Childhood Cancer in Ghana reaching alarming levels

September is childhood cancer awareness month.

And on September 20, I had the opportunity to interview a parent, a child and a senior doctor at the Korle Bu Teaching Hospital to find out the current situation in Ghana with regard to the disease.

The child was diagnosed and successfully treated, from June to September, this year. Both parent and child were satisfied with the treatment they received, praising the doctors and nurses for their immense help.

However, they raised the issue of inadequate funding being their major problem during the course of treatment and advocated that something should be done about the situation. The other thing was having to travel from the Western Region to the capital in order to be diagnosed and treated.

The child had to hold on with her formal education until her treatment was over.

The medic in charge of the situation was Dr. Salifu, and described childhood cancer as any cancer occurring under the age of 15, with the common types in Ghana being  Butkitt lymphoma (on the jaw), Retinoblastoma (on the eye), Wilms tumor (kidney tumors of children), Leukemias (cancer of the white blood cells) and rhabdmyosarcomas (tumors growing in skeletal muscles).

The treatment options available are chemotherapy – with the common side effect being alopecia hair loss – radiotherapy, surgery or all the three depending on type and stage of cancer.

Though they may bear the same name, childhood cancers aren’t like adult cancers; in terms of treatment, the former is curable. In developed countries there is a 75% cure rate of childhood cancers, with some even fast approaching a 90% mark.

Ghana has major challenges with childhood cancer. There are just two childhood cancer treatment centers (Komfo Anokye Teaching Hospital, and a bigger one in Korle-Bu), therefore geoographical access to healthcare is a major problem.

There is no established way of funding childhood cancer treatment. When a child is registered under NHIS and is diagnosed with childhood cancer, the insurance scheme does not apply to that child anymore. As a country, our NHIS doesn’t cover childhood cancer drugs and such parents along with their children are left to their fate.

Some of the drugs are not readily available with few private companies willing to import the drugs to be used for treatment. There are issues of shortages as well even after importing because the quantity is inadequate.

The hostel at Korle-Bu for parents to pass the night while their children are on admission, even though beneficial, is woefully inadequate. Most parents trek from other regions to either Accra or Kumasi because there are no treatment centers in their places of origin. Some report too late, when virtually nothing but palliative care – managing their symptoms and giving them some comfort until they pass on – can be given.

As opposed to what happens here in Ghana, other developing countries have made provisions for accommodation, nutrition (feeding of children) and education so that they don’t get left behind in their various classes. They make provision for funding their diagnosis and entire treatment as well.  Due to this, their outcomes are very good with cure rates being high.

They are able to keep the child in the hospital for as long as it is needed for treatment to achieve a cure. Our input is necessary to achieve similar cure rates.

We cannot leave everything to patients if we want to achieve similar cure rates. And we also have to examine the way we manage childhood cancer cases if we want to achieve similar results.

Dr. Salifu also stated that there are 150-160 cases with confirmed diagnosis per year. These figures are those reported; there are people out there who have not been diagnosed and have died in communities.

Treatment becomes a challenge when they come in at late stages. At the time these laggards report their problems, only about 20% of them can be cured. Most of them can only be given palliative care. “This,” Dr. Salifu laments, “is unacceptable as a nation”.

Diagnosis must be made on time and appropriate treatment carried out and followed through till the end.

Because most parents can not afford costs, they are unable to complete treatment even if they start, and some abandon the process as soon as signs of improvement appear.

There are some sociocultural barriers and people have a problem disabusing their minds – some think that childhood cancer is some spiritual problem or curse that has befallen the family. For some people, as the child is receiving treatment, they are being told by either relatives or friends that this is not a hospital issue and that they need to look for external help.

On the brighter side, there are some support groups available –  a parents’ group called GHAPACC. They support each other in every way possible. They also teach some  vocational skills in the hospital for parents to be able to make a living while their ward receives treatment.

“Certain individuals and groups also come in sometimes to support with funds and motivation. Some include the International Central Gospel Church, Little Angels and Mmofra Africa. Their support is very much appreciated. We pray that as a nation we will all rise up and not leave it all in the hands of these benevolent individuals,” Dr. Salifu said.

She also said that continuous attempts are being made by some doctors, nurses and  medical students to create awareness on the disease. Some individuals and groups also go on health walks as a form of awareness creation. There is also involvement from the mass media.

Now more people are getting diagnosed and the main target is for the cases to be reported early.

Symptoms

One of the commonest cancers (retinoblastoma), which is also very treatable, presents itself as something whitish on the eye, a sudden deviation in the eye (squint/strabismus) or a protrusion (may not be an early sign but still necessary to report). If help is sought early enough, the eye, along with vision, can be saved.

Generally, other warning signs include persistent fever, unexplained weight loss, paleness, lumps, bleeding,easy bruising, tiredness, swellings all over the body, lumps on the body of on the genitals, complaints of aches and pains in the joints, bone or back, fractures without forceful activity, neurological signs (enlarging head, persistent headaches, early morning vomiting,change in behavior ,walking and difficulty attaining some milestones).

As a country, we are not all policy makers, but we are all stakeholders. And the stakes are high with regard to our children’s future and the amount of  attention given to childhood cancer.  We need to rise up as a society because the amount of attention given to the disease and treatment is inadequate.

“If the future generation of this country is denied health insurance just because they have developed cancer through no fault of theirs and they are left to their fate, I think it is unacceptable as a country and anywhere in the world. Cancer is an expensive diagnosis and we cannot leave it for families to manage on their own.

It is not enough on the part of policy makers to produce a document on the strategy to improve cancer treatment without any action plan. Implementation is very important. There is a document that has been produced as Ghana Cancer Control Strategy but we are not seeing any activity,” Dr. Salifu says.

Childhood cancers are curable and no child deserves to die of cancer.

Please do well to sign the petition to put the childhood cancer drugs on the NHIS by clicking on this link and kindly share afterwards.

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Eric’s Diary X : When we can’t fix what’s broken

 

I get into the shower routinely but today I stopped to wonder – “What if I stopped the running water in the bath tub and let my head sink for just 20 minutes?” No, maybe that’s too uncomfortable ; I will choke on the water and drown to death. “Death. Isn’t that what you want?” I was not sure of many things but at this moment I was sure that I just wanted to disappear but I couldn’t do that without dying.
There was this aura of sadness that I couldn’t explain. At first I thought it would go away just like anything else but it was like a tide – it kept rising and falling only that this time it did not subside like I thought it would.
Should I try out what I saw on television instead? Slitting my wrist is not such a bad idea at least Frank from House of Cards taught how to do it right by slitting vertically and not horizontally but there is pain in that one too.
Or should I go to the garage, switch on mum’s engine and allow the odorless carbon monoxide to take over me? It would be like I died in my sleep – peaceful. No one will even notice unless someone wants to use the car which is unlikely at this time. If you feel like you are not in the right place or this is not the right diary you are reading, well sorry to disappoint but it is. This is still Eric.
I used to be on top of my game despite the fact that I have ADHD but now I think life is getting the better of me coupled with the fact that I have been in some bad relationships that left me wrecked (that’s an issue for another day).
Bottom line is – I feel unworthy, unloved and uncared for. I feel like if I were to disappear nothing will change anyway and people would go on with their lives as usual. I feel that I am sometimes being a burden on society and some of the people around me when I can’t control myself due to my condition so I sometimes embarrass them.
No one notices that everyday I cry for help. When I say I need someone to talk to people just brush it aside or sometimes forget I even said anything. They say “hard guys” don’t cry but I believe everyone has their breaking point and this is mine. Maybe this is the end of the road for me because I have tried everything – from motivational songs, videos to speeches.
Those things are even beginning to sound alike and sometimes they are so plastic that I can even predict the next thing that’s going to be said.
Before I was diagnosed with depression, I was in denial at first. One of the few people I am privileged to call ‘friend’ would look into my eyes and ask me whether I was alright and I would look straight into hers and answer in the affirmative even though I was dying inside.
I did not tell her because I was afraid she might not relate to how I feel. I didn’t also want her to leave like my girlfriend (Edem) left when I disclosed that I felt I had started showing signs of depression.
One day when I felt no one was watching, I went behind the classroom to sit on the lover’s bench. I cried the whole time while making a quick google search on signs and symptoms of depression. It was like I had a checklist in my mind and I would uncheck everything mentally just to convince myself that there was nothing wrong win me.
As I was so engrossed in this exercise, I felt a warm tap on my shoulder. Our eyes met and she smiled at me. I pretended I wasn’t doing anything but the tears in my eyes gave me away. She said it was okay if I needed a moment and that I should cry if I need to.For the first time in my life, a girl had told me that expression my emotions as a boy in that manner was okay; it made me feel more comfortable with her automatically.
That was when she told me her story – she was raped at  ten while returning from an errand. She told me about how badly it had affected her and for about 3 years, she was silent and went into a state of repression (unconsciously living like it did not happen).
Till she had a trigger when her boyfriend tried to be intimate with her and all the events that night started to unfold. Her boyfriend did not understand what was going on at first but later got help for her by contacting a psychologist who took her through counseling.
She has been on antidepressants for a long time and she confessed that occasionally, she has some depressing episodes but they aren’t as terrible as the first.She told me that in her case, her boyfriend was both her trigger and her savior . Then she gave me a long hug and asked whether I wanted to talk about what was bothering me.
I have never poured my heart out to someone like that before ( I didn’t want to tell my mum because I felt she had too much to deal with). Cutting the long story short, this girl put me in contact with her psychologist and that was what saved me that day. I don’t know what I would have done to myself. Dialogue is very important to people who are depressed.
I applaud the people who are able to catch the early signs and offer a listening ear to anyone in that situation because sometimes that could be their saving grace. In such times, it is the little things like a hug, a smile or a word of encouragement that veers the person off that path of doom that’s lurking.
Even though no one can be certain that everything would be okay, there is one thing I am sure of ; having anxiety is one thing. Having depression is another. But having both at the same time is like a storm raving inside of you that can’t be kept still.
Eric’s diary is a series of fictional stories with the aim of address childhood diseases and disorders.
By : Naa Adzoa Adzeley Boi-Dsane