Monday, January 12, 2015

Week 73: Dear sir

My maternal grandmother was famous for cancelling her subscription to the New York Times periodically, when it ran an article she didn't like or when its coverage of the Martha Stewart case got on her nerves.  I've been reading the Times for most of my adult life, and it took until now for the paper to publish a piece that so infuriated me that I considered taking my grandmother's corrective action.  Ultimately, I decided that a more productive approach would be to respond with a letter to the editor.  You can read the infuriating opinion piece in question here:

There are so many things wrong with opinions expressed in this piece that I hardly knew where to start, and the Letter to the Editor format only permits 175 words.  So, here is my best effort, submitted to the editor this evening:

Dear Sir,

Although diseases like cystic fibrosis are individually rare, in aggregate rare diseases afflict nearly 1 in 10 Americans.  Thus, the recent contention by Llewellyn Hinkes-Jones that "researching extremely rare diseases may also represent a misuse of public and private funds" defies moral logic.  Nonetheless, rare diseases pose a significant challenge: developing treatments is expensive, and the resulting treatments are costly. 

Mr. Hinkes-Jones’ “solution” of increased taxation of the wealthy to grow federal research budgets, followed by price controls on the resulting drugs, represents pie-in-the-sky thinking of the highest order.  Those of us with loved ones suffering from rare diseases hardly have the time to wait for federal bureaucracies to attend to our ills.  The venture philanthropy approach vilified by Mr. Hinkes-Jones represents a proven model that can drive the development of urgently needed medicines in the here and now, without detracting from other publicly- or privately-funded research efforts.  

To the Cystic Fibrosis Foundation, whose visionary work has already extended my son’s life expectancy from 5 years to 39, I have only two words: thank you.  

Mama Bear


  1. Wonderful letter. I've been following the 'funding for CF & the CF Foundation' story in the news. Will you please let us know if your letter gets published?

  2. It looks unlikely that my letter will get published--the New York Times already ran two replies. But the story has been picked up elsewhere in the media and it looks like most opinions are coming in on our side! See next week's post.