Top Tweets for #CfGetLoud
It was wondeful to meet and congratulate Pickering resident and founder of @CFgetloud, Stephanie Stavros, on earning a King Charles Coronation Medal in recognition of her work with Cystic Fibrosis Canada.
#CFGetLoud #KingCharlesCoronationMedal
@ChrisMRiches @libdemdaisy @taranixie @SteveBarclay @Daily_Express @DHSCgovuk All eyes on @SteveBarclay 👀👀👀
"The Health Secretary has been urged to act by his Lib-Dem rival after failing to respond to an ill patient’s desperate lifesaving plea."
#CFGetLoud #cysticfibrosis #livelifegivelife
@873Meredith @taranixie
Who can afford a lifetime of paying for this volume of medicine?
Please sign the PETITION⬇️
https://t.co/YfoBOTdebZ
#cysticfibrosis #health #trikafta #kaftrio #cfcantwait #cfgetloud #cflife #patients #family
Gov reply to making cf patients pay for prescriptions “There are no plans to make changes to the list of medical conditions which can give an exemption from prescription charges, exemptions are in place to help those with greatest need”.@GOVUK who exactly needs them more then?
They need everyone to sign the petition for access to #Trikafta and other CF modulators.
PETITION LINK
https://t.co/5tk5wBHFVL
#trikaftaforall #trikaftajá #trikaftaparatodos #trikaftanow #cfcantwait #cfgetloud #breathe #health #cysticfibrosis #fibrosisquistica #kistikfibrozis
Right to breathe takes precedence over company profits: Families of cystic fibrosis patients seek access to life-saving drug in face of company intransigence
https://t.co/fDj0KxR3A2
#trikaftaforall #trikaftaparatodos #trikaftaja #health #breathe #cfcantwait #cfgetloud #hope
There are still some #Ontario families falling through the cracks. Having to choose between cost-prohibitive #Trillium deductibles and putting a roof over their head or food on their table, Ontario families deserve better.
#cfgetloud #cfcantwait #canada4rare
Some of the largest corporations in Canada refuse to cover life-saving #cysticfibrosis medicine, #trikafta
This leaves the government paying MORE to save rare lives in Ontario. If public payers approve a meds, private payers should HAVE to cover it. #cfgetloud #canada4rare
With food scarcity issues rising in Ontario, rare disease families are needing to choose between paying high-priced government deductibles to access life-saving medicine, or putting food in the table. There NEEDS to be a path for rare here. #cfgetloud #cfcantwait #canada4rare
8 out of 14 Canadian jurisdictions fully fund #Trikafta with no co-pays deductibles. Ontario’s #Trillium Drug Program has the 2nd highest deductibles in the country. Ontario used to be the leader in #cf care. Now, we are falling behind. #cfgetloud #cfcantwait #canada4rare
We spoke to a #cf parent today that has to sacrifice dental care & mental health services to gain access to a life-saving cystic fibrosis medicine. Parents shouldn’t have to decline private insurance to gain access to #trikafta through public funding. #canada4rare #cfgetloud
Back at #queenspark tomorrow to GET LOUD for #CF families in Canada. We need a pathway to access #raredisease medicine in Ontario. #cfcantwait #canada4rare #cfgetloud
How can #VertexPharma justify pricing Trikafta at $311,000 when it can be profitably produced for LESS than $6,000???
@VertexSaveUs @JustTreatment @strawfie #livesb4profits #livesb4profit #trikafta #trikafta4all #health #muco #vertexsaveus #CFcantwait #cfgetloud #greed #BigPharma
CFTR modulators could be produced via generic companies for a fraction of current list prices.
One strategy based on previous success is originator-issued voluntary licenses.
⬇️
https://t.co/y9UhwU9QFz
#trikafta4all #kaftrio4all #cfcantwait #cfgetloud #breathe #cysticfibrosis
CFBites#12: Having CF changes you.. slowly.. physically and mentally.. u lose urself.. ur confidence.. ur social life.. ur ability to feel normal feel included.. its hard for others to see this specially when no body knows what CF is #cfgetloud #cfawareness #cysticfibrosis
If you have been declined by the insurance for Trikafta and could share with me the company name please message me. Speaking with media in the am. The provinces stepped up for patients, which does not give private insurance an out-to deny coverage. #cfgetloud #trikafta
My final pre-Trikafta baseline test was today!! 🎉
I’m hopeful this is the last time I’ll walk out of the QEH with lung function numbers in the 60% range 🤞
Here’s to a new lease on life!
#CFGetLoud #TrikaftaToday
Trikafta has been added to Manitoba formulary!! We did it! Proud moment for the Cystic Fibrosis community. We will keep fighting until the territories have access. Go team go! No one left behind! #trikaftatoday #cfgetloud #cfcantwait
@HunterGuindon @CFCanada @CFAdvocacynow @ErnieHudsonPEI @karlabernardmla @AltassTrish @peterbevanbaker @GordMcNeillyPEI @beaton_michele @dennyking And you Hunter! It would've never been possible without your fierce and determined advocacy efforts.
Today, we are celebrating with you and the rest of the island!
#CFCantWait #TrikaftaToday #CFGetLoud
Amazing news! Come on Manitoba, people living with Cystic Fibrosis are counting on you. Thank you @AudreyGordonMB for your commitment and hard work. #trikaftatoday #cfcantwait #cfgetloud
@CFCanadaWestern @CFCanada @kgroverto @JeffreyDBeach @ChristyThomson_ @CFCanada_Yukon @CFCVictoria @KinCanada Always near to my heart. Our dedication and advocacy is paying off. #cfgetloud #cfstayloud #endCF
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