“Why Bother Doctor; she’s going to Die Anyway?”

The case of Mansa: A true story

We (clinicians) had just confirmed that the underlying cause of sweet 4 year old Mansa’s (not her real name unsettling fever and bone pain) was actually a type of childhood cancer of the blood called Leukemia. This was after about 6 weeks of hospital admission, blood transfusions, several near miss situations and an antibiotics bill in excess of GH₵3,000 (US$750). While Mansa battled to stay alive, her mother died in the same hospital from what dad informed me her doctors said was a kidney problem. The entire extended family spent fortunes and sold property to keep mum through dialysis (a procedure of ‘cleansing‘ the blood of impurities with machines in the event of kidney failure, function normally performed by the kidneys).

So, we broke the news of Mansa’s diagnosis including the foreseeable cost of treatment (GH₵20,000 for 3 years of treatment) to dad first and then, to the rest of the family (on dad’s request). One member of the family made this remark during the counseling session: “Cancer? In this child, then why bother doctor; she’s going to die anyway?” They missed their first clinic appointment after this; Mansa died at home less than a month later. She is now part of a growing statistic of childhood deaths from cancer in Ghana.

Stark reality

Childhood cancers are very rare but when it happens to your child, it is way too common. 80% of all children with cancer are in resource limited countries of Africa and South America. In the advanced, developed world, 85% of childhood cancers are curable! That is, 8 to 9 out of 10 kids diagnosed with cancer as in Mansa’s case, will be cured of their cancer and be alive 5 years or more after completing treatment.

Here in Ghana, the two biggest teaching hospitals attend to combined, about 400 (out of an expected 1000) kids with newly diagnosed cancer per year. About a third of these kids will die; another third will not complete their treatment (abandon treatment) and eventually die; and the final third will survive.

Childhood Cancer Statistics 1998-2013, KATH

Cost of Treatment of Burkitt Lymphoma and Leukemia, 2014, KATH

Let’s put this in context: in developed countries, 4 year old Mansa would have been diagnosed within 3 days of admission; she would most likely be alive now no matter the cost and we (clinicians) would not have discussed cost of treatment.

What does it take to cure a child of cancer?

About 50 years ago in these same advanced countries, there were a lot of ‘Mansas’. A diagnosis of blood cancer or leukemia meant certain death; it was a matter of how long. This is the situation in most cases in Ghana now. So, how did they do it, and continue to do it in the advanced countries?

• Research: National and international collaborations between various childhood cancer treatment centers to improve diagnostic and treatment strategies; including training and retraining of experts in the field of childhood cancer management
• Advocacy: Largely led by private individuals and non-governmental, non-for-profit organizations that run effective campaigns to create awareness and raise funds to support the treatment of childhood cancers. No single organization, government or private, can bear the huge financial burden of curing childhood cancers alone
• Health Infrastructure: Curing a child of cancer requires in addition to highly trained health personnel, effective healthcare systems (data systems; allied health systems; diagnostic systems) including infrastructure and constant updating of existing knowledge
• Political Will: Resources (human and financial) required to be invested in childhood cancer care needs commitment from various governments in sustainable, long term policies such as establishment of centres of excellence dedicated to childhood cancer care, specialists’ training and international collaborations at the level of governments

A graph of newly diagnosed childhood cancer cases seen in KATH, 1998 – 2013

I will end this short expose’ by asking readers to think about these (maybe controversial) questions:

• When will Ghana’s National Health Insurance Scheme recognize the need for supporting at least part of the cost of the treatment of even the commonest childhood cancer in Ghana?
• Tell me, will you rather your taxes of GH₵20,000 (US$5,000) be spent in curing (with all certainty) 20 kids with even the deadliest form of (cerebral) malaria; or in providing free school uniforms for 200 pupils, instead of using it to provide treatment for Mansa who has only a 30% (realistically, currently) chance of surviving in Ghana?
• Will another Mansa, born to parents of low socioeconomic class, be able to beat leukaemia in the next 50 years in Ghana?

Author:

Dr Lawrence Osei-Tutu (Paediatrician and Health Advocate; Official Doctor, BISA APP)

oseitutlaw@gmail.com; www.facebook.com/ChildhoodCancerAwarenessKATH