Stella Dimoko Korkus.com: Newborn Screening Needed For Sickle Cell Anaemia in Nigeria

Advertisement

Advertisement - Mobile In-Article

Monday, 20 March 2017

Newborn Screening Needed For Sickle Cell Anaemia in Nigeria



• Nigeria has the highest rate of sickle cell anemia in the world

• Nigerian Bujola Bolarinwa suggests show on potential cure for Al Jazeera; appears via Skype

• Bone marrow transplant cure exists but not available or affordable for most Nigerians

• Experimental gene therapy looks promising but unlikely to be available or affordable for most Nigerians in the near future

• Even drugs like Hydroxyurea too expensive for many Nigerians

• Newborn screening needed in Nigeria


“Nigeria has the highest rate of sickle cell in the world,” Bujola Bolarinwa, president of the Sickle Cell Aid Foundation in Abuja, told Al Jazeera last week. “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.”

Bolarinwa was appearing on The Stream on Al Jazeera, after suggesting 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. 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 The Stream’s host, Femi Oke, a former Nigerian media personality of the year. “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.”


On The Stream, 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’d 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 reserved for the most severe cases at this early trial phase.


Kanter added, “It is right now not available for mass production and it is expensive… My goal one day somehow is that, when you know you’re going to have a baby with sickle cell disease, we can take the cord blood from that baby and insert the gene into the cord blood and give that doctored cord blood back before the first year of life. But we’re not there yet.”


Kanter suggested the focus in Nigeria for now should rather be to have newborn screenings. “Because the most important thing we can do first is start patients on penicillin. Penicillin is not expensive; the problem is diagnosing kids right away at birth and getting them the help they need.”


There is already a cure for sickle cell disease: bone marrow transplants. But even for those Nigerians who find a matching donor, this remains out of reach due to the costs involved, according to Bolarinwa.


“Things like stem cell transplants are completely out of it because you have to travel to India and other countries for them to do it; it’s not really available here,” she says. “A lot of the therapies are great; they’re good news. But if the people who need it the most can’t afford it, it really seems like just another far-fetched thing.”


She says that many Nigerians can’t even afford Hydroxyurea, a drug given to most children who live with sickle cell in the USA. “I take it and it’s really improved my life but a lot of people in Nigeria can’t afford it,” she says.


Kanter admitted pricing was “a huge problem. Because where are most babies born with sickle cell disease? In Sub-Saharan Africa and in Nigeria.”


Among other topics, The Stream also discussed the misconception that sickle cell anemia is a black disease; the reasons for the lack of awareness around it, even within the medical community; the stigmas associated with the disease; and the odds of having a child with sickle cell if you carry the trait.

Watch and embed the full episode at https://youtu.be/GkMdUc0NNnw.


For more information, visit http://stream.aljazeera.com/story/201703141451-0025393.


About The Stream

The Stream is a social media community with its own daily TV show on Al Jazeera English. For more information, visit http://stream.aljazeera.com/ or follow @ajstream on social media.


14 comments:

Yori Yori Princess Loveme Jeje said...

Very good

Miss Ess said...

Chai! Thank you ma'am for this info. Very detailed.

Anonymous said...

Good initiative but why are we still the highest?because we choose to play dumb.some women who are ss would lie to impending husbands that they are aa so as to secure the title Mrs" but is it worth it,some say i love my girl/man so i dont care.let it come is it worth it?having kids youd be attached to then later watch them suffer.i had a neighbor that watched four kids of hers die due to ss,only one is alive today.why would you do dat to urself and another human being.u are no different from a woman dat gives birth and throws the child away"why not prevent it,if u love urselfs so much u must marry,then try and not have kids,just enjoy ur love life and adopt a child and take as your own.ive given my 2cents

Single Mom said...

Very good development, I am always happy to see such news because I know what I am passing through with my child,,no money to support my child's illness job no I no see do, one day when things get better I will open a foundation to assist parents going through same bitter experience as me.



Long live SDK

Anonymous said...

Why won't nigeria be the highest when they choose selfish love over common sense?

Anonymous said...

Sickle Cell Genetic make up is common in the black race. Nigeria is the most populous black nation. Nigeria is under developed with education still lacking in many regions. Many people get married or have children without even knowing that they both carry recesssant sickle cell. Sickle cell will always be most common in Nigeria except 1) it becomes developed 2) it stops becoming the most populous black nation.

Anonymous said...

Bone marrow has been on for a while in the UK but I think they need to let people know the risks as well.
For a female child; it means she will not be able to have children in life and bone marrow is only for children within a certain age.
I also think it might not be fair on the other sibling who will be the donor.
I will say prevention is better than cure when it comes to sickle anaemia, let couples have their genotype tested before marriage and if you decide to marry if you are both carriers then please have a CVS test done to ensure the baby isn't sickling.
Its very easy to say you will pass through it but I will say its not fair on the innocent child, if you haven't lived or seen someone going through crisis then you wouldn't understand.
My husband is over 40 and has SCD but we thank God we live in the UK and we've been able to manage it; from Hydroxyurea to blood exchange every 6 weeks which has been very good.
I sincerely wish everyone well but please let's put our children into consideration.

Anonymous said...

Cure for AC nko? SS junior

Anonymous said...

When we don't marry u call us gwegwegwe plZzs. Enough, I lived it am 27 waiting to cross 31, I will marry this yr to an AA and have one child. If is Ac or As my luck. Stop judging us abeg

Anonymous said...

@anonymous 15.12. AC is not a problem it is like AS. Do not marry AS, AC, SS or SC. Thank me later and try to read up stuff on google before commenting foolishly.

Anonymous said...

I have a friend who got married since 2010, they both SS I begged him not to marry d lady,I began her enemy because of that. Till now they ve no children cos of fear. Den d gal was using faith dat she is Christ embassy member. No mata how u love someone pls don't use dis play cos u will regret it

Orisabunmi said...

This is great information,we are silent about the sickle Cell disease, I lost a dear sister to the SCD, it was an eye opener. And the churche s should please stop being encouraging people to marry with faith, it's stupidity.

Anonymous said...

See sickle cell awareness campaign. An AS and AA can have a sickle cell child if the AA person carries the thalassemia gene. So an AS with the thalassemia gene is actually a sickler, educate people right. https://www.naijafund.com/campaign/sickle-cell-awareness/

Anonymous said...

Must they have Children?

Related Posts Plugin for WordPress, Blogger...