The death of a teenager while he was awaiting treatment abroad has raised questions about the operations of the Children’s Life Fund (CLF), the facility which provides funding and support for children with life-threatening medical conditions.
Triston Ramlochan, 14, who had acute lymphoblastic leukaemia, died on April 14. He was scheduled to be flown to the Indraprastha Apollo Hospital in India for treatment but his first flight was cancelled and while arrangements were being made for a second flight, he became too critically ill to travel.
In response to concerns raised about the case, the Ministry of Health said in a statement on Friday that all efforts had been made by the Children’s Life Fund Authority (CLFA) board and staff to provide support to Ramlochan and his family in the shortest possible time.
“Upon receipt of all the required final documents from the family of the patient and the clinical teams, and the subsequent completion of the requisite internal process, approval was granted by the CLFA board to provide funding to support the required travel, as well as some of the medical treatment to be done at the Indraprastha Apollo Hospital, in India.
“Unfortunately, CLF was advised by the travel agency of the cancellation of the first flight that was scheduled to take Ramlochan to India for treatment. This cancellation was out of the control of the Authority. The unfortunate clinical deterioration of the patient (as reported by the doctor in charge of his case) prevented the family from making the journey at a later time. Triston Ramlochan simply became too ill to travel.”
Acute lymphocytic leukemia, a type of cancer of the blood and bone marrow, is the most common type of cancer in children.
Patients are extremely vulnerable to life-threatening infections and are also prone to uncontrolled and serious bleeding.
Ramlochan’s family, including his mother Natalie Joseph, had made valiant efforts to raise funds for the teen’s treatment abroad and turned to the CLF for help to raise the estimated US$90,000 to US$100,000
Ramlochan needed immunotherapy followed by a stem-cell transplant or cellular therapy to survive—treatments that are not available in T&T.
In January, he had been accepted by the Indraprastha Apollo Hospital in New Delhi, one of India’s largest health-care chains.
CLFA was established in November 2010 during the People’s Partnership administration of Kamla Persad-Bissessar with ten per cent of her prime minister’s salary and five per cent of the salary of ministers going into the fund.
However, in the years since its establishment, questions have been raised about the operations of the CLF. Last May it came under the scrutiny of the Joint Select Committee (JSC) on Local Authorities, Service Commissions and Statutory Authorities chaired by Senator Dr Varma Deyalsingh.
In response to questions about what was being done to prevent fraud or corruption following allegations of financial impropriety made against the CLFA in 2014, director Karen Seebaran-Blondet told the JSC that the disbursement of cash at the CLFA’s offices had been stopped and instead payments are being made directly to the hospitals where children are getting treatment.
This followed allegations that thousands of US dollars—money intended for parents accompanying their sick children abroad for surgery—had been embezzled. The money was never received by the parents.
Financial reports submitted to the JSC last year show that the CLF has two main bank accounts. One is used for grant funding-related activities for approved clients receiving life-saving surgeries abroad and the other is an investment account, used for the receipt of funding in T&T dollars.
As at March 31, 2021, the combined balance of the two accounts was $30,485,720.58.
There are also two US dollar accounts, one of which is used to receive refunds in US dollars from overseas suppliers. The combined balance of the US Dollar Accounts was US$869,461.35 at the time of CLFA’s May 2021 submission to the JSC.
However, there are lingering concerns that the fund is not accessible to some seriously ill children. Dr Deyalsingh told the Sunday Guardian he is advocating for the CLFA to cover patients with Beta-thalassemia major, a blood disorder that reduces the production of haemoglobin. The disease is characterised by severe anaemia requiring regular red blood cell transfusions and the only cure is a bone marrow transplant which is not available locally.
Shannen Luke, Terrance Chandoo and Jovi Mitchell, who all have this condition, were rejected by the CLFA after being told that they did not qualify because the condition isn’t life-threatening.
As with many other children who were turned down by the CLFA for various reasons, the parents of these children have been raising funds through barbecues, sales and GoFundMe campaigns, in addition to making appeals to Government agencies, charitable organisations, so that treatments can be done abroad.
There is some good news. Jovi Mitchell, 11, is currently undergoing treatment at the Bambino Gesu Hospital in Rome, Italy. His parents Anita and Andrew Mitchell, and his sister Ashley, eight, are there with him.
Anita Mitchell told the Sunday Guardian: “Jovi’s body rejected the two bone marrow transplants that he had received from both parents. The doctors are searching for an unrelated donor with a closer match on the international bone marrow registry for him, so we are just waiting, we’re not sure how long the wait will be.
The family expressed their gratitude to the Society for Inherited and Severe Blood Disorders T&T Ltd has always been for their support in getting treatment for their son.
The Sunday Guardian reached out to CLFA chairman Dr Diane Alexander for an interview on the current status of the facility. However she said the CLFA board had decided at a meeting last week not to grant any interviews at this time.