ROBINSON: Canadians with glioblastoma enduring cruel provincial red tape

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Almost 30 years ago my father succumbed to glioblastoma multiforme (GBM), one of the most aggressive and deadly forms of brain cancer. From the stroke that led to his diagnosis to surgery, radiation, and ultimately his death, he lived a mere 66 days. He died at the too-young age of 66.

Today there is an approved treatment, but not one provincial government has given patients access.

Roughly 1,600 Canadians are diagnosed with GBM each year. When my dad died in December 1996, survival rates were 5%, today, 6%. Median survival is just over a year, and only one in twenty patients will live beyond five years.

Despite aggressive treatment – typically a combination of surgery, radiation, and chemotherapy — GBM often returns. It insidiously invades brain tissue, making full surgical removal impossible. The blood-brain barrier prevents 99% of small- and large-molecule therapies used for other cancers from reaching a GBM tumour. Worse, GBM evades treatment and can build immunity to conventional chemotherapy, frustrating researchers, clinicians, patients, and their families.

For decades, the toolbox available to patients and clinicians to fight back has been almost empty.

Today, clinical trials are underway on nanotech-delivered treatments that evade the blood-brain barrier fortress. Other countries are increasing survival rates with combination drug therapies. And material science innovation has given us a surgically implanted dissolvable wafer to better treat these tumours.

In addition, a new therapy, Optune – also known as Tumor Treating Fields (TTFields), offers a unique and non-invasive treatment option. When combined with chemotherapy, Optune has been shown to significantly extend survival by months, and in some cases, doubled life expectancy. This is a major medical advancement.

But, sadly, not a single province has committed to funding it, despite its approval by Health Canada in 2022 and a recommendation for public funding by Canada’s Drug Agency in early 2024.

For Canadians with glioblastoma, this is cruel provincial red tape. Canadians are dying on waiting lists and cannot get access to Health Canada-approved medical treatments. It is exactly the kind of barrier that undermines faith in our public health system and in the faceless, unaccountable officials who administer it.

Politicians often speak about their commitment to accelerate access to life-saving therapies for Canadians. Heck, the premiers have repeatedly pledged to fix this issue, without any resulting action or access. Meanwhile, GBM patients in other countries are living longer with Optune.

The federal government has already allocated $1.4 billion, and signed bilateral deals with all provinces, to fund treatments for rare diseases. By every definition, GBM is a rare disease. And Optune is a textbook case of what this funding is supposed to support. It has cleared every scientific and regulatory hurdle in Canada but remains out of reach to patients.

My father died long-before this innovation came along. But for the 1,600 Canadians who will receive glioblastoma diagnoses this year alone, Optune could offer hope to some of them to extend their lives. Our provincial governments have the power to give them a few more priceless months with their loved ones. A chance to walk a daughter down the aisle or share one more Christmas morning with their son.

The money is already set aside. The approvals have been granted. There is no excuse to wait another day, another hour, or another minute.

— Walter Robinson, is a former life sciences executive and member of the Board of Directors of the Canadian Organization for Rare Disorders (CORD).