The Hon. the Speaker: Honourable senators, when shall this bill be read the third time?

(On motion of Senator Plett, bill referred to the Standing Senate Committee on Legal and Constitutional Affairs.)

The Senate proceeded to consideration of the twenty-first report (interim) of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Act Now: Solutions for Temporary and Migrant Labour in Canada, deposited with the Clerk of the Senate on May 21, 2024.

The Hon. the Speaker: Is it your pleasure, honourable senators, to adopt the motion?

Some Hon. Senators: Hear, hear.

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.

Hon. Senators: Agreed.

(Debate adjourned.)

On the Order:

Resuming debate on the inquiry of the Honourable Senator Boniface, calling the attention of the Senate to intimate partner violence, especially in rural areas across Canada, in response to the coroner’s inquest conducted in Renfrew County, Ontario.

Hon. Tony Loffreda: Honourable senators, I note that this item is at day 15, and I’m not ready to speak at this time. Therefore, with leave of the Senate and notwithstanding rule 4-15(3), I move the adjournment of the debate for the balance of my time.

Hon. Senators: Agreed.

(Debate adjourned.)

The Hon. the Speaker: Is leave granted, honourable senators?

Hon. Tony Loffreda: Honourable senators, I note that this item is at day 15. Therefore, I move the adjournment of the debate.

(On motion of Senator Loffreda, debate adjourned.)

On Other Business, Senate Public Bills, Second Reading, Order No. 23, by the Honourable Yonah Martin:

Second reading of Bill S-267, An Act to amend the Criminal Code (aggravating circumstance — evacuation order or emergency).

Hon. Yonah Martin (Deputy Leader of the Opposition) moved second reading of Bill S-260, An Act respecting National Diffuse Midline Glioma Awareness Day.

She said: Honourable senators, I’m honoured to rise today as the sponsor of Bill S-260, An Act respecting National Diffuse Midline Glioma Awareness Day. This enactment designates May 17 in each and every year as national diffuse midline glioma awareness day. It is also known formerly as diffuse intrinsic pontine glioma, or DIPG.

I would like to acknowledge my colleague in the other house, member of Parliament Joël Godin, a true champion, for his tireless work on behalf of the families in his riding of Portneuf—Jacques-Cartier and all families across Canada who are affected by this terrible disease.

Diffuse midline glioma is an aggressive brain tumour that attacks the brain stem and slowly destroys all vital functions, even as cognitive function remains intact, rendering the affected person a prisoner in his or her own body. DIPG is the leading cause of brain tumour death in children in Canada, affecting children who are five to seven years of age. DIPGs are most common in children and are fast-growing, likely to spread and difficult to remove surgically.

The most common DIPG symptoms a child may experience are problems with walking, coordination or balance; weakness in the arms and legs; difficulty controlling facial expressions; speech impairment; problems with swallowing and chewing; and double vision or difficulty controlling eye movements. These brave children are fighting for their lives, and their families are helpless to save them.

Diffuse midline glioma is inoperable, incurable and fatal, with a 0% survival rate. Bill S-260 will bring hope to these families who have lost a child, who even in their own grief continue to fight for awareness and support for other families who are facing the same unthinkable situation and loss that they felt. They are united in their fight to find answers, research and resources to combat this terrible disease.

For over 40 years, the prognosis and treatment for diffuse midline glioma have remained unchanged. These families continue to fight despite all odds, and they need more support. With the passage of Bill S-260, increased awareness will be given to this disease, encouraging public and private investment in research, which in turn will improve prognosis and treatment, not only in Canada but around the world.

May 17 is already recognized in other countries as Diffuse Intrinsic Pontine Glioma Awareness Day. Bill S-260 would bring Canada to the same level as these other countries, designating May 17 as national diffuse midline glioma awareness day or DIPG awareness day.

Honourable senators, as I conclude, I would like to read into the record the names of the beautiful angels who have inspired this bill: Adaura Cayford, 9 years old; Alexandra Brodeur, 8 years old; Alicia Jolicœur Vella, 8 years old; Claire Sommer, 13 years old; Ellie Bonnett, 4 years old; Florence Gagné, 5 years old; Gabriel Rey, 12 years old; Gordie White, 4 years old; Isaac Dupré, 5 years old; Isabelle Borkowski, 4 years old; James Lavoie, 5 years old; Jordana Fiorini, 10 years old; Jordyn Chan, 6 years old; Julia De Luca, 5 years old; Justin Brouwer, 9 years old; Kara MacLellan, 4 years old; Karter Bourgeault, 5 years old; Kayge Fowler, 6 years old; Maika Lefebvre, 5 years old; Marie‑Ange Forest, 11 years old; Matthew Isaak, 10 years old; Mia Bordeleau, 4 months old; Myah Windrim, 8 years old; Naomi Nevesely, 7 years old; Nathan Froese, 8 years old; Neil Ashamock, 17 years old; Nelina MacPherson, 6 years old; Noah Mercier, 7 years old; Olivia Hirsch, 5 years old; Ronan Smyth, 13 years old; Ronny Betterley, 7 years old; Sarah Kim-Bouchard, 10 years old; Théo Daigle, 6 years old; Trinity Ellsworth, 6 years old; Tyler Palmowski, 13 years old; Victoria-Rose Bilodeau, 11 years old; and Willow Lanto, 3 years old.

Honourable senators, today I ask your support for Bill S-260 to designate May 17 as diffuse midline glioma awareness day, DIPG awareness day, in honour of these beautiful angels and in the hopes of finding new treatments and better prognosis for future children and families. Thank you.

(On motion of Senator Clement, debate adjourned.)

Leave having been given to revert to Other Business, Senate Public Bills, Reports of Committees, Order No. 1:

On the Order:

Resuming debate on the motion of the Honourable Senator Black, seconded by the Honourable Senator Patterson (Nunavut), for the adoption of the tenth report of the Standing Senate Committee on Agriculture and Forestry (Bill S-236, An Act to amend the Employment Insurance Act and the Employment Insurance Regulations (Prince Edward Island), with a recommendation), presented in the Senate on May 17, 2023.

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Martin, bill placed on the Orders of the Day for second reading two days hence.)

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

(On motion of Senator Martin, bill placed on the Orders of the Day for second reading two days hence.)

Hon. Yonah Martin (Deputy Leader of the Opposition) introduced Bill S-260, An Act respecting National Diffuse Midline Glioma Awareness Day.

(Bill read first time.)