Sickle cell: The Canada model and how Nigeria can get it right

… Psycho-social activities inside ‘Camp Chizi’ in PH

Nigeria is suspected to fly high in recording incidence of sickle cell disease (SCD) but ranks low or zero in care management and psychosocial support. Now, an expert has found the difference between Canada system of managing it and Nigeria’s.

Mission to Canada:

In 2021 a forward-looking and in fact an ambitious young female doctor travelled to Canada to do a three-year training course in sickle cell disease management. Upon return in 2024, she said she realised the disparity in care between what is obtainable in Canada and what happens in Nigeria for sickle cell disease care. The doctor, Chioma Okechukwu, resolved to carry out a number of missions one of which is to step down exactly what they do there in Canada and other advanced countries that is different from what is done in Nigeria.

One of the things they do is that every summer, they take those living with sickle cell out to camp, outside of the clinical setting and try to address all the issues that medications cannot directly address; all the psychosocial issues like depression, suicide ideation, anxiety and all the things that they pass through, because of the pain they feel every other day.

Welcome to ‘Camp Chizi’, an annual camp for Sickle Cell Disease (SCD) patients where non-clinical but critical attention is lavished on PLSC based on research. The name was derived from the life one model, Chizi, lived, which turned him into a PLWSC warrior who lived up to about 37 years.

The hero was a medical doctor but one key thing about him, according to Okechukwu, he lived everyday like it was his last. It was said that even at his funeral the family wasn’t sad or crying, they were more like rejoicing for the life they said he lived, because he gave his best to every day that he had. Okechukwu thus felt like it was good to tag the scheme with the name of a patient-warrior to let people know that it’s not about her (Doctor Chioma Okechukwu), it’s about these warriors.

‘Camp Chizi’ will be held annually and may be mounted in more cities because of surging interest already, she said. It is being done exactly like in Canada. The convener had to pull resources from friends and relations who share her passion and those that feel the pain from relations who may be patients, too.

What is uppermost in the mind is that most sickle cell patients are already financially constrained because they spend so much in buying drugs and much more in caring for themselves in general because they have so many complications that require intensive financial support.

‘Camp Chizi’ is being organized without financial burden to the patients, thus sponsorship drive across board. On this note, more than 80% of the children in the camp at Dietam International School in Trans-Amadi Gardens Estate on Peter Odili Road in the Garden City were on free tickets. It was originally meant to be for those below the age of nine but fierce demand forced the organisers to make it an open camp.

So, for the three days duration of ‘Camp Chizi’, the teaching focused on mental health as well as other issues such as drug adherence, explaining in friendly way the medications they usually get.

The convener stated in an interview with BusinessDay thus: “Initially, because I’m a Paediatrician, I wanted to take people from nine to 20 years but by the time I announced this, I had a 49-year-old and 58-year-old living with the disease calling to be allowed to attend. So, with that pressure I opened it up; and some are attending as volunteers. This has opened another vista by making the older ones to serve as mentors to the younger ones. This created peer-review benefits.”

The younger ones now know that they don’t have to live everyday like people without hope, without a future. “So, out of the older people, we have people that are specialists, consultants; we have medical doctors. Seeing that alone is enough inspiration. The key part of this camp is the interaction, the peer-to-peer mentorship, alliance, the community support that they will get, the friendship they made here, the inspiration from other people, their age mates that are going through what they are going through, and they are strengthened. I can already see it in their eyes. So, this is the effect I saw in children in those camps in Canada and I’m seeing the same thing already. We’ve had people open up, shed tears. There’s a 22-year-old girl that is completely abandoned by her family. She came to camp with just a nylon bag. She owns nothing. We gave her camp surprise to even get by everyday, and when we were sharing in one of the mental health sessions and advised patients to try to block off any negative voices, shut out anybody that is telling you that you are not good enough. She then asked a question: how do you block off voices that are your family members; does that mean you should stop talking to your mother, your father or anything? She said she has received poor or zero support from her family. In fact, that they have completely abandoned her.

“Sometimes you want to blame the families, but when you think about it, some of them are financially impoverished because of caring for these people and sometimes they are left with no choice than to abandon the patient.”

BusinessDay gathered that Nigerian families are bear secret burden of over N250bn per month on medical treatment of PLWSC. This is derived from a minimum of N25,000 needed for medicare of one patient.

According to Okechukwu, the cost gets outrageously bigger when cost of complications and special treatments get into the calculations. It gets to about N500,000 for certain treatments for a PLWSC.

Nigeria has been declared the epicentre pf cickle cell disease where about 3% of the populace (220m) is down with the sickness while those with traces are up to 25%, with 150,000 newborns affected annually.

Many countries including Canada have devised strategic ways of curtailing or reducing the spread and pains of the disease but Nigeria is said to be looking at the situation without any drastic actions.

For that reason, Okechukwu has set up this remedial mechanism.

So, apart from organising this kind of camp for the PLWSC/warriors, the convener and her team had intense burden to speak to the family members when they come to pick up their children. “We want to sit them down and tell them, look, you have to do more. We the doctors and medical people can infuse, we can help to build their confidence but they are all the time with you; you have to do more. If you need to get more education about how to care for them do, if you need to get more pay for psychosocial support for yourself on how to care for them, then do it, but you can’t just leave these children to struggle on their own because what will kill them faster is the psychosocial complications of the diseases more than even the pain they feel.

“I’ve had a lot of friends that had sickle cell disease and I have seen the difference in those who have maximum family support and those who don’t. The ones that don’t, don’t do well, and before you know it, you’ll hear that they succumbed to the illness, but those with maximum family support, they go on and they do very well. So, psycho-social support is key and that’s what we are trying to do with ‘Camp Chizi’. We are hoping to continue to do this every year and do it bigger. I have someone coming in from Ondo State, I have someone coming in from Delta, and from Lagos. So, if I could do this in Port Harcourt, Abuja, and Lagos, people won’t have to travel this far, and this people who are travelling these distances in pains or hours are warriors. We do not own a hospital and there is no financial gain for this. We even put in our own.”

Clinical differences, too: why patients die more in Nigeria

The medical expert admitted that apart from psycho-social differences, there are also major differences in clinical care. “First of all, in Canada, there is new born screening scheme. So, they are able to detect this disease early and begin to tackle it. In Nigeria, the story is not the same. Most children get diagnosed even at 10 years, very late when some complications have already set in. I’ve had children in Braithewaite Memorial Hospital (now teaching hospital) that come in with a stroke, and it’s at that point that they are first making a diagnosis of sickle cell disease. That shouldn’t be the case. So, in Canada, because the government takes responsibility of healthcare and pays for everything, they get newborn screening done.

“Right now, where I work in Nigeria, we are working on getting newborn screening as part of conventional healthcare right now. It is a state project because I have a chief medical director who also contributed to ‘Camp Chizi’ who is very keen about care of children with sickle cell disease. So, he has pioneered the beginning of new born screenings in hospitals in the South-South Nigeria and we are about to start it, but the burden will be borne by the parents. We feel that newborn screening and early diagnosis of sickle cell disease, we are better able to start the management of this children.”

So, in Canada, she revealed, once newborn screening is done, the child is referred to the haematologist and the child starts certain antibiotics that prevent severe infection. At nine months they start a disease modifying therapy called hydroxiurea which is like the game-changer in sickle cell disease. This is because it is able to prevent crisis, it’s able to prevent major complications, but for us here we start these medications pretty late when the child has already come down with so many things. More especially, because the medications are not started on time, the children don’t grow very well. In the camp, you will clearly know that there’s something not so right with them because they are way smaller than their peers and all these things contribute to the psychosocial complications that they have.

“In Canada, most of the patients I saw were taller than me. Their problem is even overweight because all these medications that they started on time have improved their cells. So, they grow well and you’ll never know they have sickle cell disease.”

She said family plus psychosocial support is also key but these are things that she and others are gradually stepping in to make sure that they step down all these things that they have seen were possible to care for sickle cell disease children in Nigeria.

Poor and unreliable tests in Nigeria:

What could make Nigeria the epicentre of sickle cell disease, she was asked. Okechukwu said the lab tests in Nigeria were very unreliable. She suggested that couples about to marry should conduct the genotype test in more than three good labs.

She said it is medically and scientifically impossible for parents without the traces to get a child that is down with sickle cell.

She said couples that went to do tests are often failed by the system. At last, they still get children with the sickness. “So, beware of roadside labs”.

The Nigeria case:
She reaffirmed that sickle cell disease is largely a Nigerian problem because Nigeria is the epi centre worldwide. “So, we have the highest burden. I can tell you that up to a third of children with sickle cell disease worldwide are in Nigeria or are Nigerians. I was in Canada with sickle cell children but all the names of the people in Canada were Nigerian names. So, when we see each other, we know that we are just Nigerians in different countries. So, it’s a Nigerian problem. Most of these sponsors can connect with the sickness. I have people that paid for 19 persons. I have mental health facilitators that came here to do this at no cost because they know that this is a Nigerian problem and it has affected all of us in one way or the other.”

Benita Patrick: beneficiary: This has brought me out of the bubble;

A beneficiary, Benita Patrick, in an interview, said by attending ‘Camp Chizi’, she has been assisted to come out of the bubble. “I used to stay away from people, I didn’t know how to make friends because of my experience in secondary school where my fellow classmates wouldn’t want to have anything to do with me to avoid getting them into trouble. This affected me. Now, I am a year two student in the university. Now, I see things in a different perspective. It has opened my eyes to know that it’s not only me that is going through it. I use to think that my own was the worst, but there are other people out there, other warriors going through worse things than what I’m going through. Some can’t even breathe, now on life support. I can breathe and I can walk now after my one-year experience of inability to walk. So, I think the camp is helping me.”

Alexander Comfort, clinical mental health counsellor:

In an interview after her presentation at the camp, Alex Comfort said: “I talked in the camp about mental health and Sickle Cell Disorder. It is no longer news that any individual battling with or living with SCD needs care for their mind as much as they actually need care or healing for their body. In the course of the conversation in my session, I realised that a lot of these children are seriously struggling with mental health conditions. They saw an opportunity to share these things. They talked about suicide, depression, low self-esteem. Yes, it’s not far from the truth.

“So, medical professional can now take into cognizance what these children are going through. My message is, if you are a sickle cell warrior out there, it is important for you to note that you teach people how to treat you because they wouldn’t really know all of what it takes to care for you as an individual.
Nobody will actually talk about it for you, and so take care of yourself, keep tracks of your emotions, because emotions are meant to be expressed and not bottled up. I’m encouraging them to speak up.”

Uche Finebone: a polymath cyber security expert;

Uche Finebone, who is also into web development and anything media, said what inspired him to volunteer at ‘Camp Chizi’ was that most people regard him like a doctor though he is only into health technology. “But I got inspired when I saw some kids with sickle cell and I love kids, I don’t like seeing them sick. So, I came here to support ‘Camp Chizi’ kids too and also empower, and inspire children. It is also to aid people living with sickle cell live a good life instead of being depressed.”

He also joined in the call for intending couples to first run genotype tests in not less than three laboratories. He said SCD is more prevalent in Nigeria because of high level of negligent lifestyle.

He regretted that most persons do not care for their status. Some use faith to marry while others think that they should marry first and worry about genotype later.

His advice however is for couples to consider that it is about the life of the unborn child; the pains and suffering that child would go through because of decisions made by others.