Jacob Jaramillo

chef, advocate, husband, dog parent, CF warrior
@CFGetLoud

[Hunter Guindon @HunterGuindon]

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

[Hunter Guindon @HunterGuindon]

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

[Tammy Strong @thetammystrong]

.@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 @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

[Danielle Weil @whoaNelly29]

Great meeting today! We appreciate the opportunity to sit with Noah and have our concerns be heard #cfcantwait #emmecantwait

[Danielle Weil @whoaNelly29]

Getting loud!

[beth Vanstone @bethdenniss]

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 @CFgetloud]

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

[CF Get Loud @CFgetloud]

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

[CF Get Loud @CFgetloud]

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

[CF Get Loud @CFgetloud]

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

[CF Get Loud @CFgetloud]

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

[callum @callumxoxox]

Pierre Poilievre has apparently deleted the campaign video these screenshots are from (https://t.co/NWenWGqGgA)

but I’m hoping @TheHillTimes still has it kicking around. This is really important. At least tell us what he’s doing please😭

[Hunter Guindon @HunterGuindon]

I will never stop shouting this from the roof tops!

[Jill Srigley @JillSrigleyGolf]

So it begins. Thank you to everyone in the Canadian CF community for being so vocal and fighting for so long, so we can finally have access to #Trikafta @CFCanadaWestern @CFCanada @CFgetloud

[CORD @raredisorders]

Great discussion on Day 1 of our CORD Fall 2021 Conference. Thank you to our wonderful presenters and participants for joining us. #Canada4Rare
Final Agenda:https://t.co/HSlxTi2Jrk

[Canadian Cystic Fibrosis Treatment Society @CFAdvocacynow]

We have so much to be thankful for. Here's our message in December. We've realized the promise of access to life-saving cystic fibrosis medicines in 5 provinces. There's work to do to get every CF patient access, but this weekend we give thanks for how far we've come. #CFcantwait