[nFBMI-Talk] Luxturna: "How Much Is Your Eyesight Worth To You?"

Kane Brolin kbrolin65 at gmail.com
Thu Jan 25 15:44:01 UTC 2018


Ever wonder why the National Federation of the Blind isn't all about
curing blindness?  Got an extra $850,000 lying around, burning a hole
in your pocket? https://www.youtube.com/watch?v=YOJ7KBa6qVg

The video piece linked above, which a friend sent me just this week,
points to a brand-new genetic therapy that apparently has the chance
to work only in the case of a certain, rare, inherited eye condition
called biallelic RPE65 mutation-associated retinal dystrophy.  The
"cure" for this condition is a bargain, though, as at one time the
price tag was estimated to be $1,000,000; but it's currently available
for the remarkable sale price of only $850,000.

As an investment professional, I have been taught that markets move up
and down based on our collective approach to the alternating impulses
of fear and greed.  The ingenious part of Luxturna seems to be that
executives at Spark Therapeutics, the company responsible for
developing it, thinks it's figured out a way to profit from both
impulses at the same time.   They can satisfy their greed by
capitalizing on the fear of blindness felt by their intended patients.
http://www.chicagotribune.com/news/opinion/editorials/ct-edit-medical-miracle-20180104-story.html

How many blind people could attain real dignity and independence if
the $850,000 spent to "cure" just one patient suffering this rare
disorder, were to be given to the National Federation of the Blind  or
to various great educational institutions and training centers which
properly serve those who are blind from any cause?  And how many
people who just take a surface look at Luxturna will still walk away
with the mistaken impression that somebody has finally developed a
"miracle cure" for blindness?

This enormous attempted misappropriation of resources is a great
reason why we must continue to educate the public at all levels,
demonstrating that blindness is to be adapted to and not to be feared.
Blind people are not broken sighted people.  It's respectable to be
blind.

Respectfully submitted,

Kane Brolin




More information about the NFBMI-Talk mailing list