MadisonBettle3 karma2021-06-08 17:40:04 UTC
Thanks Julie! I know about the $500 million, but it's separate from having a Rare Disease Strategy as well as the Patented Medicine Price Review Board (PMPRB)'s recent communications plan where the organization - overseen by the Liberal government - is spending $50,000 on attacking patient groups (accusing them of "disinformation") for merely advocating on behalf of their patient groups. There's too much overlap between the PMPRB and the pCPA, which again wastes more Cdn taxpayer dollars. If the PMPRB changes (set to come into effect July 1) occur, Trikafta (even if approved by Health Canada at the end of this month) may be prevented from entering the Canadian market. When we do speak on the phone, we can discuss this in more detail :). Looking forward to it! And I look forward to getting more involved in the Davenport community.
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MadisonBettle2 karma2021-06-08 16:23:44 UTC
Hi Julie. Thanks for doing this. Been living in your riding for almost two months now. Glad to see you being interactive. I am still awaiting your phone call (you/your office said it would happen last week) to discuss Cystic Fibrosis, Trikafta, and the PMPRB spending taxdollars on attacking patient advocacy groups :). Hope to hear from you soon.
I am generally for UBI, but am curious how it will affect other government spending (ie. Health care). Will the government be investing more in the social determinants of health?
In terms of rare diseases, do you support the creation of a Rare Disease Strategy? Canada is the only developed country in the world without one. Will you also consider addressing the PMPRB changes and ensure that life-saving medication (like Trikafta) does come to Canada? Patty Hajdu has not given straightforward answers about this and I would be grateful if you could address the House with these concerns.
MadisonBettle1 karma2021-06-08 17:13:05 UTC
Well she tweeted directly at me saying she was going to call me, so until I know 100% that will not be the case, I intend to follow up and hope for the best :).
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