Wednesday, August 15, 2012

Is This the Kind of World We Want?

We're working with a family with two boys with Duchenne muscular dystrophy (DMD).  One boy is enrolled in a clinical trial for a drug called eteplirsen, manufactured by a company called Sarepta Therapeutics and he's doing great.  However, the other boy is non-ambulatory, so he's not qualified for the clinical trial, and he continues to decline.  We've spoken to the drug company about a single-use IND, which the FDA gives for investigational drugs on a one-time basis.  However, they say they don't have enough of the drug available, and they have a lot of other families who want the drug.  The family is torn apart, happy about how one child is doing but devastated as they watch his brother decline knowing there's a drug out there that could help but the drug company won't allow it.  What a world we live in, where parents have to watch a child fade despite the fact that there's a ready solution.  You can read more about this family's courageous struggle here

In this world, hospitals find ways to profit for the private equity firms that bankroll them, even if it means bilking Medicare of millions of dollars, without regard for what's best for patients.  In this world, we have to keep fighting for health care for seniors -- a fight that should have ended decades ago.  In this world, political battles are fought with lies that do nothing but scare the American people.  Somehow, it's become completely okay to flat-out lie to the American people -- for example, this ad accuses the Independent Payment Advisory Board of rationing health care when, every single day, insurance companies already decide what care you're allowed to have. 

In this world, too many of us question our moral obligation to care for the very poor.  But we can't even have a civilized discussion about what kind of society we want to be -- it all just unravels into name-calling and baseless attacks.  Meanwhile, people suffer terribly -- children, who are poor through no fault of their own, who we abandon in the name of cutting budgets.

We need to have a serious discussion here in America.  People are hurting.  What obligation do the "haves" have to the "have nots?"  Is it fair to tax people who earn more at a higher rate?  Is it right to make sure everybody has access to health care, no matter their circumstances?  Are we willing to make sacrifices for the good of us all?  Or is it every man, woman and child for themselves?  You know my answer -- I'm willing to sacrifice my own interests for those of others.  It would be impossible to listen to the tales of loss and fear and illness that I hear every day and not be prepared to do whatever I can to help.  Is it just that those who are out for themselves don't have the same exposure to the tragedies that lurk in the shadows of America?  Because if that's the issue, I invite them to come sit in my chair for a day and see how they feel about the virtue of selfishness after that.  Jennifer

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