Haleema’s case

WE SYMPATHISE with the plight of the family of five-year-old Haleema Mohammed. We hope her family will receive support and assistance as they seek to have Haleema treated for a blood disorder which, while not immediately life-threatening, is still serious.

Haleema’s case has provoked debate over the workings of the Children’s Life Fund. The fund has rejected an application lodged by her family for her to seek treatment at the Fortis Memorial Research Institute in Gurgaon, India, at a cost of $400,000.

That hospital boasts of being the “Mecca of Healthcare” for Asia Pacific and beyond.

According to the fund administrators, Haleema’s condition is not life-threatening and, therefore, she does not qualify for assistance.

It is unfortunate that Haleema’s application – which was subject to “careful consideration” by the board of management – got so far without anyone realising that she was ineligible for funding. There needs to be a more efficient screening process when it comes to these matters. In healthcare, time is of the essence and parents can end up spending a great deal of time and attention lodging an application – and even filing court action – when they could otherwise be engaged.

But more than that, the administrators of the fund have serious questions to answer given the concerns expressed by High Court judge, Justice Devendra Rampersad. According to a Newsday report earlier this week, the judge, in hearing an application filed by lawyers representing the family, expressed concern over what he described as a lack of compassion in meeting and treating with the funding of life-threatening illnesses involving children.

This is a serious charge which merits a public response. To date, none has been forthcoming.

The deeper issues here, however, are matters which are entirely out of the board of management’s hands. That is: should the fund be limited to cases which involve life-threatening illnesses? Who determines what is a life-threatening illness? And should the State not adopt a far more liberal approach to facilitating the specialist medical care that it has failed to make available locally?

Parliament should consider whether Section 4 and Section 19 of the fund’s governing statute are in need of reform. There are clear moral reasons why the State should foot the bill in cases where the required medical expertise is not available locally and where the family involved does not have the means to access foreign treatment.

Furthermore, there needs to be clarity on how the administrators of the fund determine individual cases. Clear, detailed reasoning should always be provided when handing down determinations. And the experts consulted should also be identified.

It is unfortunate that a decision in this case appears to have come after legal proceedings. This is a course we do not look upon favourably. Critical healthcare matters should not be litigated in court. The Children’s Life Fund authority must do a better job of making determinations.

In the meanwhile, there may be a need to improve communications with the public when it comes to what qualifies for funding and what does not.

If the State is unable to assist, perhaps members of the public might. Anyone wishing to assist the family can make donations to: First Citizens Bank Penal A/C# 2430155 or contact them at 331-4672, 710-1137 or 270-0707.

Haleema’s case – life threatening or not – underlines the need for greater compassion on the part of the State and also our community.