| I'm glad you got the care you needed. Cleveland Clinic (in Ohio) is a superior organization. World class. They were one of our early adopter customers (when I was doing electronic medical records exchanges). Your story of having a rare (hard, difficult to diagnose) disease and not getting the care you need is the norm. This has happened to me many times. I suspect (Atul Gawanda style) the root cause is care providers are basically organic expert systems doing triage. They are taught to do their best and then move on. Do the maximum good with limited resources. Your fix was to find the care you needed. Do not accept No for an answer. Someone somewhere has the answers you need. You did the right thing. -- One of my besties got a terminal diagnosis, second opinion, third opinion. Decided he was too young to die, so he started looking at available clinical trials. Luckily, he exactly matched a trial for immunotherapy for his specific disease. He then found a superior doctor willing to support, manage his treatment goals, plans. Another one of my besties has advanced Lyme Disease. It's terrible. He moved across country to be near the 2nd best specialist, to better manage his care. He regularly goes to NYC to see the #1 specialist. Further, he is now something like an angel funder for early stage research. He has actually benefitted from these early results. My own story is similar. I had aplastic anemia. I've had numerous experimental treatments, first for the anemia and then for the subsequent side effects (GVHD). I'm a living miracle of modern technology. I have so many war stories (both good and bad), it's boring. -- Here's the thing. You, me, my two friends are not the norm. We're the outliers. Changing the payment system, insurance, whatever does not fix this problem. Perhaps teaching doctors to escalate is the solution. Perhaps connecting similar patients, by matching symptoms. Perhaps data mining. Apple's healthcare initiatives will certainly help (eg matching patients with trials). I keep asking everyone I meet for their ideas. Lastly, back to the point, Canadians spend less on healthcare, are healthier, and live longer than USA people. The Canadian system is superior. Simple statement of fact. |