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.
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.