lost a close friend and also a family member to SCD as well as being aware of several people who are currently sufferers. Wasn't aware there was a law to that effect though.. Its obviously a good thing for the image launderers to latch on to!


@ everyone: I had always been under the impression that carriers would not receive a marriage certificate if they chose to marry one another. I could be wrong. But, I am trying to confirm my impression with the actual law. If I do not find it in the next few hours I will definitely correct the post. Thanks for pointing out the potential error. Off to remedy the situation and will be back to comment. Thanks so much and please be patient.

9ja_Kuti said...

i wouldnt be surprised if the deals for the drugs production was built on corruption from the get go. it just now mutated into something uncontrollable. our thoughts are always how to personally make a buck and not how someone elses life would be made better from our labor.

Folake said...

I have a lot to say about this, but will keep it short and simple. Until recently, you don't meet a potential mate and ask "do you have sickle cell traits?" You fall in love, get married, get pregnant (not necessarily in that order) and while you are pregnant, the issue arises through blood work. Back then, you didn't have the option to terminate the pregnancy, now, thanks to technology, you have a choice (this also depends on how far along you are in the pregnancy). I DO NOT support terminating pregnancies, however, you have to live in the life of someone who lives with the disease, a family that caters to a patient to truly know & understand the depth and seriousness. If both you and your mate have the SC trait, the stats are that 1 out of 4 of your kids will have SC, but that is not entirely accurate - also, you are not in the position to choose or decide how the arrangement will go. Sadly, in Nigeria, they still do not have the technology to decide if the fetus in your womb will have the disease or be a carrier.

So while it's easy to judge parents of SC patients, it is a very painful process for the patient and family. It is also one disease that does not receive the attention and funding it needs and deserves. You never see it televised (at least in the US). The number of people that have no clue what SC is - never heard of the disease is so alarming (even amongst Africans), yet everyone has heard of cancer and SC patients are subjected to using a cancer drug, hydroxyurea, to survive. Is that sad or what?

Most Nigerians do not even know they carry the trait until they find themselves in situations where they either want to donate blood, need blood, or as mentioned, get pregnant/married.

As far as the law stated above, to my knowledge, it's not set in stone. It was a law set up to attempt to educate folks and make it seem like "they" were finally paying attention to this disease, but it was never followed through. I stand to be corrected, however.

Folake said...

SD, btw, thank you! Got carried away earlier and forgot to thank you for bringing awareness to Sickle Cell Disease. Once again, this is a very informative post.

N.I.M.M.O said...

I am actually surprised at this development. After all the fanfare of its launch and all, I'd thought that finally, all was well and SCA sufferers have got a remedy. This is a rude shock.

In the late 1980s, we celebrated the success of Dr. Sunday Fadulu, a Nigerian who successfully treated SCA with extracts of the roots of Zanthoxylum fagara (called Orin Ata in Yoruba - if you grew up in the South-West you would know those long, red-orangeish, rough looking chewing sticks favored mostly by the old folks). The curative principle was called Fagaricin then.

I wondered what came of it particularly as I was made to understand that Fagaricin is different from the active principle in NICOSAN.

Does this mean that we have two different drugs for SCA? If yes, why hasn't more work been done on developing them? Dr. Fadulu's work already has the US FDA first level approval a long time ago.

Could this be 'Big Pharma' at work? [Conspiracy Theory 1]

I sincerely wonder at the criteria used for choosing Xechem as manufacturing partner as it appears to be more of a research and development company than a drug manufacture and marketing one.

If the FG really needed a partner they could have out-sourced the manufacturing to the several national/multinational pharmaceutical companies here in Nigeria or abroad rather than saddle itself with a liability as Xechem turned out to be.

Beauty said...

“Nowhere is sickle cell disorder more common than in Nigeria, but no structure has been put in place to address the disorder,” - Olu Akinyanju, chairman of Nigerian Sickle Cell Foundation. Excellent reporting, thank you for the education.

RE Ausetkmt said...

This medication could actually save lives around the world, yet there is some village argument basically; which is stopping this from happening ?

heyyy-oooo my brothers, mek it stopo now.
help the sick and stop playing games when lives are at stake.

AnyaPosh said...

Interesting post. I also know a lot of people who have been affected by the condition.

And correction, Obasanjo was president in 1999 & not 1996 like you have up there. I'm sure it was a typo.

Buttercup said...

thanks for this enlightening post..it's just so sad there's always unnecessary red tape involved in anything Nigerian-related..

I really do hope something positive comes out of this very soon.

Doja 2.0 said...

@ N.I.M.M.O: I sincerely wonder at the criteria used for choosing Xechem as manufacturing partner as it appears to be more of a research and development company than a drug manufacture and marketing one.

Maybe for once the Federal government was actually doing something right? Drugs have to go thru clinical trials for years before they become fully accepted as medicine!

There are too many people suffering from sickle cell in Nigeria and it will be a real tragedy if the federal government ends up backing a drug that turns out to be a sham.

I am not saying the drug is useless I am only responding to the specific quote from NIMMO.

Cee said...

As a scientist, I read this and it brings tears to my eyes. Having worked with some members of NIPRD, I know that they have utmost passion and belief for this drug. To see their efforts being trampled like this is just painful. Far too many collaborations and so called expert lending or buying in Nigeria is based on the foundation of corruption. See Halliburton. It's so painful because at this time, this drug should be undergoing Clinical trials all around the world. Can you imagine how much revenue and jobs this alone could create in Nigeria? It's so painful. We are wasting our human resources, teaching our human resources how to be unproductive and lazy. When they get it right, the government does nothing to support. It's tiring. It's always about kickbacks. I know the clinical trial conducted in Nigeria was fraught with difficulties simply because people were too steeped in tradition or too corrupt. It's just so tiring.

Anonymous said...

...It's so sad to see it all ruined and corrupted since it is something that was supposed to help Sickle cell patients...


Omo Oba said...

hm, thanks for the info. Havent heard anything of it, would check it out.

Anonymous said...

Woow...this is a perfect research topic!
Thanks so much for bringing light to this issue.

Zach said...

Great post and great blog over all. I'm adding your site to both of my blogrolls. Check out my sites some time.


Anonymous said...

I sure hope that the BOD and the acting COO get investigated to find out if they broke the low along with the company. What a shame for those with SCD. Hoping the drug will get put in the hands of company that is willing to do what it takes to produce it and not pay themselves while allowing the license to expire.

p.allenjones said...

Information is power. Keep up the good work.
Also, see my blog related to living with SCD.

DanielSCDfound said...

I weep for this country,the oppressed children suffering and dying everyday.There is a way out, Foundations know the truth bcos of their greed.There is a cure,simple and cheap.If u are sincere or know some1 in dire need.Pls get in touch.

karla@ Sell Your Mobile said...

This kind of medication will definitely a great help to save more endangered lives all around the world!

sophia said...

a child of parents who both have the sickle cell trait has a 1 in 4 chance of being born wit the disease. There ar available tests in nigeria called 'prenatal diagnosis' that can tell u if an unborn child has the trait or the disease. Check the teaching hospitals.

i do not know of any government law dat does not permit marriage between such couples, what i do know is awareness is being made startin even from the homes,hospitals,friends,etc for every individual to know his/her blood group from birth and hopefully reduce marriage between such couples(in future) on the basis of ignorance. if a couple decide to marry, it should not be a 'blinded' venture.

We dont know who or what went wrong, it could be NIPRD or FG, we were not ther. We can only hope and pray that whatever the issue be sorted out quickly so that resarch/clinical trials can continue. and if found worthy, let the drug be available to all who need it ...fast.
God bless Nigeria.

cafedeluv said...

@Lotana seems your prayer had been answered as Yaradua is now 6ft under, unfortunately his death hasn't changed a thing. Nicosan has become a pipe dream. Its no more in production. The few you see in pharmaceutical stores are old prodduction batch produced in 2008 most nearing their estimated shelf life. They've totally the hope of a cure for Sickle Cell suffers.

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