Hon. Rosemary Moodie: Honourable senators, today I’m honoured to speak as critic of the important bill brought by our colleague Senator Martin: Bill S-260. I thank Senator Martin for introducing this bill of which I am generally supportive.

Diffuse midline glioma is a particularly aggressive form of brain cancer that affects children around the ages of 5 to 10 years of age. As a senator particularly focused on children’s health and well-being, my heart breaks for victims and their families, and my sympathies sit strongly with them. This is an awful, devastating disease that I’ve seen in some patients. I hope we as policy-makers can continue to strive toward an end to the suffering of these children as health care remains also a large part of this effort.

Cancer remains one of the most common killers in our society today. Around 85,000 Canadians lose their battles with cancer each year. Virtually everyone has been touched by this disease, as roughly two in five Canadians will have cancer in their lifetime while one in four will ultimately succumb to it. Cancer affects not only its victims but also those around them, who are often needed to care for their loved ones and who watch them deteriorate very slowly — particularly hard when this is a child.

However, it is important to remember that not all cancers are created equal. Some cancers are easily treated and even removable without treatment, while some, like diffuse midline glioma, are particularly harsh for the victims and their families. It is incredibly important that progress move forward at a constant pace on the worst cancers that affect people in our societies. Sadly, that has not been the case for this terrible disease.

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

It is hard to get treatment for diffuse midline glioma. There is little access to services because few professionals deal with this problem, as is the case in many other areas of health care. But in a relatively unique way, one issue that is impacting this disease and its treatment is a complete 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 did 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, invariably results in the cancer’s reappearance within six months. This disease is no minor ailment, colleagues. It is one of the most serious things with which a patient can be diagnosed.

The typical estimated survival post-diagnosis is a mere 9 to 15 months. Only 30% of patients are expected to live a full year; less than 10% live two years. Five years post-diagnosis, the survival rate is usually zero.

Remember, colleagues, that this disease primarily affects our children — children whose entire lives are before them but have them stolen by this incurable, fatal disease.

Honourable senators, this disease is putting our children through unspeakable horror before taking them from us. An effective treatment is needed, funding for research is needed and awareness is needed. I believe this bill is a positive step in the right direction.

I will share with you Adaura’s story. Adaura Cayford was a girl with midline diffuse glioma who was taken from her family by the disease on July 1, 2020, after an 11-month battle. Adaura was like any other child. She loved her family, her dogs, the colour purple, movies, soccer, dancing, pancakes and swimming. It’s a tragedy that Adaura was left with the same treatments and chance of survival as a patient would have had 20 years ago. She was doomed — not just by the disease, but by our lack of progress.

Across Canada, there are many more tragic stories like Adaura’s. The only way we can stop this suffering is by developing new and more effective treatments. This is where key organizations such as Brain Canada come into place.

Brain Canada serves as a national convenor and enabler of 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. Overall, Brain Canada’s goal is to provide equal access to, and benefit from, the results of bold brain research.

We need to fund 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 fight against diffuse midline glioblastoma and work toward making sure that this disease is no longer a death sentence for our children. This is why I encourage all senators to support this bill. Making May 17 “National Diffuse Midline Glioma Awareness Day” is a positive step in recognizing the collective effort that is needed to defeat this disease.

I’d like to thank my colleague Senator Martin, once again, for introducing this bill. Should it be adopted, we must not rest on our laurels. It is my significant 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.