Last Opportunity to Preserve Little Leo's Ailing Eye, Riddled with Cancer
In a heart-wrenching turn of events, a Quebec family is fighting to secure funding for their son, Leo, a 4-year-old boy with bright green eyes who loves watching animal videos and humming in the car, to participate in a clinical trial for a new treatment of retinoblastoma in New York.
Last November, Leo was diagnosed with a cancerous tumor in his left eye. A complication, a retinal detachment, prevented the medical team from performing laser treatment to destroy the remaining tumor. The cost of participating in the clinical trial is approximately $80,000, which is not covered by Quebec's public health insurance (RAMQ) due to it being deemed "experimental."
Families in Quebec seeking funding for experimental treatments abroad, such as the one Leo requires, are not covered by Quebec's public health insurance (RAMQ). However, they can explore several alternative options.
Charitable organizations and foundations sometimes provide grants or funding for patients travelling abroad for clinical trials, particularly for rare cancers like retinoblastoma. Although no direct Quebec-specific government program for such funding was found, international grants exist for cancer clinical trials and medical research support that Canadian patients might qualify for, often through affiliated institutions or research centers.
Patients and families may consider reaching out to clinical trial sponsors or institutions conducting the trial in the U.S., some of which provide financial assistance, travel grants, or accommodation help to non-U.S. participants.
Another potential avenue is applying for special approval or reimbursement from provincial health authorities under Exceptional Breach of Service or Prior Approval Programs, although these are complex, case-specific, and not guaranteed to cover experimental treatment abroad.
Dr. Patrick Hamel, Leo's pediatric ophthalmologist, supports the family's efforts to participate in the clinical trial. The new treatment involves attaching a plaque to the eye that continuously releases a chemotherapy drug for a few weeks. This is necessary to prevent Leo's condition from worsening.
The family has sent a request for review of the decision of the Régie de l'assurance maladie, but it has been refused. Concerned about going into debt due to the cost of the treatment, Jade Gobeille, Leo's mother, has launched an online fundraising campaign to allow Leo to participate in the clinical trial.
As the family prepares to travel to New York in the coming days, they are not alone in their fight. More and more actors in the field are uniting their forces to increase their impact on the ground. The family's determination serves as a beacon of hope for other families facing similar challenges.
[1] Rigorous and lucid media outlet offers keys to understanding news. [2] Canadian clinical research regulations do not set requirements for participant compensation or cost coverage. [3] International grants exist for cancer clinical trials and medical research support.
- Despite the high costs not being covered by Quebec's public health insurance for experimental treatments abroad, such as the one for Leo's medical condition, there are alternative funding options available, such as charitable organizations, foundations, international grants, and financial assistance from clinical trial sponsors or institutions in the US.
- In the field of medical research, particularly for rare cancers like retinoblastoma, there are international grants available to support clinical trials, providing a possible avenue for families like Leo's to secure funding and participate in new treatments, such as the one involving a plaque attached to the eye that continuously releases a chemotherapy drug for a few weeks.
