A helping hand

Haleema, who suffers from a blood condition, had been rejected by the administrators of the Children’s Life Fund. The officials questioned the basis for the diagnosis of the child as well as her eligibility, stating beta thalassemia major was not life-threatening.

In this space a few days ago, we called for better systems to be put in place to screen applications for assistance from the Children’s Life Fund. In Haleema’s case, the matter went all the way to the board of management of the fund where it was given careful consideration.

If it was clear the child could not qualify under the law because of the nature of her condition, the issue should never have taken so long to be resolved.

The case also raised disturbing claims – reportedly made by a High Court judge presiding over a lawsuit filed on behalf of Haleema’s family – who accused the fund administrators’ of acting callously.

They have not responded.

Be that as it may, the question that arises from this case relates to matters beyond the remit of the board of management.

As a matter of policy, the State should determine whether only the most critical cases should merit assistance.

The aim of the Children’s Life Fund is to provide funding in cases where a child faces death, where treatment is not available locally and where affected families are unable to pursue the necessary treatment abroad due to financial limitations.

Often, serious conditions require treatment in order to preserve the patient’s quality or life or prevent more serious conditions from developing. Why should children suffering from these diseases be denied simply because they are not yet at death’s door? It is for Parliament to determine the scope of the State aid provided in these cases. Cases like Haleema’s demonstrate the need for a review of the Children Life Fund law.

There is also a need to bolster medical expertise locally. If the State has trouble doing the latter, then it definitely must do the former.

And what of the Couva Children’s Hospital? Could this facility play a role in handling cases, whether serious or life-threatening? It is wonderful to see how many private entities have come forward to donate funds to Haleema’s family to facilitate her treatment.

It is not often appreciated how much big business contributes to society. This ranges from large multi-national firms such as BP to small, family businesses that operate within local communities.

There are also countless NGOs to which citizens, daily, turn in the face of appalling gaps within the public sector.

At a time when the State is strapped for resources, it is particularly heartening to know that the private sector can be counted on to offer help when help is needed.

This does not absolve the State of its duty to fulfill the social contract.

Rather, it is complementary to it. Civil society has a role to play in helping our State achieve its fullest goals.

The various companies that have come together to assist Haleema show us the potential for something more long-term.

Pending any review by Parliament of the current arrangements, perhaps the time has come for a charitable organisation to be formed to cover cases that do not fall under the Children’s Life Fund? For now, we congratulate those who have lent a helping hand to Haleema and wish her all the best.