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Children’s Life Fund faces legal battle
Legal action is being taken to challenge what is being described as the “unlawful, irrational and unreasonable” decision of the Children’s Life Fund Authority (CLFA) to refuse funding to two children suffering with blood disorders - Shannen Luke and Terrance Chandoo.
Opposition Senator Wayne Sturge yesterday filed an application for judicial review of the “policy, interpretation and decisions” of the CLFA, based on its rejection of the application of funding for four-year-old Luke and five-year-old Chandoo earlier this year. Each child’s surgery cost $1.2 million.
Opposition Leader Kamla Persad-Bissessar and senator Gerald Ramdeen, with instructing attorney Sean Sobers, are the legal team leading the action.
According to the application filed, the decision to refuse funding to Luke and Chandoo is contrary to the provisions of the Children’s Life Fund Act.
The Children’s Life Fund is a charitable fund established by the government under Persad-Bissessar in November 2010 by Act of Parliament - Act No. 12 of 2010. The CLFA was the body bestowed with the responsibility to operate, manage and administer the Children’s Life Fund.
According to the CLFA’s website, the authority “ensures that all eligible applicants to the fund are carefully considered by a team of highly qualified specialist doctors and medical social workers to ensure that the ‘Best Care Plan’ is determined and carefully executed. The CLFA’s first priority is the well-being of the child and his/her family.”
In April, the families of Luke and Chandoo sought to access that funding. Chandoo, who was born on June 30, 2012, was diagnosed with a blood disorder known as Beta Thalassemia Major when he was eight months old. Luke, who was born on April 11, 2013, was diagnosed with the same disorder when she was nine months.
The only cure for the disorder is hematopoietic cell transfusion, which is not available in Trinidad and Tobago. Both children’s parents identified the Bambino Gesu Paediatric Hospital in Rome, Italy, as a centre for a haploidentical bone marrow transplant surgery at approximately TT$1.2 million, which does not include the related expenses associated with the surgery and after care.
On April 4, Luke’s parents made an application to the fund for help, while Chandoo’s parents did the same on April 6. Both applications were rejected.
According to the CLF, a clinical assessment determined that the children’s medical condition was “not life threatening” as required by Section 19 (e) of the Act, the judicial review document stated. In addition to this, the parents had already paid the hospital for the surgeries in early May and the fund “does not allow for reimbursement”.
Sturge’s application is arguing that the CLF’s decision, “if left unchallenged will directly affect the ability of many persons to access funding from the Children’s Life Fund and this may affect the ability of the board to properly and lawfully discharge its statutory power.”
On April 24, a pre-action protocol letter was sent to CLFA chairman Dr Aritza Fernandes. Affidavits by Sturge, Dr Ramesh Mathura and Chandoo’s mother Alicia Chandoo were also filed at the San Fernando High Court.
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