Tired of fighting for equal care in Canada: Brent’s ongoing battle with cancer
Brent Joel, a resident of North Burnaby in Metro Vancouver, was first diagnosed with non-Hodgkin’s lymphoma and Myelodysplastic syndrome (MDS) in November of 2022, at the age of 65. Prior to his cancer diagnosis, Brent lived his life to the fullest and was looking to enjoy his life as a retired firefighter. After years of feeling tired and run down, Brent was shocked to receive his cancer diagnosis.
Brent’s doctors advised him to treat the non-Hodgkins lymphoma first, before addressing the MDS, as it was a less aggressive form of cancer. Brent went through multiple rounds of chemotherapy in February of 2023, which thankfully was successful and put his lymphoma into remission. Now Brent was waiting to see what the treatment plan would be for his MDS.
Brent’s medical team decided that to treat Brent’s MDS and his symptoms of exhaustion and anemia, he would be given weekly blood transfusions as well as being put on Decitabine/Cedazurdine.
This treatment left Brent even more tired than before with many side effects such as extremely high enzymes in his liver and a horrific cough. He was not able to function on a daily basis. Additionally, he and his wife Michele were driving all the way from Burnaby to Vancouver twice a week for his transfusions. His medical team chose to take him off of this treatment and at this time they felt it was too toxic for his system to handle.
There is something out there that could help Brent. The drug called Reblozyl. This is a treatment that is not currently covered in British Columbia but covered everywhere else in Canada. Due to this disparity, the treatment would cost Brent and Michele over $100,000 annually out of pocket. The advantage of Reblozyl is that it increases the red blood cells and hemoglobin in the blood, with the intent of reducing the anemia requiring fewer or no transfusions. Too many transfusions can cause iron overload in the liver.
Brent and Michele have dedicated their time to advocate for the right treatments to be available and accessible for people in British Columbia living with cancer who need them.
Brent’s message to British Columbia’s government in waiting – improve timely and equitable access to the treatments British Columbians need.
Brent and Michele’s message to others going through a similar journey is to take every day as it comes. There will be good days, and there will be lots of bad days. Michele has been a constant support for Brent throughout his treatment, and this experience has been hard on them and their three adult children and their families. Brent and Michele are hopeful that in the future, other families in B.C. will not have to fight as hard to have their loved ones taken care of.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
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