Jacob Jaramillo

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

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

.@drfullertonmpp Create a program that provides equitable and affordable access to life-saving and life-changing drugs for rare diseases.#OntarioRareDiseaseProgram #CFCANTWAIT #FixTheBrokenSystem

.@stephaniebowman 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

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

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

Getting loud!

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

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

Pierre Poilievre has apparently deleted the campaign video these screenshots are from (hilltimes.com/2021/08/11/mp-…) but I’m hoping @TheHillTimes still has it kicking around. This is really important. At least tell us what he’s doing please😭

I will never stop shouting this from the roof tops!

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

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:bit.ly/3d4XaWE

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