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Opinion: Quebec children with diabetes are denied life-changing help

Continuous glucose monitoring systems are a big improvement over having to repeatedly put blood on a test strip, but RAMQ won't cover them.

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The 4,000 Quebec children who live with Type 1 diabetes, including my daughter, have been told: “Your health isn’t a priority.”

Continuous glucose monitoring systems can be life-saving for children with Type 1 diabetes, as well as for adults, but Quebec refuses to cover them under the RAMQ. This denial also affects those with private insurance, who often are only covered for what is on the RAMQ list. The systems cost about $4,700 per year, an expense beyond reach for many families, and a crushing amount for many others. Yukon and Saskatchewan governments have embraced, and funded, the technology, which overall, saves costs to besieged health-care systems.

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Type 1 diabetics must monitor their blood sugar levels in order to manage life-threatening risks. Until a few years ago, the only option was testing by means of a painful pin-prick to draw blood many times a day; the blood is put on a test strip inserted into a glucose meter, which provides a reading. Continuous glucose monitoring systems are a big improvement. Worn by the patient, they issue alerts when blood glucose levels reach dangerous levels or change in a concerning way, allowing the patient or a parent to take appropriate action.

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I launched a petition in June 2019 to call attention to this serious issue, news of which made it to our legislators, when MNA David Birnbaum spoke of it to his National Assembly colleagues. The aim of the petition, on behalf of the Association of Parents of Children with Diabetes, was to encourage our government to ensure parents like me have equitable access to this essential technology that keeps our children alive by avoiding catastrophic hypoglycemic reactions, and improves their life expectancy by reducing the risk of complications in the future.

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Birnbaum’s address outlined the life-threatening risks of Type 1 diabetes, and I saw from my balcony seat solemn faces tilting down, learning of the challenges that only people living with this chronic disease and their caregivers witness. As non-medical professionals, parents and children are left to self-manage prescription drugs (calculate, dose, adjust and administer insulin).

Quebec’s Health minister at the time, Danielle McCann, responded in November 2019 that without the recommendations of the independent government approval body that this technology should be included on the RAMQ list, her hands were tied.

In February 2020, the independent government-approval body published its recommendations. It recognized the risks for the pediatric population, and life-threatening dangers that the condition represents — as well as the significant therapeutic value of the technology.

Yet, RAMQ coverage was denied, for children and adults alike, because it was deemed too expensive, and would not be a “fair, reasonable and equitable option” for the health-care system. Ignored in their cost-benefit analysis was the health-care costs of patients with diabetes who are covered by private insurance; these patients also end up requiring more public health care if they are not able to keep their glucose levels in the desired range. Additionally omitted were costs related to the loss of productivity and absenteeism, mental health problems, pre-and postnatal care complications, ketoacidosis hospitalizations and ailments like bone fractures.

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Since March of this year, the world has learned what it felt like to be stricken by an invisible health threat, with no available cure. During a meeting with the health minister’s staff back in May, we also alerted them that uncontrolled blood sugar worsens the prognosis of COVID-19.

The political will has to now come from the top, with Premier François Legault. It is he who must step forward, using the muscle of his office, to insist that “fair and equitable” means children with Type 1 diabetes have the right to live a healthy and safe life.

We must demand that “fair and equitable” means an end to the economic discrimination against those who cannot afford to pay for glucose monitoring.

We’re asking for 4,000 friends.

Michaella Etienne is the founder of the Association of Parents of Children with Diabetes. She lives in Montreal.

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