Where Our Health Care Fails

In some ways I may be a special case but many can relate to
relentless battles with our healthcare providers. The refusal to allow
drugs we need simply because of expense, regardless of necessity, is
something insurance companies inevitably turn down without foresight.
Medical providers make a paltry effort on our behalf to appeal insurance
denials, then throw up their hands and return to us to continue a fight
we seemingly can’t win. The advent of new laws restricting pain
medication in attempts to stave off addiction, has left those in chronic
pain finding it harder and harder to receive medications they so
desperately need. Sadly it seems, our care is only getting worse, no
matter how much you pay, no matter how reputable the doctor, no matter
how many hoops you jump through. The bottom line is money coupled with a
misguided attempt to save those with addictive tendencies from
themselves. Yet those who live in chronic pain have been swept up in
good intentions gone awry.

I suffer from a rare disease called
Achalasia. Because of this, the muscle between my stomach and esophagus
had to be cut open. In normal esophageal function the muscle between
the esophagus and stomach opens and shuts when food travels down the
esophagus then into the stomach. We eat by gravity and force food down
with liquids because the nerves in the esophagus have been destroyed and
that muscle is uncoordinated. Without surgery, Achalasia sufferers are
unable to keep food down.

Acid has now made it’s way up to my
vocal chords. This condition if not controlled has serious
consequences. The acid can cause irreversible damage to my vocal chords
so I could permanently lose my voice and it can cause me to develop
Barrett’s Esophagus, a precursor to esophageal cancer. It is causing
damage to my esophagus where I would either have to have a gastric
bypass or eventually have the esophagus removed all together. Yet the
medication dose my surgeon wants me on, the insurance company has
refused due to FDA recommended dosage. The shortsightedness of our
insurance companies is blinding and it all comes down to a Capitalistic
system out of control. Here they could approve my medication or pay for
major surgeries later, since their way hasn’t worked. Yet their
determinations are based on dollars spent now with no concern for what
is being done to the patient or foresight to future procedures if left
improperly treated!

We know this is being felt by so many,
including those not in the rare diseases communities. So the question
is, what can be done to stop big business from running our healthcare
and to put the patient first?


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