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Wednesday, July 23, 2025

Senators clash over delays, deaths in Children’s Life Fund

by

KEVON FELMINE
29 days ago
20250624

KEVON FELMINE

Se­nior Re­porter

kevon.felmine@guardian.co.tt

While the Gov­ern­ment crit­i­cised the for­mer Peo­ple’s Na­tion­al Move­ment (PNM) ad­min­is­tra­tion for fail­ing to im­prove the Chil­dren’s Life Fund Au­thor­i­ty (CLFA), Op­po­si­tion Sen­a­tor Dr Amery Browne said many of the 80 re­ject­ed ap­pli­ca­tions were due to bleak prog­noses.

Mak­ing her maid­en con­tri­bu­tion in the Sen­ate yes­ter­day, Min­istry of the Peo­ple and So­cial De­vel­op­ment’s Par­lia­men­tary Sec­re­tary, Dr Na­tal­ie Chai­tan-Ma­haraj, re­vealed that sev­er­al chil­dren died while await­ing ap­provals un­der the fund. She cit­ed the 2022 case of 14-year-old Tris­tan Ram­lochan, who suc­cumbed to acute lym­phoblas­tic leukaemia while wait­ing for fund­ing and trav­el arrange­ments. De­lays in his flight meant he be­came too ill to trav­el. An­oth­er child, Ba­by Mir­a­cle Cross, died in March 2016 while funds were still be­ing processed.

Chai­tan-Ma­haraj not­ed that while Cana­da’s Chil­dren’s Hos­pi­tal Foun­da­tion and the UK’s NHS Rare Dis­ease Fund typ­i­cal­ly take be­tween sev­en and 14 days to process emer­gency ap­provals, the CLFA takes be­tween two and four months.

“Nev­er again, Mr Pres­i­dent, must a child die be­cause he or she was de­nied life-sav­ing med­ical at­ten­tion or must suf­fer be­cause of the in­abil­i­ty to ac­cess life-im­prov­ing med­ical treat­ment,” Chai­tan-Ma­haraj said.

The CLFA was in­tro­duced in 2010 by the Peo­ple’s Part­ner­ship gov­ern­ment to sup­port chil­dren with life-threat­en­ing med­ical con­di­tions, par­tic­u­lar­ly those for whom treat­ment was un­avail­able lo­cal­ly or fi­nan­cial­ly out of reach. Be­tween 2010 and 2025, the fund re­ceived 472 ap­pli­ca­tions.

While pi­lot­ing the Chil­dren’s Life Fund (Amend­ment) Bill, 2025, Chai­tan-Ma­haraj said the pro­posed changes aim to ex­tend el­i­gi­bil­i­ty to chil­dren with life-lim­it­ing con­di­tions, not just life-threat­en­ing ones.

She ref­er­enced the case of five-year-old Haleema Mo­hammed, who was de­nied as­sis­tance be­cause her con­di­tion, be­ta-tha­lassemia ma­jor, was not con­sid­ered im­me­di­ate­ly life-threat­en­ing in 2018.

Chai­tan-Ma­haraj ar­gued that while not im­me­di­ate­ly fa­tal, it se­vere­ly di­min­ished her qual­i­ty of life.

She ac­cused the PNM of ne­glect­ing the fund over the past nine and a half years.

]In re­sponse, Sen­a­tor Browne said that some ap­pli­ca­tions had been re­ject­ed be­cause the con­di­tions were not life-threat­en­ing, and in cer­tain cas­es, the chil­dren had a poor prog­no­sis. He ex­plained that de­ci­sions had to con­sid­er the like­li­hood of sur­vival and suc­cess of treat­ment.

He added that these were dif­fi­cult de­ter­mi­na­tions en­trust­ed to the CLFA and ac­knowl­edged that part of be­ing a par­ent was be­liev­ing one’s child would sur­vive.

Browne crit­i­cised the ab­sence of de­mo­graph­ic da­ta and epi­demi­o­log­i­cal in­sight in bring­ing the pro­posed amend­ments, ques­tion­ing how many chil­dren would ac­tu­al­ly ben­e­fit and what bud­getary pro­vi­sions would be re­quired.

He fur­ther rec­om­mend­ed com­pen­sat­ing lo­cal pri­vate spe­cial­ists for treat­ments cur­rent­ly sought abroad and ques­tioned the Bill’s pro­vi­sion al­low­ing the Min­is­ter of Health to as­sume cer­tain pow­ers from the CLFA. In emer­gency sit­u­a­tions, he said, au­thor­i­ty should in­stead be grant­ed to the CLFA chair­man.

In­de­pen­dent Sen­a­tor Dr De­sirée Mur­ray, al­so de­liv­er­ing her maid­en speech, said the fund’s suc­cess should not be mea­sured sole­ly by the num­ber of chil­dren sent abroad, but by the qual­i­ty of life they en­joy up­on re­turn­ing—and ide­al­ly, in re­duc­ing the need to leave at all.

She em­pha­sised that the CLFA’s evo­lu­tion should be guid­ed by sus­tain­abil­i­ty, eq­ui­ty, and in­vest­ment in lo­cal health­care.

She called for a redi­rec­tion of pri­or­i­ties, ar­gu­ing that for­eign med­ical ex­pens­es should be matched—or sur­passed—by in­vest­ment in do­mes­tic health­care ca­pac­i­ty.


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