Thursday, 25 July 2013
Just a Spoonful of Sugar
Not to put too strong a point on it, but I love my specialist. His discussions with me are direct and unflinching, but couched in warmth and compassion. Every patient deserves to feel that white coat (or not) on the other side of the desk is your advocate - even when the answers don't come easy or are hard to hear. We've come to a place where the road forward is pretty clearly defined, but the timing less so. When we met this week, among the topics of our conversation was our mutual dislike of big pharmaceutical companies and the gauging that takes place when patients are at their most desperate. Case in point, he suggested that if I was "independently wealthy" (which I am not!) I could take a medication that costs $1000 per month to help control my phosphorous levels, as the simple calcium supplements haven't been working. There are other options, including surgical intervention to remove the parathyroid glands that are are causing the problem in the first place, but we aren't at that point now. Still it is a stark reminder that even in our generous public health care system - somehow the profiteers still find ways to make a buck - with add-ons that just seem out of reach. When I worked in the health ministry we had many cases of patients advocating through the media for coverage of new, experimental or prohibitively expensive medications that were not covered through our provincial drug plan - and they always inspired heated discussions. I always wondered why people directed their vitriol at the ministry when these stories would emerge instead of the drug companies who were holding the patients for ransom - often by starting them off on free samples for a year or so and then cutting them off when they were entirely dependent. Often these drugs were for conditions so rare that no reasonable research exists to prove whether they actually work as adequate sample sizes just don't exist. Still the political pressure in these cases is enormous and the drug companies never seem to take the heat. As a patient, it is natural to want to find the latest pill to take your symptoms away but in my experience, some pills are simply too hard to swallow.