Living with cancer in Ontario: the good and the not-so-good

Posted by northoftheborder @northoftheborder, May 22 11:43am

It's never easy being sick anywhere, but I thought I'd share the good and the bad about my cancer journey here in Ontario. As long as I was in hospital (3½ months), it was easy — I just showed my provincial health card once on admission, then everything was covered by universal medicare, right down to meals, prescription drugs, physio, OT, laundry and even psychotherapy. I'm guessing I cost the system between CA $500K and $1M with all my treatments and care at the Canadian equivalent of a "Centre of Excellence," but I never had to pull out my wallet unless I wanted a snack from a vending machine.

After I was discharged, it became more complicated. Homecare is based on physical need and means-tested, and since I was economically well-off, could dress and feed myself (albeit from a wheelchair) and didn't live alone, I qualified for only a few months. Physio to learn to walk again was partly covered by my spouse's private work benefits, but it didn't cost much (relatively speaking) anyway.

Canadian provinces don't have universal pharmacare yet (you have to be under 25, over 64, poor, or receiving Homecare to qualify for the Ontario Drug Benefit), so once I stopped receiving Homecare, I had to start jumping through hoops to keep getting the Erleada prescription (CA $6,000/month) to control my cancer. It was never at risk because I'm in the manufacturer's patient-access programme and Ontario has a last resort called the "Trillium Drug Programme" that covers expensive drugs with a maximum co-pay 4% of your family income (which the manufacturer would have reimbursed), but I couldn't get that until my spouse's private insurance through work said they *wouldn't* cover it, and the private insurer took a long time to decide, so the patient-access programme at the drug manufacturer kindly covered it and did most of the paperwork to help me through the process.

Then my spouse got laid off last December and got a new job 3 weeks later — with the same insurer — and it took six months for that same insurer to decide again to pay for my Erleada. 🤷

Again, I was never at risk of losing coverage and having to pay $6,000/month out of pocket — I had multiple layers of safety nets — but parts of our system work smoothly and parts don't; it's just different parts than you experience down there in the U.S. Here you're better off as an in-patient in hospital, because there's virtually no cost or paperwork; it's once you're back home as an out-patient that some of the challenges start for peripheral stuff like medication and physio (though medical procedures and appointments remain free).

Meanwhile, my private disability insurance also kept me jumping through hoops for two years filling in more and more pointless reports (no, my stage-4 prostate cancer HASN'T gotten better yet, thank you), though at least they did keep paying me my monthly partial disability benefit (I am still able to work part-time). They've finally gotten the message, especially after a sternly-worded letter from my family doctor telling them to stop bugging me and wasting everyone's time.

Basically, it's easy dealing with the public system, but as soon as private insurers get involved (either for drug benefits or disability payments), it becomes a bit of a bureaucratic nightmare.

Interested in more discussions like this? Go to the Cancer Support Group.

hbp | @hbp | May 22 11:58am

Better than USA, not as good as English or French. Getting medical care certainly can be a pain in the ass!

parrot53 | @parrot53 | May 23 5:28am

Thank you for sharing. Our US system is in need of revision because so many cannot afford to get the care they need.

gisellef | @gisellef | May 23 7:18am

In reply to @parrot53 "Thank you for sharing. Our US system is in need of revision because so many cannot..." + (show)

It is a problem regardless of place of residence. However, Ontario is not representative of Canada as a whole. Each province is better/worse as far as aspects of care are concerned. We can’t cross provincial borders to access the best cancer care available; there are many systemic barriers in place— wait lists for diagnostics, lack of clinical trials and doctors not up on the best treatment options before you are enrolled for the “free in hospital treatment “, much higher tax rates, often no available second opinions. That is not to deny that some patients get what they need at little out of pocket costs. It’s just that it depends on where you live in Canada and it appears that more patients than ever fail to be diagnosed in time for life saving treatments to work. We don’t really have a national healthcare system to speak of and do not share a common experience. In that we are no different than what seems to be happening in the USA. Care is becoming more and more expensive and fairness in cost sharing difficult to define.

Helen, Volunteer Mentor | @naturegirl5 | May 23 7:24am

@northoftheborder Thank you for sharing your journey through the medical system in Ontario and with private insurance. I have dual citizenship (US and Canada) and have exerienced the health system in both countries. I didn't have any serious medical problems when I lived in Québec but I did have enough interaction with the medical community to decide that I liked that everyone had access to medical care. Not so in the U.S. and even with the so-called public medical entitlements through Medicaid and Medicare when private insurance gets involved it's a terrible mess.

northoftheborder | @northoftheborder | May 23 3:52pm

In reply to @gisellef "It is a problem regardless of place of residence. However, Ontario is not representative of Canada..." + (show)

Yes, very true. In Canada, provinces have primary responsibility for healthcare under the constitution, just as U.S. states do under the McCarran–Ferguson Act. In both cases, the federal government exercises "soft power" by providing subsidies contingent on meeting certain requirements, but as is often the case with federated countries, there's not really a uniform national system.

As for waits, delayed diagnostics, etc we hear about similar problems in the U.S. here in the forums: people are sometimes getting very different levels of care and treatment, depending on whether they go to their insurance provider's local "in-system" (do I have that right?) providers or travel to a "center of excellence" that knows about the latest research and treatments.

stevecando54 | @stevecando54 | May 23 3:58pm

I understand I should do research in stead of "assuming" things but for now it's okay. I live in the states, go for treatment every month, and take daily meds. I still work (69) and have what seems good health insurance. I take Abiraterone, the insurance company lists as $4700 which I pay $5.00 a month. I do enjoy my job and look forward to going to work every day. I just wonder how I will afford everything when I go on Medicare, of course I'm not sure how long I want or can continue to work. It's in the back of my mind it's cheaper to keep working. I have stage 4 prostate cancer and up until this point all of my treatment has been out patient. I don't understand how some people have to deal with the cancer and worry about paying the cost. Best to all.

eileen11108 | @eileen11108 | May 24 8:03am

In reply to @stevecando54 "I understand I should do research in stead of "assuming" things but for now it's okay...." + (show)

Steve,
Starting next year seniors only have to pay a yearly max of $2,000 out of pocket for drugs.

When you retire I advise you to take Medicare and a supplement. You would have an open enrollment period. After that time you would need to go through medical underwriting. Medicare Advantage plans sound wonderful but are known to not approve some things.

Best wishes, Eileen

chrissiebee | @chrissiebee | May 26 9:07pm

I can only speak for myself but I'm happy to be getting my medical treatment in the United States. I have excellent medical insurance, a PPO along with Medicare Advantage, and it's an ESA (extended service area). My former employer I worked at for ten years provides the insurance. I pay a small amount for the Medicare portion which is deducted from the small pension I receive from them for the ten years. I get my prescriptions at no cost unless they are not generic and then I pay $3 for a three-month supply. I have had four cancer diagnosis, one was a metastasis, and three separate types of cancers, endometrial, breast and bladder. I should not even be alive except for the outstanding medical treatment I received for the metastasis in 2002. My out-of-pocket costs are so minimal and my medical care is with the top medical facilities in California. I was able to get diagnosed, have two surgeries for the bladder cancer, and one-year of chemotherapy all during the years of Covid. I hear so many U.S. citizens complaining about our medical system. I have friends in Vancouver and in England who tell me of their experiences with medicine and there is no way I would change places with either of them. No one has what can be considered a perfect system to treat their citizens but as far as what I've experienced, I am thankful to get my treatment here in the U.S.