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Shannen deserves better

Published: 
Wednesday, April 12, 2017

There needs to be a rational and unbiased review of the case of Shannen Luke, the desperately ill four-year-old whose request for assistance from the Children’s Life Fund (CLF) for a bone marrow transplant was turned down earlier this week.

It would be unfortunate if the case becomes so shrouded in politics that it would be difficult to make the kind of assessment of the Fund needed to avoid misunderstandings and address the shortcomings that have been highlighted through Shannen’s case.

Unfortunately, it is almost impossible to view the CLF outside of the realm of politics given its origins in August 2010 as one of the major initiatives of the People’s Partnership administration of then Prime Minister Kamla Persad-Bissessar.

Indeed much ado was made then of the importance of the CLF, a pet project of Mrs Persad-Bissessar which got some of its early funding through salary deductions from the then members of the PP Cabinet.

However, these facts should not be allowed to detract from the importance of having such a facility. To date, more than 100 children have had life-saving medical treatments abroad through the CLF.

Now, as it approaches its seventh year of operation, a review might be needed to ensure that it operates in a way that meets the needs of the children and families who need it the most. There should not be even the slightest hint of prejudice, political or otherwise, in how it is administered.

It is therefore unfortunate that Shannen’s case seemed to degenerate into political sparring between Health Minister Terrance Deyalsingh, under whose portfolio the CLF falls, and Opposition Senator Gerald Ramdeen, attorney for the Luke family.

The hue and cry from other political players has further clouded the issue, lessening the prospects for a rational discussion of the best way forward.

What is particularly significant here is how little is understood about the operations of the CLF.

Just at face value, Shannen seems to be an ideal candidate for funding and support. She suffers from a blood disorder known as Beta Thalassemia Major and depends on monthly blood transfusions and daily therapy to remove excess iron from her body.

She is a gravely ill little girl, and as she grows older she will be at increased risk of cardiac failure, liver disease, endocrine organ disease, osteoporosis and other major health challenges. Her only prospect for a better quality of life is a bone marrow transplant.

Shannen is scheduled to undergo the procedure, which is costing her family €158,000—approximately TT$1.25 million—at the Bambino Gesu Pediatric Hospital in Rome early next month.

However, she has been turned down by the Board of the Children’s Life Fund Authority (CLFA) because the panel of medical experts that assessed her case concluded that her illness is not life-threatening and also because the CLF does not reimburse people who have already spent money on surgery.

Public reactions since then, as well as statements made by the Luke family and Ramdeen, suggest that not enough is known about the criteria and procedures to be followed to get financial assistance via the CLF.

Therefore, the administrators of the CLF need to make a better effort at raising public awareness about that very rigorous process which involves a detailed upfront application, assessment and approval.

While Mr Deyalsingh insists that the case was treated with urgency, sensitivity and fairness that does not seem to be the public perception. Instead, it is being seen as PP versus PNM matter and it certainly does not help that a PP government introduced the CLF but it is now being administered by a PNM government.

Perhaps, instead of a government minister speaking on behalf of, or being seen as the face of the CLF, the public should see and hear from an independent, politically neutral CLFA in all matters related to the Fund and its disbursements.

It is unfortunate that Shannen’s case had to be played out in such a public way. She, like every other child in this country, deserves the best chance possible at quality health care and support.

However, since the health systems in this country, public and private, do not offer the range of interventions needed with some rare cases, there will always be the need for a CLF, or a facility like it.

The challenge is to ensure that it operates fairly and efficiently to save and improve the lives of the children who need it.