I’m a Canadian with a rare and chronic cancer of the brain stem. I was diagnosed in 2002, had a golf ball sized tumor removed from my nasal passage and, after a suitable period of recovery, was sent to the proton radiation clinic in Loma Linda, California, where I experienced both the good and bad aspects of the American care system for three months.

More about that shortly, but first a bit about my experience in the Canadian system. My diagnosis came about after experiencing significant sinus problems over a period of six months. After an initial consultation and round of antibiotics my GP referred me to first, an allergist and second an ENT specialist, all paid for by our Medicare system. By the way, I choose my own GP and my GP decides who to refer me to.

My condition was fairly urgent, so my wait was minimal – a few weeks at best. The ENT guy felt a CT Scan was necessary, so I had one. Again, a short wait because my condition was medically urgent.

That’s how they discovered the chordoma that filled my nasal passage and turned me into a mouth breather. And it’s when the system went into high gear. I was scheduled for surgery, prepped with a number of MRI scans and operated on within about 4 months. The wait was based on the fact that the tumor is very slow growing and doesn’t metastasize.

The tumor was removed, I recovered and my oncologist, neurosurgeon and ENT guy determined I should undergo a schedule of proton radiation treatment to reduce the chances of a re-growth. To this day it’s about the only treatment that adds to the life expectancy of chordoma patients.

The only problem was that there were no clinics in Canada. My closest option was Loma Linda Hospital on the eastern outskirts of LA. Out of country treatment must be approved by our “Medical Services Commission”, based on medical need and treatment options. Because there was no other treatment option I was approved immediately. The cost was in the range of $150,000.

That year I spent a lot of time on the two or three discussion boards for chordoma patients – there is no foundation or research organization. And a big topic of discussion – most of the chatters were American – was how to pay for treatment, particularly proton radiation.

A cranial chordoma is a rich person’s disease. Surgery is rare and expensive, life expectancy is low and the radiation follow-up, which can extend life, is horribly expensive. At that time there were only four facilities in the Americas offering it.

The biggest topic of discussion besides “how long do you think you’ve got to live” was keeping your insurance on the hook for the three-month plus schedule of treatments. The uninsured weren’t even players.

I spent three months at the proton radiation outpatient clinic in Loma Linda. I paid my living expenses. Canadian Medicare paid for my treatment, no further questions asked.

I can’t say the same for the American patients, who generally fell into two groups: Older, wealthy men who were being treated for prostate cancer and the brain patients. During the day the clinic doubled as a support group meeting space. There was always a jigsaw puzzle going and the older guys watched the progress of the Iraq war on a very loud TV tuned to Fox. The brain patients spent their time organizing trips, on the web and using the free phone line to call their families and their HMOs and insurance providers to beg for extensions.

There is no other way to describe those calls. They begged and begged. On the discussion boards I found out how hard it was to get treatment approved. At the clinic I found out how hard it was to get treatment continued if you relied on an insurance company or HMO to pay.

Anyone who says there is no rationing in the American system is a liar. The system is full of rationing, but unlike the Canadian system the criteria for entry is not the state of your health, the criteria in the American system is the Insurance industry’s profit margin. They ration treatment in order to boost profits. There is no other explanation.

After my 40 plus treatments were up and I went home I continued to correspond by email with a number of fellow patients: A woman from Nova Scotia; a guy from LA who was misdiagnosed by his chiropractor; a woman from Texas, a free enterpriser through and through, who’s husband made his living by trading stocks on his computer. Dodgy by my standards but a star by hers.

I traded emails with my Texan friend for about a year. She was one of the people who spent a lot of time on the phone with her insurance company. Eventually she left early. She hadn’t been able to persuade them to pay for the full treatment regime.

After a year or so, my emails went unanswered. That’s not unusual for chordoma patients. The survival stats aren’t great and it’s why I’ve given up on the discussion boards – too many abrupt departures. But patients who’ve been through the radiation treatment are supposed to have better outcomes. My Texan friend didn’t. She only got half the treatments she needed and she was insured. I don’t know if the outcome would have been different with a full regime but I do know her private insurer made sure she’d never have the chance to determine that.

I’m lucky. I’ve had three tumor recurrences, all small, all caught by my medical team, all paid for by the Canadian Medicare system. It’s tough enough to be catastrophically ill. I am so lucky to live where I do, with our single payer, “socialist” Medicare system and not have to deal with the madness that is American private insurance.