Parliamentary Secretary Natalie Chaitan Maharaj pilots the Children's Life Fund Amendment Bill in the Upper house which promises a wide scope of conditions, a higher ceiling of funding and more power to the Health Minister
00:00As its first matter of business, the Upper House debates the Children's Life Fund Amendment Bill.
00:06One main tenet is the amendment of the bill to now include life-limiting conditions, as opposed to previously life-threatening.
00:15It covers now 26 diagnoses in the categories of cardiology, pediatric oncology, pediatric surgery, nephrology, hematology and endocrinology.
00:31It represents life-limiting illnesses that are most commonly seen in our region.
00:38It was piloted not by the Health Minister, but by the Parliamentary Secretary in the Ministry of the People and Social Development, Dr. Natalie Chaitan Maharaj,
00:49who cited the past administration's role, she said, in the deaths of six children at the Port of Spain General Hospital.
00:57Let us be clear. This was not an issue of clinical incompetence. Our doctors and nurses do their best.
01:04This was the direct result of the then-government's infrastructural neglect, administrative inertia and political oversight.
01:14It is the children, again, who paid the price.
01:18The minister now has the power to, with the board's recommendation in exceptional circumstances, increase the funding from $1 million to $1.5 million.
01:28To the layperson, this may seem extravagant. But to anyone who has ever had to price a bone marrow transplant or gene therapy for a rare disorder or specialty pediatric oncology care,
01:43cancer treatment for their child, this increase is not just reasonable, it is essential.
01:49It reflects both inflation and the escalating costs of emerging and advanced medical treatments.
01:58Once passed, foreign specialists can now be brought to TNT to also build capacity and end what she calls the brain drain.
02:06Not only is this more cost-effective, less physically traumatic for the sick child, and less emotionally traumatic for families,
02:16it also creates knowledge exchange.
02:20Our own doctors can train under these visiting specialists, gaining subspecialty skills right here at home.
02:27Chaitan Maharaj said the most powerful amendment may be giving the health minister the power to intervene and overturn the board's decision when application is refused.
02:38No institution is perfect, and mistakes can be made.
02:43However, we cannot afford to make mistakes when the life of a child is at stake.
02:49This recourse to the minister is analogous to an automatic appeal, where the minister is automatically informed of a refusal,
03:02and he will then take the appropriate advice when he reviews the refusal.
03:07She calls it a clinical safeguard, and one where the minister can get advice from his technical team.
03:13The parliamentary secretary lamented the procedural delays, which in the past resulted in the deaths of children.
03:21Real-world comparisons, she says, show a two-week turnaround of emergency cases and full processing of four to six weeks.
03:30Compare that with the two- to four-month span in TNT.
03:33All these amendments, every single one, seek to ensure that no parent in Trinidad and Tobago must face that kind of unimaginable pain
03:45because of a fund that was meant to help, couldn't or wouldn't.
03:52Mr. President, too late, too late should never again be the cry of a mother.
03:58Since 2010, the fund, she said, supported 300 cases, with 20 applications declined during one administration
04:07for not reaching the life-threatening threshold, and 80 in total rejected to date due to constraints with the legislation.
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