A last chance to save the eye of little Leo, reached from cancer

To save the eye of little Leo, suffering from cancer, the only option for him is to go to the United States to participate in a clinical study. But as the treatment is not covered by the Régie de l’assurance maladie du Québec (RAMQ) because he is deemed “experimental”, his family will have to pay $ 80,000. However, his medical team in Montreal would like the public diet to reconsider its position.

Leo is 4 years old and big bright green eyes. He loves watching animal videos and humming in the car. Smiling and energetic, he communicates above all with the help of gestures. At 18 months, he received the diagnosis of a rare genetic disease that affects his overall development. This affection also makes it more subject to developing a retinoblastoma, eye cancer which mainly affects young children.

Last November, the dreaded diagnosis falls: Léo has a cancerous tumor in the left eye. “When it was known, the mass already measured 18 millimeters,” says her mother, Jade Gobeille, met in their Montreal apartment.

Faced with this news, her parents refuse the idea of removing the eye and opting for chemotherapy treatments at Sainte-Justine hospital. “For it to be more targeted to the eye and not throughout the body, they pass the catheter through the main artery of the thigh to go to the eye. I still have chills, ”says the 36 -year -old woman.

First, the results are encouraging: the tumor decreases. But a complication – a detachment of the retina – prevents the medical team from carrying out laser treatment to destroy what remains of the tumor.

In early July, Leo’s medical team therefore announced to Jade Gobeille and her spouse that she will have to remove the little eye from the little one. “But there is something deep inside me who said:” No, this is not what will happen “,” recalls the mother of three children.

Clinical study

On Facebook, Jade Gobeille intends to talk about another option for Léo. In New York, a clinical study is currently testing a new treatment for people with retinoblastoma. It consists of fixing a plate on the eye that continuously releases a chemotherapy medication for a few weeks. Thus, it makes it possible to administer a more targeted treatment, in addition to eliminating all the tumor residues without requiring the withdrawal of the organ.

The D^r Patrick Hamel, pediatric ophthalmologist at the Sainte-Justine hospital which follows Léo, supports the approach of the family. “In specific cases, which resemble that of Léo, there have been good success,” raises the one who is also an associate professor in the Department of Ophthalmology at the University of Montreal.

If we had been richer, we would already be participating in the study

On July 9, the D^r Hamel therefore submits an authorization request for services outside Quebec at the RAMQ. Two days later, however, he was refused.

“Based on the information provided and after an evaluation of a doctor from the Régie, the latter cannot assume the cost of these services because they are of an experimental nature and are not insured in Quebec,” writes the RAMQ in a letter consulted by The duty.

The D^r Hamel persists, however, because even if the study is only in the phase which assesses its effectiveness, it seems “promising” for the treatment of retinoblastomas. “From my knowledge of this study and the case of this patient, it is allowed to hope for a favorable outcome. I would therefore like the $ 80,000 necessary to participate in the study will be covered by the public scheme, “he said.

The family sends a request to revise the decision of the health insurance management, but it is refused, says Jade Gobeille.

Called to react, the RAMQ responded to Duty Do not comment on specific cases for reasons of confidentiality.

Call to the public

In order to allow Léo to participate in the study, Jade Gobeille resolved to launch an online fundraising campaign.

“I think we shouldn’t have to call on the public for something essential like that. We just want to give Leo a chance without having to go into debt, ”she says, her voice trembling.

However, his son must quickly start this treatment so that his condition does not degrade too much. The family will therefore go to New York in the coming days. “If we had been richer, we would already be participating in the study,” blows M^me Gobeille.

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