Here is my edgy view…

The healthcare industry is what it is in the United States. How’s that for profundity?

We’re not going to change the fact that everyone wants their share of the healthcare dollar to make a buck. However, my reaction to the CEO of United Health Insurance getting shot at point blank range really shook me up. Let me just say that there no tears shed in this household on that day. The level of cynicism and rage that I hold inside was a telltale sign that I needed to change something. (We had literally just received a third denial from them on that day, denying an MRI for my wife who had spent a month in bed from back pain.)

So, we’re starting a series of discussions here and on our Rare Candor Podcast called Shenanigans in Healthcare. I wish it was an easy discussion, full of Caveman-like black and white villains and heroes ; “Me no like Big Pharma, Big Pharma bad” or the other side “Capitalism saves the world, money always good. All praise to the All Mighty Dollar
”.
Uh. Yeah. Nope.
I think the real reason to have these discussions is to look at all of the angles, as many as possible – so that then we are informed and can put together our voices to make changes to the systems in place. As opposed to, say, rejoicing when a greedy person gets popped in the head. When meeting with and testifying to Congressional staffers last year, I would always end my little speech with “I don’t mind if the rich get richer – as long as the sick get better.” I think I still mean that – it’s just that I don’t see the sick people with rare diseases getting better at the same rate that the fat cats are getting exponentially fatter.

Something’s gotta give – so that’s why we’re here to facilitate those conversations to change the systems that keep people with rare diseases sick and in pain.

Pam