Somebody had linked to this article about frustrated parents funding researchers to study their children’s rare diseases. Now, I am a big proponent of crowdfunding. I believe in paying artists for their work.
That being said, this concept of essentially crowdfunding medical research bothers me some. According to the article, it costs between $500,000 and $1 million annually to run a lab capable of carrying out this type of research. So essentially, only those sick children lucky enough to be born to wealthy parents (or those able to raise those sorts of funds) get the benefit of these researchers’ time and efforts. If you are poor and/or don’t have access to those kinds of resources, you are outta luck.
Furthermore, what about those of us with rare diseases who are not children. Not only am I not wealthy enough to hire my own researcher, I don’t have the big heartstring-tugger of being a child. The underlying message this seems to be sending is that at a certain point, I “aged out” of having such resources available to me. Yes, having a child with a rare disease is heartbreaking. No question. But eventually many of them turn into adults. Where’s the crowdfunding for them?
Perhaps I might feel better about this if the article came across as saying that all parents of children with GAD could benefit from this. but instead, it seems to reinforce F. Scott Fitzgerald’s apt insight that the rich are not like you and me.
[EDIT: And of course, right after I finish this post, I come across this article on crowdfunding scientific research, which seems to present a very good argument in its favor.]