Monday, January 19, 2015

Week 74: Hot stuff

On the downside, it looks like the New York Times won't be running my letter.  On the upside, they did run one from Dr. Robert Beall, President and Chief Executive of the Cystic Fibrosis Foundation.  If I were petty, I might point out that they gave him 262 words, 87 words more than the guidelines say would be allowed.  But I'm not petty, I'm glad they ran his letter.  It is in large part due to his leadership that we have the famously expensive Kalydeco (the first drug that treats the underlying cause of CF), as well as numerous much less famous drugs and therapies that have nonetheless been essentially in achieving an eight-fold improvement in the length of patient's lives over the past six decades. You can read his letter here.

The opinion piece also got some attention from Forbes.  Perhaps not terribly surprisingly for a business magazine, they don't have much of a problem with venture philanthropy.  And, the author of the piece seems much more in touch with how drug discovery actually happens than the author of the New York Times piece: the NIH and other government agencies fund basic research, largely at academic institutions, that make the underlying discoveries that enable drug discovery.  But, the NIH and the institutions it funds are simply not equipped to carry out drug discovery and testing, which is where private industry steps in.  How does the NIH feel about having these fundamental discoveries used as the basis for the development of new medications?  Let's see what Francis Collins, director of the NIH and co-discoverer of the gene for cystic fibrosis, thinks about the CF foundation using venture philanthropy to generate new medicines based on his discovery (quoting from the Forbes piece): "a dramatic example of risk-taking that has paid off in a remarkable way."  You can read the rest of the Forbes piece here.

Enough on venture philanthropy for this month!  We are soldiering along here through our second Wisconsin winter.  I am told that there was actually a bit of a January thaw this weekend, although sadly I didn't really make it outside to enjoy it.  Lemon came down with some sort of virus on Saturday, and basically needed to sit on my lap in a semi-stupor all day.  By evening his temperature was 102F, so we called the pediatrician, who said to give him Tylenol and to be on the safe side bring him to the ER.  But, for us, the ER (especially on a Saturday night) hardly feels like a safe place--who knows what kind of disease-ridden college students will be lurking there?  Since Lemon was aware, responsive and well hydrated, we decided to just go with the Tylenol and see what happened.  We gave him a dose right before putting him to bed, and checked on him a few times during the night.  His temperature dropped down quickly and never came back up, thankfully.  He was still clearly not feeling well on Sunday and refused to eat anything thicker than diluted fruit juice, but by this morning he was back to his usual self, except for his appetite, which was still pretty marginal.

It's amazing and frustrating as the parent of an underweight kid to watch those precious ounces just melt off.  72 hours with little to no food and I feel like all the work we did in the last month or so just evaporated.  Our next weigh-in is a week from Friday, so we will be on an all-out hidden calorie blitz in the next week or so to try and get things at least back to where they were, so he won't fall any further off his curve.  Then maybe in February we can open a discussion about getting back on the curve, where we were in, oh, November or something...

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