Quebec mother being denied full coverage of ultra-specialized brain surgery

Celyn Harding-Jones says she is exhausted from dealing with the province’s health insurance plan (RAMQ).

“I feel like I’m being, to be honest, buried in administrative, bureaucratic processes at this point,” Harding-Jones said.

The mother of two filed papers requesting the province’s health insurance to cover the costs of an endoscopic brain surgery abroad, so one of the only experts in the world can remove her extremely rare tumour, a colloid cyst.

But RAMQ has only agreed to pay for the doctor fees, not the hospital fees. The fees can amount to more than $100,000, which Harding-Jones says she can’t afford.

Colloid cysts are fluid-filled sacks that lodge in the brain’s ventricles. They only occur in about three people per million population.

As a result, she claims she suffers from major headaches, cognitive issues, pain and movement issues that she says have sent her several times to the emergency room.

In some cases, a colloid cyst can also cause sudden death.

Harding-Jones’ Quebec doctors say they can’t remove her cyst because they don’t have the expertise to treat her case without major risks.

“The risks of seizure of stroke, of memory loss, of paralysis, of death are all higher with a craniotomy,” Harding-Jones explained.

So Harding-Jones’ current treatment plan in Quebec is to wait for an emergency to operate — in her case, for hydrocephalus to occur. Hydrocephalus is when the brain’s ventricles fill with fluid.

This, Harding-Jones says, can lead to potential physical and intellectual consequences and even the risk of death.

“How do you prepare your whole life for an emergency? I’ve done it for 20 years with this tumour but I can’t do it anymore,” Harding-Jones says. “With kids, the ripples and the waves that could cause…. I’m not willing for that to happen. My drive to fight to get that proper treatment is because you can’t be in that situation.”

RAMQ based its response on the fact that the surgery is available in Quebec and that doctors could perform it.

“The Regie is unable to cover the cost of these services because the specialized services required are available in Quebec, notably at CHUM Montreal,” the decision rendered read. “If you receive the services stated in the requested physician’s authorization request outside of Canada the Regie will reimburse the professional cost of the professional services up to the applicable Quebec rates. However, you will have to pay for all hospital related services.”

Paul Brunet, head of the Conseil de Protection des Malades, a patients’ rights advocacy group, says he often sees cases where RAMQ’s decisions “make no sense.”

“This is so bureaucratic and ridiculous,” said Brunet.

“If you cannot find the adequate treatment in Quebec, get it elsewhere and be reimbursed, and if you have to get it from a doctor that practices in a hospital outside Quebec, guess what? You have to reimburse. This is the law of the land,” Brunet explained, citing the Superior Court of Canada’s 2005 decision on Chaoulli vs. Quebec.

Brunet says the decision made it possible for Quebecers to access private care when appropriate treatment cannot be given to a patient within the province’s medical system, which he believes is the case for Harding-Jones.

Brunet says the level of bureaucracy people face in dealing with the province’s health insurance could put people’s lives in danger.

“If that patient cannot get the treatment she or he needs, this could be a life-or-death situation,” Brunet says.

Patrick Martin-Menard, a medical lawyer, agrees.

While he doesn’t have all the details of the case available, he believes the province’s health insurance can do more to provide appropriate care to Harding-Jones.

“It seems to be a situation where RAMQ should decide otherwise and should decide to cover this service,” Martin-Menard said.

In addition, Martin Menard believes RAMQ’s process lacks transparency, because it isolates the patient.

When a decision is rendered, patients are not allowed to ask questions to RAMQ, only through their doctors.

Doctors, he says, are also put in a tough spot, forcing them to fill out papers that require legal knowledge.

“That’s what I really find problematic with this process,” Martin-Menard says. “Doctors are not lawyers. When they write their request with the RAMQ, they will not necessarily have all the legal criteria in mind.”

Menard, Brunet and Harding-Jones all agree the system needs to change in order to put patient care first.

Harding-Jones says she will continue to fight and will file an appeal because she wants to make sure she can be around for her son and daughter, who has special needs.

“I’m not going to leave her. It’s just not an option,” she said.

Global News emailed and called RAMQ who say they are preparing a response.

Antoine de la Durantaye, a spokesperson for Quebec’s Minister of Health says they sympathize with the situation but can’t comment on the specific case because he doesn’t have all the details. “Every case is particular and usually, costs are reimbursed by RAMQ,” de la Durantaye wrote in a text before referring Global News to Quebec’s Health Ministry.

Global News is waiting for a response from the ministry.