When I was 16 I watched my 19-year-old sister, Emily, have a
stroke right in front of me. This was only the second of three she eventually
survived. In a matter of seconds I watched as a genetic condition manifested
bringing her from the competitive soccer player I knew to someone barely able
to get out of bed. Over the next five years I watched as my family too changed
from a comfortable middle class family to one solely focused on the health of
my sister.
My father continued to work as an engineer and my mother
still worked at her physical therapy clinic so we could pay the bills, but all
our free time went into figuring out what was happening to Emily. At the time
she started getting sick the healthcare system, a system that was in place just
a few years ago, seemed to be working against us.
As that first year pounded ahead in a constant rush of
hospitals, doctors, and false hopes she started to rapidly approach the age
limit at which my parents health insurance would kick her off. Eventually Emily
had to withdraw as an honors student from Cal Poly San Luis Obispo in the hopes
that becoming a full time patient may help us find a cure before she was deemed
unfit for insurance.
Another year passed and she made great progress, we
confirmed a diagnosis of Ehlers-Danlos Syndrome, but still I saw as her
enthusiasm for life started to waver. This diagnosis would mean she would need
to frequent hospitals the rest of her life to receive IVs. As it stood she
could not do anything physically demanding, she could not get a real job, and
she needed constant medical attention. Even if she went back to college,
received a degree, and got a job, no one would insure her. She could never
receive the healthcare she needed to live a real life.
This was the state of the healthcare system before the Affordable
Care Act. This was how patients, with undeserved conditions, were treated. My
sister is an economic pitfall because she is sick with no known cure. She does
not make economic sense to treat. Before the Affordable Care Act this would be
the end of the story for my family. Too bad. Better luck next time. Some lose,
some win. These were the only words of comfort we ever received.
And then a bold congress, pushed forward by some great women
and men, decided that we were better
than this as a country. My family sat glued to the TV as we watched the role
call vote for the greatest piece of social legislation since the Great Society.
And together we watch as it passed. And in that moment it passed I saw my
sister receive her life back. With the passage of that bill, we witnessed
healthcare becoming about health again.
From now on my sister could not be denied coverage just
because she needed help. This meant for the rest of her life there was a path
in front of her and a government beside her to help her walk it. She went back
to college, graduating with a degree in kinesiology and with honors to boot.
I called her two days ago to wish her a happy 24th
birthday, something that would have been tragic a few short years ago. We
couldn’t talk long because she was rushing to her grad class at Tufts University
in Boston. She is now going for an advanced degree in Occupational Therapy with
strong hopes of finding both a job and insurance. Insurance she thought she
never could get. And insurance that will allow her an IV once a week that can
keep her standing upright and working.
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