My Brother Gives a Speech

Dan and I Hiking the Alps in 2005

  Today, I feel like the luckiest sister in the world.  As I sat in class, squirming in anticipation from a text from my brother, he was giving a speech to Congressman Waxman, and many other important people.  The speech was about how the Affordable Care Act has benefited our family in life-changing ways.  Finally, a text from him, "Wonderful," in response to my, "how did it go?"  A few minutes later I got to read his speech for myself and the idea that I had a truly extraordinary sibling was confirmed.  

    Here is his speech...

"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 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.

When I told her I was speaking about the Affordable Care Act she had one request for me. She wanted me to thank everyone who made the legislation possible, not because it helped insure her, but because it let her be a part of the country she lived in. It let her get a degree, and eventually get a job, pay taxes…and even volunteer. More than anything the Affordable Care Act let her be a citizen and contribute to the land that stepped up and took care of their own. Thank you Congressman for all you have done for my family. Thank you for giving my best friend, my sister, the most caring, and ambitious person I know, her life back and, as she said it, her citizenship back. The American Dream is attainable for millions more like my sister because of the work you did to pass this bill. Thank you. Thank You.Thank You."

Read more from Daniel Block at his Small Well Lit Blog.  

Read more about the event 

Brother and Me - slideshow with music