E-Newsletter

This week I went to the Senate floor to share with my colleagues the story of an extraordinary young man from the First State. In any given week, this Delawarean overcomes more adversity than most of us face in a lifetime. His name is Michael Davis.

Michael is a 14-year-old incoming freshman to Middletown High School. Last month, I had the opportunity to sit down with Michael and hear about what his life is like living with cystic fibrosis. But before Michael and I even talked about his pre-existing condition, we found out that we share the same passion—running.                              

Despite his lung condition, Michael defies the odds that life gave him. In fact, he has become quite an athlete. Earlier this year, along with my son, Christopher, Michael completed the New York City Half Marathon. That’s an astounding feat for any athlete, but it’s an extraordinary accomplishment for someone like Michael.

Michael’s doctors said the best way to describe how it feels for Michael to run is to imagine breathing through a straw as you’re running a race. He was born with cystic fibrosis, a genetic disease that causes a thick buildup of mucus in the lungs and other organs. That mucus can clog airways and trap bacteria that leads to infections, lung damage and, in the worst cases, respiratory failure.

Michael sees the doctor every eight weeks when he’s feeling well, but more frequently when he’s sick.He wakes up every day at 4:30 in the morning to use a high-frequency chest wall oscillation device called “the Vest.” It helps to break up the mucus in his lungs and he continues to use "the Vest" several times throughout the day. Michael takes over 40 medications each day.

Just last week, Michael received national attention when he was named the Boomer Esiason co-athlete of the year. He’s not just coping with his condition—he’s thriving, and running circles around the rest of us. He serves as an inspiration to us all. We in Delaware are so proud of Michael.

The fact is that access to treatments and medications are really a matter of life and death for people with cystic fibrosis.That’s why Michael and his family are very scared about what the future holds. They hope we in Congress can do the right thing to protect people like Michael with preexisting conditions.

The legislation that some of my Republican colleagues are working on behind closed doors would remove the Affordable Care Act (ACA)’s protections for preexisting conditions. Before the ACA was law of the land, patients were at the mercy of insurance companies to decide who gets coverage, what that coverage includes and how much it costs. Not today.

We can’t go back to the days where people like Michael could hit their lifetime limit for health insurance coverage by the age of three. We can’t go back to the days where families could go bankrupt because their child was born with cystic fibrosis or any other condition.It’s up to those of us here in Washington do the right thing by Michael, the more than 150,000 Delawareans and 52 million people across the country who have preexisting conditions.

In the coming days, I ask that you share with me your thoughts on how we can improve the Affordable Care Act, how it has impacted your life and why health insurance coverage matters to you at www.carper.senate.gov/healthcarestories, or by email at healthcare@carper.senate.gov.