National Diffuse Intrinsic Pontine Glioma Awareness Day Bill

Honourable senators, I rise today to speak as the critic on this important bill, Bill S-244, An Act respecting National Diffuse Intrinsic Pontine Glioma Awareness Day.

First, I would like to thank Senator Martin for her dedication in raising awareness of diffuse intrinsic pontine glioma.

Bill S-244 will designate May 17 each and every year as national diffuse intrinsic pontine glioma awareness day. Diffuse intrinsic pontine glioma is a particularly aggressive form of brain cancer, which primarily affects children around the ages of 5 to 10, but it can also affect adults. I have dedicated my career to and have focused on supporting children’s health and well-being. I have seen first-hand what this disease does to families and how devastating it can be on the life of a child.

As legislators, we have the responsibility to do all that we can to end the suffering of children and to improve their health outcomes. Raising awareness is the first step in achieving better outcomes, and this bill does exactly that.

Cancer remains one of the most common killers in our society. According to a recent paper published by the Canadian Medical Association Journal, Canada will face more than 254,000 projected new cancer cases, with close to 88,000 deaths in 2026 alone. Virtually everyone has been touched by the disease, as roughly two in five Canadians will develop cancer in their lifetime, while one in four will ultimately succumb to it.

Cancer affects not only its victims but those around them, who often need to care for their loved ones and watch them deteriorate slowly and die.

However, it’s important to remember that not all cancers are created equal. Some cancers are easily treatable and even removable, while some, like diffuse midline glioma, are particularly harsh for the victims and for their families.

While it is incredibly important that progress move forward at a constant pace on the worst cancers affecting people in our society, sadly, that has not been the case for this terrible disease.

As my colleague noted and the bill states, this cancer attacks the brain stem of the victim, impairing their vital motor functions, including important actions such as swallowing, chewing and speaking. It does all this while leaving the victim’s cognitive functions more or less intact, leaving them conscious and aware — a prisoner in their own body.

It is hard to get treatment for diffuse midline glioma. Access to qualified professionals is limited, as is the case in other areas of our health-care system. What makes diffuse midline glioma uniquely dangerous is the lack of research and development for new and improved therapies. The terrible truth is that victims today have essentially the same treatment options as their counterparts up to 40 years ago.

Diffuse midline glioma is typically treated with a round of radiation therapy, which — while it helps to alleviate symptoms in the short run — almost invariably results in the cancer’s aggressive return within six to nine months later. This disease is no minor ailment, colleagues; it is one of the most serious things with which a patient can be diagnosed.

Although there have been evolving treatment options, including a recently accelerated approval by the U.S. Food and Drug Administration, or FDA, of dordaviprone, the typical estimated survival post-diagnosis is a mere 9 to 15 months, and only 30% of patients are expected to live a full year. Less than 10% live for two years. At five years post-diagnosis, the survival rate is zero.

Remember, colleagues, that this disease primarily affects our children — children whose entire lives were laid out before them before being all but stolen by an incurable, fatal disease.

Honourable senators, this disease is putting our children through unspeakable horror before taking them from us far too young. An effective treatment is needed. It’s long overdue. Funding for research is needed. Awareness is needed, and I believe this bill is a positive step in the right direction.

Across Canada, there are many families who share in this kind of grief. Senator Martin, in her speech, spoke the names of children who were deeply loved and are profoundly missed. These children are the ones who inspired this bill. I won’t repeat them today, but we will think about them.

The only way we can stop this suffering will be by developing new, more effective treatments. This is where key organizations such as the Brain Canada Foundation come into play. Brain Canada serves as a national convenor of all the Canadian brain research community. This includes efforts to assess the different ways that brain diseases and disorders affect people at various stages of neurodevelopment and aging. Brain Canada’s goal is to accelerate and support bold brain research so that its discoveries can improve brain health and benefit people in Canada and around the world.

We need to fund organizations such as Brain Canada and the many researchers in Canadian institutions and private research companies who are working to study brain diseases. This is where the federal government can step in. By investing in researchers, Canada can help the fight against diffuse midline glioblastoma and work towards making sure the disease is no longer a death sentence.

Recognizing May 17 as national diffuse intrinsic pontine glioma awareness day is important because it helps bring much‑needed attention to a disease that remains under-recognized despite its severity. Increased awareness fuels research by drawing interest from the public, policy-makers and the scientific community, while greater visibility helps build momentum for change and encourages future investment in this area. It also plays a role in inspiring students and emerging researchers to pursue work in this field, strengthening the future of discovery and the future of care. Finally, formal recognition helps support and expand fundraising efforts, which are essential to advancing research and improving outcomes for those affected.

This is why I would encourage us to support this bill — because making May 17 the national diffuse midline glioma awareness day is a positive step in recognizing the collective effort that is needed to defeat this disease.

I would like to thank my colleague Senator Martin once again for reintroducing this bill. When we vote on Bill S-244, I encourage you to support this bill as well. We must remain committed to advancing this work. It is my sincere hope that the government will take this bill as a starting point from which to launch concrete, effective action with adequate funds attached.

Thank you. Meegwetch.

I would.

I don’t have the exact number right now, Senator Yussuff. I know that the numbers are very small. Yes, it does affect a few children, but to be told when you get this diagnosis to go away and make good memories as the primary response does not feel like we’re providing families with a good alternative to facing what is a terrible disease and an end to this child’s life, inevitably.

While I don’t know the exact numbers, I wouldn’t want to venture a guess because I’m on the record. I would have to say that the numbers are small, but, in fact, the prognosis has not changed in over 40 years. Go away and make good memories is what we tell our families.