I’ve been thinking a lot about charities for the part few
days. It would be fair to say I have been obsessing, as I am wont to do
sometimes in my half-Aspie way (that joke is much better out loud than
written down).
It all started when I wrote about Jerry Lewis recently. One of the
commenters, Ben Mattlin, had an interesting perspective, and he and
I got into an e-mail conversation. I love it when people challenge my preconceptions and make me think. Not that I will be out protesting a telethon
anytime soon, but Ben’s contention that Jerry and the MDA does not represent
him got me thinking.
Whom do charities serve?
And is “research” really all it’s cracked up to be? Ben thinks not. Read his perspective here and here.
Welcome back (good stuff, eh?)
But despite all that, I still fervently believe in research (Sorry, Ben). Research is
what will eventually save lives. It wasn’t until just these past couple of days that I realized that
for MD, all research is not necessarily equal.
I think I naively assumed that all research is created equal, and all goals are the same. They are not.
My initial training in Muscular Dystrophy was at my friend’s dining room table. Her son, Robbie has MD (Becker's). She
explained it simplistically but accurately that the body does not produce
enough (or any) dystrophin, which stops the muscle breaking down. The
broken-down muscle is then replaced by other tissue types; fat or connective
tissue. My thoughts on hearing the Dystrophin thing, turned
immediately to the parallels with Juvenile Diabetes. My stepbrother has Type I
Diabetes and he does not produce insulin, so he takes synthetic insulin, which
is not a perfect solution (synthetic is not as good as natural, and the whole
timing thing is fraught), but it stops him from dying, so we kind of like it.
I think I assumed that the MDA would be focusing their
research on a similar approach. Find a way to produce and deliver synthetic
dystrophin (and related compounds) so people would stop dying –at least until
they find the “real” cure, the genetic engineering miracle that will rescue all
those with (all forms of) MD. The MDA is not doing that. They are going long-term (the genetic route),
not short-term (the synthetic dystrophin route). Personally, I would have chosen
a two pronged approach. Maybe the ultimate cure would take a little longer, but fewer people would die waiting for it.
Because let’s face it: choosing the long-term option as the
only focus is a bit of a bummer for those already living with MD, who are trying to stay alive; those “kids”
with a shortened life expectancy, like Robbie.
Now, in fairness: Maybe the MDA did explore the synthetic
Dystrophin route at some point and that line of research failed for some reason . I don’t know. I know their
research history goes back a ways on their web site, but not decades. And nobody likes to advertise their failures (except maybe me, but I'm strange).
The MDA detractors point to the fact that the organization has
been in existence for almost 60 years, funding research all the way, and no
cure has been found. Yes, research takes a long time. But 60 years and NOTHING?
In a disease which kills many people at a young age? That seems to point to a
lack of dedication or urgency. Or both.
I must say, I did wonder about that.
So I started looking at what research the MDA is actually supporting? Quite a lot of stuff, actually and much of it
looks quite promising, although it seems to be true that no lives have actually been
saved by MDA-funded research.
There is this work, mostly funded by the MDA. And this discovery
But then I searched on Duan Dongsheng and I found a
patent application for his groundbreaking discovery, which was presumably funded by the MDA, but the
application is in his own and his colleagues' names, which got my thoughts racing in a different
direction…
…and I got to thinking about the logistics of the whole
charity-funded research thing…
You know, researchers don’t do all this out of the goodness
of their hearts. Sorry to tell you, but it’s true. Maybe some do, but most are
looking for that breakthrough, which they can then patent, put into a drug and
then retire, rich; preferably with a Nobel prize or two to decorate the den and a funny story about Swedish food.
Does the agency that funded the research that led to the
breakthrough get some kind of discount on the finished product? I strongly suspect not.
So how might events unfold?
- Jerry
Lewis hosts a telethon, pulling at people’s heartstrings to donate their
hard-earned money to find a cure for these “poor kids”
- Kind people
donate money to help the “poor kids”
- The
money goes to research
- Many,
many years (and many “poor kids”) later, a breakthrough is finally made
- The
researcher patents the resulting drug (or procedure/ treatment) in HIS (or her) name
and then retires to live off the royalties. The new drug costs a King's ransom.
- The
“poor kids” have to pay through the nose for this drug, which had been funded
for them by the kindhearted people in TVland.
- If the
“poor kids” or their families don’t have good insurance or otherwise can’t
pay for the cure, they will probably have to petition the MDA to help them.
- Jerry
Lewis hosts a telethon to buy the new-but-horribly-expensive “miracle drug”
for the “poor kids” for which the MDA funded the original research…
(You may think I am very cynical. Yep. A pretty thorough grounding in business will do that to a girl.)
Of course, #7 and #8 are speculation (and let’s face it, the
Jerry Lewis in #8 would be very old indeed!). However, I don’t think I’m that far
off the mark. Time will tell, of course.
So the kindhearted people in TVland are not actually paying
to help the “poor kids”. They are actually paying to make speculating scientists rich. Yes, other people will
benefit from the rich scientists’ innovation(s) (if any), but I have a feeling that was
not what the kindhearted people signed up for. And yet, none of this is wrong
or illegal. It’s just the way big business works. I can’t even say “caveat emptor”
because nobody actually bought anything,; -except perhaps a sob-story and maybe some hope.
The money donated effectively goes into a black hole for the charity to use as
it pleases.
Does the patent-holder have any responsibility to serve the
charity that funded his research? Not
unless they came to some sort of terms beforehand, and I don’t believe anything
like that would be divulged, even if it happened (which I doubt). And anyway, the patent-holder will either sell or license
that patent to a drug company. The drug company will manufacture and distribute
the drug. The drug company, who has no obligation or affiliation with the
charity, will control supply in the marketplace. Therefore the drug company
can pretty much charge what the market will bear.
And let’s face it. We are talking about “dying children”
here –no less than “Jerry’s Kids” themselves. I imagine the market will bear
quite a lot.
So the “kids” could ultimately be made to pay more because
of the MDA’s success.
Mad, eh?
...but regardless, I'm still not dissing the telethons and Jerry. The MDA had over $37,000,000 to spend on research programs in 2007 (and only a 9-month "year"!). You know how much Conquer Chiari had? $140,000. I think it is better to have more money than projects, than to have more projects than money. ASAP has funded only 10 small research projects in 10 years.
As a person with Syringomyelia, I am kind of jealous of the MDA's resources when compared to some of "my" charities.
BTW, if you want to compare and contrast charitable organizations:
Frida put me onto a great site called Charity Navigator, that
rates charities, but mostly only the big ones for now. (thanks, Frida BTW)
