Friday, May 15, 2015

Mr. Green Goes to Lansing

     On February 26th of this year, I was honored to be invited to speak at Michigan's first officially recognized Rare Disease Day at our state capital.  While Cystic Fibrosis itself is not considered a "rare disease," my experiences with insurance coverage offered a vision of what could be if legislation like the bill we were there to advocate for was passed.  It would not have made Children's Special Health Care Services, the insurance that has kept my life with CF (including the transplant) free from crushing medical debt, available to all of its childhood recipients through adulthood.  However, it would be an important step toward making the financial lives of those who suffer from a rare disease less of a struggle.  My four minute speech was much different from many of the other stories, which were often raw displays of the frustration that naturally comes with raising a child with a chronic illness, especially as it concerns medical bills.

     The video's audio quality leaves something to be desired, as it was filmed on my phone in the Rotunda Room at the Capitol.  As you will see,  it is a less than ideal venue for public speaking, as evidenced by the people talking and the impromptu seven person parade which goes by during my speech.

The full text of the speech is included below the video:

     I first want to thank Mrs. Frew for inviting me to speak here today, and also thank everyone in attendance for giving your attention to such a worthy cause.  Today, I am here to represent a vision of what every patient with a rare disease and every parent raising a child with a rare disease would like to see.  Since the time I was diagnosed with Cystic Fibrosis at three months of age, I have qualified for Children’s Special Health Care Services insurance.  My father has worked for the same employer for my entire life, but they frequently changed their insurance.  No matter what plan they had, my Children’s Special Health Services insurance covered the entire cost of the numerous maintenance medications I was on, as well as any antibiotic treatments or hospital visits that were necessary.  Though I did not fully realize it until I qualified for free lunch in high school, my family did not have much in the way of extra money.  If my illness had forced us to face any significant medical costs, I shudder to think what my life would be like today. 

     When I became 21 years old, I was able to continue utilizing Children’s Special Health Services insurance.  CSHCS covers over 2,600 medical diagnoses, but only people with Cystic Fibrosis and certain blood disorders are allowed to continue using it into adulthood.  When I was hired at Canton High School in 2004, my wife and I had fabulous insurance through the district and made enough money that the cost of retaining Children’s Special Health Care Services insurance no longer made financial sense.  However, when my health deteriorated significantly a little over two years ago, it was simply a matter of filling out some paperwork for me to resume coverage with CSHCS.  I waited a year for a double lung transplant, during which Children’s Special Health covered all of my oxygen needs, medications, and hospital visits.  The time on the waiting list was stressful, but concern over how much this life saving procedure would cost was not a factor.  I finally got the call last summer, and the surgery and my two week in-hospital recovery went as well as I could have hoped.  Since the transplant in August, I have been on a litany of new medications, many of which have a several thousand dollar per month price tag.  Just as when I was in high school, Children Special Health Care Services insurance saved my family from unthinkable levels of medical debt.  About one month ago, an itemized bill for the cost of the transplant finally arrived in the mail.  Between insurance from work and Children’s Special Health Services, the over 500,000 dollar procedure cost me $27 out of pocket.  With all the steroids the doctors have me on, I might be hungry enough to spend more than that on lunch at Clara’s later today.

     Although there is no magic wand that would suddenly expand Children’s Special Health Care Services insurance to cover all of its recipients beyond their 21st birthday, Senate Bill No. 1083 represents progress toward ensuring that families do not suffer financially while they already deal with the complexities brought about by a rare disease.  I am not more deserving of a life free from the fear of medical debt merely because I chose a career that offers excellent insurance or because I have a disease that is somewhat more common than the ones which have affected the other families here to speak today.  Being able to focus on living one’s best and healthiest life, with minimal attention paid to the issue of dollars and cents, should be a reality for everyone.


  1. I could listen to you speak 24/7. So proud to have you represent those of us that depend on CSHCS. Thank you so much Evin!!!!!!!!!

    1. Thank you so much, Wendy. I think you are becoming my blog's #1 fan! I hope to have more opportunities to speak and do those supporting me proud in the near future. :)