A resource for patients and their networks to GET LOUD for access to medications in Canada for cystic fibrosis patients. Speak up to help save Canadians with CF
Canada
Joined February 2020
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CF Get Loud retweeted
Brilliant to see @uaem supporting our calls for global access to @VertexPharma’s lifesaving #CysticFibrosis drugs.
Lifesaving drugs should never be a luxury for the few. 💊🌍
#RightToBreathe #Trikafta4All
CF Get Loud retweeted
Important to have a national Rare Disease strategy to help people with a rare diagnosis. Family of Ontario man with rare cancer faces $300K bill for treatment they feel will save his life | CBC News cbc.ca/news/canada/thunder-b…
CF Get Loud retweeted
Fabulous day of advocacy. #CFCantwait @fixthebrokensystem #OntarioRareDiseaseDrugProgram
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CF Get Loud retweeted
Great chatting with @BobBaileyPC @ONPARLeducation this morning. It was fabulous to know he remembered Madi and was looking forward to getting further involved in solving the issues still plaguing CF patients regarding access to modulators.#CFcantwait #OntarioRarediseaseprogram
CF Get Loud retweeted
Time to look for solutions Ontario, they’re out there!
#cfcantwait
Last week, I picked up my 14th refill of Trikafta - a drug that has changed my life - and for the 14th time, I didn’t pay a cent out of pocket. For 14 months, I’ve watched #CF patients in Ont continue to decline because they can’t afford their gov’s deductible #FixtheBrokenSystem
CF Get Loud retweeted
Madi and I are excited to continue the work we started with @mppjimwilson all those years ago with @BrianSaunderson. Our meeting this morning was fruitful and I we feel can work together to fill the gaps in our system. #CFcantwait #Fixthebrokensystem #OntarioRareDiseaseStrategy
For over 10 years, Beth and Madi Vanstone have been coming to Queen's Park to advocate the access of life saving medication for Canadians living with Cystic Fibrosis. @CFCanada
Thank you both for meeting with me. I look forward to working together.
CF Get Loud retweeted
So great meeting with you! Look forward to continuing to make Ontario more equitable for patients with #cysticfibrosis and other #RareDisease.
CF Get Loud retweeted
What a day! @CFCanada put together an amazing day of advocacy! Thank you to all who attended and continue to support the #CysticFibrosisCommunity @FranceGelinas3 @JohnFraserOS @MikeSchreiner @BrianSaunderson #CFCantwait #RareDiseaseDrugProgram #FixtheBrokenSystem
CF Get Loud retweeted
Thankyou @ChrisGloverNDP @NickelBelt @jamiewestndp for joining @CFCanada for breakfast and continuing the conversation about developing a #rarediseaseprogram
CF Get Loud retweeted
Pretty surreal feeling that life could start to change drastically today for this kiddo. Thank you so much to all our advocates and their tireless efforts to make this dream come true. @CFgetloud @CFCanada @VertexPharma #trikafta #November23
CF Get Loud retweeted
.@drfullertonmpp Create a program that provides equitable and affordable access to life-saving and life-changing drugs for rare diseases.#OntarioRareDiseaseProgram #CFCANTWAIT
#FixTheBrokenSystem
CF Get Loud retweeted
The cost of living is skyrocketing across Canada. Many can’t afford to fill both their fridge and their oil tank. Imagine ALSO dishing out 4% of your income to pay for medicine you can’t live without. For #RareDisease patients in Ontario, this is a reality. #FixtheBrokenSystem – at Lot 67, Prince Edward Island
CF Get Loud retweeted
Last week, I picked up my 14th refill of Trikafta - a drug that has changed my life - and for the 14th time, I didn’t pay a cent out of pocket. For 14 months, I’ve watched #CF patients in Ont continue to decline because they can’t afford their gov’s deductible #FixtheBrokenSystem – at Lot 67, Prince Edward Island
CF Get Loud retweeted
Some #Ontarians living with #CF can’t afford the high deductible to access their #RareDiseaseMeds others must leave private insurance plans to access. #FixTheBrokenSystem #OntarioRareDisease – at Lot 67, Prince Edward Island
CF Get Loud retweeted
Great meeting today! We appreciate the opportunity to sit with Noah and have our concerns be heard #cfcantwait #emmecantwait
Great meeting with Noah Ng, from office of @DrFullertonMPP discussing access and affordability issues for CF patients. Team @whoaNelly29 and Ron Anderson spoke of issues faced by patients and families with #RareDisease @CFCanada #Advocacy
CF Get Loud retweeted
Getting loud!
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CF Get Loud retweeted
Amazing day of advocacy with @CFCanada and some powerhouse advocates. So truly inspiring to be working with such a passionate and informed group. Looking forward to continuing the conversations @ONPARLeducation in the early am! Hoping one day soon we will be able to relax.
#RDDS
