There is a huge misconception about Canada's health care system, and even most Canadians don't truly understand how it works, until they need to access services.
That said, I will focus my comments on just how the Canadian system works for people with CF.
Federal vs Provincial.
The federal government sets the legislation by which each of the 10 provinces and 3 territories must follow in the administration and delivery of health care. Aside from providing for "bill free" access to emergency services and doctor visits, everything else is optional and decided by individual provinces and territories.
I have lived in Ontario, Saskatchewan, Alberta, and British Columbia, so I can only speak to these provinces and their coverage for patients with CF.
I was only a child (under 18) in Ontario, and like many other provinces, children often have access to more health care than adults. As an adult in Ontario, I did not have access to many medications (inhaled antibiotics most notably). Until I was sick enough to have an infection, at which point PICC line, IV drugs, and home care was all insured and covered.
Ontario doesn't have any user fees or insurance premiums (aside from a line item on tax returns dedicated to an equal payment for all taxpayers to fund health care). Neither does Saskatchewan.
But Alberta and BC both have user fees for basic health care (Alberta recently removed the premium, but it may return).
I never had concerns with accessing prescription medications at any pharmacy in Saskatchewan. But there is (was when l lived there) only one CF clinic in Saskatoon, and I lived between 3 and 5 hours away by car; I could only afford to go to clinic a couple times over the 4 years I lived there.
Alberta has optional government insurance for prescription drug coverage. The premiums are somewhat affordable, and in geared to income. The co-pay caps out at $25 per drug, and prescriptions can be filled 3 months at a time. Careful planning will reduce the out of pocket costs. The downside is that the optional premiums cannot be purchased as an individual if you have a family: the family rates apply. There are only two clinics in Alberta; I didn't go to one of them, and I moved out of province to stop going to the other.
British Columbia has both health care user fees and a premium-free optional drug plan. The health care user fee ("MSP" = Medical Service Plan) is mandatory and geared to income and family size. I fall into the highest tier and have a bill of $144 / month. This fee provides ONLY access to a hospital and a doctor. NOTHING ELSE IS COVERED. The premium-free optional drug plan is often made mandatory by private insurance companies (policies provided through employment). It is very invasive of privacy and grossly outdated, as it is based on income tax filed from 2 years ago. Didn't file a return two years ago? Sorry. No drugs for you.
There is a LOT MORE red tape to also get insurance for CF drugs in BC. Far more hassle than I ever experienced in all of AB/SK/ON combined. I consistently and frequently go for months at a time without access to drug treatments because I cannot afford the pharmacy bills.
Some further comments:
The federal government has declared me as "disabled", but not the provincial government. I have gained access to reduced income tax rates and savings plans (through DTC and RDSP), but the province has not extended me such graciousness. My first year in BC, I didn't qualify for pharmacare, partly because the Clinic never registered me with the government drug plan, and partly because of incomplete paperwork and access to my tax return (privacy issues). So, no drugs.
My second year, my deductible (or rather: my out of pocket) was ~ $750 for the year. That's at least somewhat affordable, especially with enzymes at $3400 / month, Cayston or Tobi at $3000 / month, yada yada yada. But this year, my deductible quadrupled to $3000 for the year. YES! I didn't make a typo. The BC government calls it "Fair Pharmacare" and bases this fairness on family income. But somehow doesn't consider anything other than gross income.
Now, if the province decided I was disabled, all of these premiums and fees would disappear.
But why should I have to allow myself to become so ill and sickly, as to not be able to work (and pay taxes!), an not support my family, just so I can gain access to medications which would make me healthy enough to lose my disability status. ???!!???
The Canadian system is just as broken. It is not perfect. It's better than nothing. But there is a lot that could be fixed. Perhaps consistent access to therapies and drugs across all provinces would be a start.
Morgo: The CCFF does not pay a penny for anything other than research. I'm not sure where you got your information, but it is most definitely incorrect.