Living With Cystic Fibrosis

We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.

Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.

In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over three yrs to support it. The expectation was that drugs for rare diseases would have a quicker pathway and that it would address the specific challenges of the rare community and fill some of the many gaps to access. Sadly, that has not been the case thus far.

Beth says, “There are a lot of challenges for patients, it’s very timely, there are a lot of gaps that will potentially harm patients.” Touraj is one of the patients falling through the gaps.

Touraj says his FEV1 is 35 percent, which means he is potentially looking at a double lung transplant. “It is shocking that in the next two to three years I might be getting to the point of needing a transplant. We’re sad about it. My girlfriend is sadder about it than I am right now. I think of it as more of a reality.” The hope would be access to a drug, despite his rare mutation, but the ability to try it.

To connect with Touraj

Instagram: https://www.instagram.com/tojyla/

Facebook: https://www.facebook.com/touraj.dehghan/

Linkedin: https://www.linkedin.com/in/touraj-manshadi

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