Access to tovorafenib for Canadian children and young adult patients battling brain cancer (low-grade glioma)
This petition is for the implementation of a special access program for tovorafenib as monotherapy for pediatric, adolescent, and young adult patients in Canada who are battling recurrent, relapsed or progressive low-grade glioma (LGG) with a known RAF alteration. Given the urgent medical needs of these vulnerable patients and the limitations of existing therapies, we urge Ipsen Canada, DayOne Pharmaceuticals and Health Canada to facilitate access to this targeted therapy through a special access program.
The Burden of Disease
Pediatric, adolescent, and young adult patients with recurrent, relapsed or progressive LGG harboring RAF alterations face significant health challenges that impact not only their survival but also their quality of life, development, and future potential. LGG, while classified as a "low-grade" tumor, can be severely debilitating when progressive, leading to vision loss, motor impairment, seizures, cognitive decline, and chronic pain.
The Urgent Need for Access to Tovorafenib
Tovorafenib is an oral, selective RAF inhibitor with promising efficacy and a favorable safety profile for patients with RAF-altered tumors, including pediatric low-grade gliomas. Tovorafenib offers a targeted approach while effectively controlling tumor progression.
Preliminary clinical data suggest that tovorafenib can provide meaningful tumor control with improved tolerability, allowing patients the opportunity to continue their education, social interactions, and normal development with fewer interruptions from debilitating side effects. Given the urgent medical need and lack of optimal treatment alternatives for these patients, it is imperative that access be granted to this promising therapy through a special access program.
A Call for Action
As advocates for these young patients, we believe that every child, adolescent, and young adult deserves the best possible chance for a healthy future, free from the devastating side effects of the disease and harsh treatments. Special access programs exist to bridge the gap for patients who have exhausted standard treatment options and urgently require innovative therapies.
We urge Ipsen Canada, DayOne Pharmaceuticals and Health Canada to work collaboratively in ensuring that tovorafenib is made available to these patients through a special access program. These young individuals deserve hope, effective treatment, and the opportunity to thrive, and we implore you to take swift action to make this critical therapy accessible in Canada.
Sincerely,
Pam Jackson, a mother fighting for better treatment options for my 17 year-old daughter battling recurrent low-grade glioma
Updates
Reached 5,000 supporters
March 16, 2025
March 8, 2025
The momentum behind this request is shifting. Families deserve these answers.
Reached 1,000 supporters
February 17, 2025
Reached 100 supporters
February 16, 2025
783 Comments
My son had optic pathway gliomas and an inoperable plexiform neurofibroma in his mouth. Compassionate access to trametinib helped him for a long time. I hope this option happens and provides peace for your child.
I work in pediatric oncology . This is so important. These patients need everything they can to stop this terrible disease since they go through hell. they need this more than you know.
Canada is so far behind when it comes to the FDA! Come on Health Canada! We need to give children in our country the same fighting chance as others around the world. We are really doing an injustice for our children!
Please provide easier access for families to be able to get Tovorafenib for their loved ones. My daughter was on it for 2 years! It works! Praise the Lord!! I wish all children (any age) could have access to the drug.
If indeed this drug is what it is described to be please do everything in your combined power to provide it to young patients. It is so critical that our children have more effective and less invasive treatments so they can live life to the full, even during treatment for this terrible cancer.
Prayers to Pam & Zoey
Lili M. Muise
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Access to tovorafenib for Canadian children and young adult patients battling brain cancer (low-grade glioma)
This petition is for the implementation of a special access program for tovorafenib as monotherapy for pediatric, adolescent, and young adult patients in Canada who are battling recurrent, relapsed or progressive low-grade glioma (LGG) with a known RAF alteration. Given the urgent medical needs of these vulnerable patients and the limitations of existing therapies, we urge Ipsen Canada, DayOne Pharmaceuticals and Health Canada to facilitate access to this targeted therapy through a special access program.
The Burden of Disease
Pediatric, adolescent, and young adult patients with recurrent, relapsed or progressive LGG harboring RAF alterations face significant health challenges that impact not only their survival but also their quality of life, development, and future potential. LGG, while classified as a "low-grade" tumor, can be severely debilitating when progressive, leading to vision loss, motor impairment, seizures, cognitive decline, and chronic pain.
The Urgent Need for Access to Tovorafenib
Tovorafenib is an oral, selective RAF inhibitor with promising efficacy and a favorable safety profile for patients with RAF-altered tumors, including pediatric low-grade gliomas. Tovorafenib offers a targeted approach while effectively controlling tumor progression.
Preliminary clinical data suggest that tovorafenib can provide meaningful tumor control with improved tolerability, allowing patients the opportunity to continue their education, social interactions, and normal development with fewer interruptions from debilitating side effects. Given the urgent medical need and lack of optimal treatment alternatives for these patients, it is imperative that access be granted to this promising therapy through a special access program.
A Call for Action
As advocates for these young patients, we believe that every child, adolescent, and young adult deserves the best possible chance for a healthy future, free from the devastating side effects of the disease and harsh treatments. Special access programs exist to bridge the gap for patients who have exhausted standard treatment options and urgently require innovative therapies.
We urge Ipsen Canada, DayOne Pharmaceuticals and Health Canada to work collaboratively in ensuring that tovorafenib is made available to these patients through a special access program. These young individuals deserve hope, effective treatment, and the opportunity to thrive, and we implore you to take swift action to make this critical therapy accessible in Canada.
Sincerely,
Pam Jackson, a mother fighting for better treatment options for my 17 year-old daughter battling recurrent low-grade glioma
Updates
Reached 5,000 supporters
March 16, 2025
March 8, 2025
The momentum behind this request is shifting. Families deserve these answers.
Reached 1,000 supporters
February 17, 2025
Reached 100 supporters
February 16, 2025
783 Comments
Surely somebody who works for this pharmaceutical company is a mother and if they are, they should ask themselves. What would they do in the situation if it was their child. This child has a whole life ahead of them. Surely there can be an approval for this situation.
My son had optic pathway gliomas and an inoperable plexiform neurofibroma in his mouth. Compassionate access to trametinib helped him for a long time. I hope this option happens and provides peace for your child.
I work in pediatric oncology . This is so important. These patients need everything they can to stop this terrible disease since they go through hell. they need this more than you know.
Canada is so far behind when it comes to the FDA! Come on Health Canada! We need to give children in our country the same fighting chance as others around the world. We are really doing an injustice for our children!
Please provide easier access for families to be able to get Tovorafenib for their loved ones. My daughter was on it for 2 years! It works! Praise the Lord!! I wish all children (any age) could have access to the drug.
If indeed this drug is what it is described to be please do everything in your combined power to provide it to young patients. It is so critical that our children have more effective and less invasive treatments so they can live life to the full, even during treatment for this terrible cancer.
Prayers to Pam & Zoey
Lili M. Muise
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Surely somebody who works for this pharmaceutical company is a mother and if they are, they should ask themselves. What would they do in the situation if it was their child. This child has a whole life ahead of them. Surely there can be an approval for this situation.