Afinitor, Tuberous Sclerosis Complex, and Bureaucracy

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06/27/23

Cathy Evanochko is co-founder of Tuberous Sclerosis Canada and the mother of Kimberly who was diagnosed with tuberous sclerosis complex (TSC) in 1986 and with lymphangioleiomyomatosis (LAM) in 2007.

TSC impacts multiple organs of the body. Fortunately, the drug Afinitor (everolimus) works on many of those organs to improve the overall health of TSC patients. That is the good news. The bad news is that getting access to the drug in Canada requires both provincial and federal authorities to approve the drug for each indication. As such, a patient in one province may not have access to the drug simply due to their location and the main organ that is affected.

For more information, vist www.tscanada.ca/