Too Much Time, Yet Not Enough

I feel like I'm spending months inside of much shorter time frames. Now that I've written that it doesn't seem to make much sense; but there's too much going on to have logically fit into the last two weeks and that's the only way I can describe it.


Two weeks ago I got a long awaited call from the hospital. The researcher had decided, that no - I was not going to be taking Kineret. For a reason that floored me, he told my doctor that the shots are too painful and patients tend not to comply for that reason. Just one sec here, has a word I've said even been heard? What about short term pain for possible long term gain? Doesn't he know that I'm one tough cookie?


I went to bed that night completely dejected. After all these long months of lobbying, the answer wasn't at all what I had expected. Despite taking my nightly sleeping pill (my leg and chest pain has gotten a bit much at nights lately, and it helps to take the edge off so I can get to sleep) I found myself staring at the clock at 4 a.m. not having slept a wink. I quietly crept downstairs to my office and spent the next two hours composing a letter to my doctors. A rational, unemotional plea to reconsider. What other options do I have right now? So many of the other drugs used for ECD can further complicate my cardiac condition so I really don't have much else to try.


When my husband woke up a few hours later I asked him to read the letter to make sure I was as lucid in the wee hours as I though I had been. He encouraged me in fact to put a bit more emotion in my words, to get across how devastating this decision felt.


A few hours after emailing my letter I got a call from my doctor. He'd spoken to the researcher and Kineret was back on the table. We're still waiting to hear if this is going to happen, but at least we don't have a definite no to deal with. And now it's back to being about funding.


Coincidentally, the Toronto Star published two articles in the last few days that really sum up our struggle to get access to off-label use of expensive drugs.

http://www.healthzone.ca/health/newsfeatures/article/894062
http://www.thestar.com/news/canada/article/894576--8-ontario-patients-in-need-of-500-000-a-year-drug-therapy?bn=1

Should I feel some comfort in knowing that I'm not alone in this battle?

Lots more to share about the last two weeks, but I'll save that for another day. But on the drug funding front, we're still waiting.