Crystal

Dog mom x 2 🐶🐶 Traveler 🌎🌍🌏 CF Warrior 💪🏼 The opinions and views shared on this platform are my own and not the views of my employer.

[Crystal @ckent_1982]

@PremierofNL @TomOsborneMHA Let’s get Trikafta added to the provincial formulary for 6+ immediately. Also, let’s get the less than 90% FEV criteria removed for all patients ASAP!

[RARE innovators @RAREinnovators]

👏to #Ontario & @VictorFedeli for today's #LifeSciences strategy - a huge step 👉 stronger economy & innovative health system for all of us in the rare diseases community - here's a short message from RAREi Chair @BobMcLay @RareDisorders @lifesciences_bc #Canada4Rare #ONPoli

[Crystal @ckent_1982]

List price and beer price are two different things! Tell the full story.

[PMPRB_CEPMB @PMPRB_CEPMB]

Canadian list prices were 4th highest among 31 Organisation for Economic Co-operation and Development (#OECD) countries, lower only than prices in Switzerland, Germany and the US. 2020 #PMPRB Annual Report: https://t.co/Fxjbb6Jpvl #cdnhealth

[Crystal @ckent_1982]

@mhdksafa Yes….many!

[beth Vanstone @bethdenniss]

I support the implementation of Canada's Rare Disease Drug Strategy @CFgetloud @CFAdvocacynow @CfAdventurers @ALSAction @JessesJourney Please share with your followers. We are stronger together. https://t.co/LJUBYkE1b0 #Canada4Rare #saverarelives #support via @raredisorders

[Canadian Cystic Fibrosis Treatment Society @CFAdvocacynow]

regulations. We again want to thank @miriamclouthier and @IMKLLP for their outstanding counsel and all the advocates who supported us in this important fight which was a win for all of Canada's rare disease patients. 3/3 #cdnpoli #CDNhealth #CFcantwait

[Canadian Cystic Fibrosis Treatment Society @CFAdvocacynow]

of Appeal case against the federal government's regulatory approach and guidelines over patented drug pricing. The Appeals Court agreed with arguments presented by the Canadian Cystic Fibrosis Treatment Society to strike down two key provisions of the @PMPRB_CEPMB price 2/3

[Canadian Cystic Fibrosis Treatment Society @CFAdvocacynow]

“The decision is important because it gives pretty clear guidance to the federal Parliament about the limits of its powers to legislate in relation to patents.” Great interview with @IMKLLP's @miriamclouthier who represented us in The Quebec Court 1/3

https://t.co/CFh2P5zpgO

[kgrover @kgroverto]

And next Canada

[Crystal @ckent_1982]

@Johnrockdoc @PremierofNL why is it taking the NL government 4+ weeks to approve #Trikafta prior authorization forms when it take only 2 days in provinces like Ontario & Nova Scotia? The wait in NL is unacceptable. Prioritize Trikafta like other provinces have!

[Crystal @ckent_1982]

💯

[Hunter Guindon @HunterGuindon]

On today’s list of irrelevant statistics…

The @PMPRB_CEPMB has an anti-rare disease patient bias, and they’re seemingly proud of it.

[Crystal @ckent_1982]

@PMPRB_Watch @jyduclos Every time the @PMPRB_CEPMB tweets they blame and attack the unfortunate individuals who are unlucky in health. My heart sinks whenever I read one of their heartless tweets.

[Crystal @ckent_1982]

@PMPRB_CEPMB Your tweets truly sadden me b/c they sound like you are blaming those unlucky 5% who require expensive precision medication to live. Perhaps you should consider changing the tone of the message so you don’t come across so cold and cruel? Or is that your intent?

[kgrover @kgroverto]

It is the time and has been the time. People living with rare diseases like cystic fibrosis don't have time to wait. #cfcantwait

[Crystal @ckent_1982]

This is unacceptable! No one should have to make a choice between life-saving medication and shelter or food! Life-changing meds should be provided at no cost to the patient!

[Hunter Guindon @HunterGuindon]

2/3 My deductible is ~$8k/yr. Many CF patients will now have to decide if they’ll buy their life-saving medicine, or pay their rent. @nsgov announced today that they’ll be covering the cost 100% - @InfoPEI you’re next, right?

[Crystal @ckent_1982]

Congratulations Nova Scotia!
@Johnrockdoc when will we see an announcement like this for #Newfoundland?

[Crystal @ckent_1982]

@HunterGuindon That’s amazing Hunter!