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(VIDEO) Wilson asks government to fund cystic fibrosis medication

(November 1, 2019) Simcoe-Grey MPP Jim Wilson is calling on the Ontario government to fund life-saving medication for children with cystic fibrosis, including two young boys from Tottenham.


In the Ontario Legislature yesterday, Wilson read aloud a letter he received from the boys’ mother Sasha Haughian. He urged the government to act immediately to help children in need by approving lifesaving cystic fibrosis medications that are available and funded in most other parts of the world. 

Wilson also reminded the government that five years ago he raised the exact same issue on behalf of his constituent Madi Vanstone who at the time was 12-years-old. While the medication Madi needed was eventually funded for her, the root of the problem was never addressed.

Wilson says that in the long run the government needs to develop a rare drug strategy to fix the problem.

You can read the full text of Wilson’s statement below:

Ontario Hansard - 31-October2019


Mr. Jim Wilson: I’d like to read an important email I received this week from my constituent Sasha Haughian from Tottenham. I’ve been working with Sasha and her husband, Jamie Larocque, for over a year concerning coverage for cystic fibrosis medications for their two young sons.


Sasha’s letter reads:

“Hello again Jim,


“This was a big week for the CF community around the world.” But “unfortunately, we are getting left farther and farther behind.


“The FDA announced the approval of a new triple therapy gene modulator this week.... I can’t describe how left out so many of us Canadians feel, knowing we are still fighting for Orkambi, which is now becoming ancient to the rest of the world.


“As well, England (one of the countries the Ministry of Health always compares us to when defending their stance on Orkambi) just signed a deal with Vertex and are providing public access for all gene modulators as well as future therapies. We are now officially one of the only developed countries in the world to not provide these medications to our patients.


“Why our children are suffering when the rest of the world is celebrating is just incomprehensible, especially with a government that wants to end hallway medicine and save money. CF patients are literally taking up hospital beds and needing costly procedures when there is a medication that could prevent that.”


Mr. Speaker, as you know, this is the exact same issue I raised in this Legislature five years ago on behalf of another constituent, Madi Vanstone. While the medication Madi needed was eventually funded for her, the root of the problem was never addressed. Five years later, here we are again. Ontario needs to develop a rare drug strategy to fix this issue, and in the meantime Ontario needs to help those in need now by negotiating with drug companies like Vertex for these life-saving cystic fibrosis drugs.




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