My first child was born with a rare birth defect. Almost all children who had the same defect had been diagnosed when autopsied. We lived where there was a large cluster of children born with this defect, so the hospital was able to diagnose his illness. Had he been born at most any other hospital, he would have died.
We had some insurance, but as students, we could not afford his expensive new medication or his many visits to specialists, let alone the hospitalizations. Luckily, at that time, there were state funds, federally supported, to help sick children. There was no way we could have paid for it all.
When I heard about Jaime Herrera Beutler’s baby, diagnosed with a rare birth defect, I naturally followed her progress with interest and empathy, hoping for a good outcome, as ours had been.
Through previously untried treatment before the baby was born, through hospitalizations in four states, through the many long nights and days of sitting by the bedside of a sick baby, till finally she could receive a kidney transplant more than 2 years later, our thoughts turned often to the Beutlers.
It’s wonderful that the insurance our tax dollars provide to members of Congress yielded such a happy beginning to a little girl’s life. She was, after all, the first with this condition to have survived more than a few hours. Jaime must know how expensive that care can be. We believe our son’s care, 50 years ago, ran to the tens of thousands. The bills for Jaime’s daughter, her true “miracle child," must have been more than a million dollars.
I appreciate that Jaime was willing and able to help when another’s child needed specialized medication. I appreciate that she was willing and able to help when another well-known constituent needed treatment across state lines, and Jaime could get the insurance company to cover it.
But we shouldn’t need to contact a congressional representative to get medical care!
Throughout her time in the House, Jaime Beutler has voted to destroy rather than improve our access to affordable medical care. One of the very few votes she was willing to leave her daughter and return to vote for was just such a bill.
Each of us is potentially one hospitalization away from bankruptcy. Each of us is potentially one deep breath away from a life-threatening disease — as long as all of us can’t get medical care when needed.
We all know this because we see it around us, every day. We all know it because we read about it, hear about it on the news, every day.
We are able to make sure that everyone gets the help needed — babies, the elderly, those with special needs, those with pre-existing conditions, those who suffer an unfortunate accident, those who are healthy (at least at the moment) — together, we can do it, but we need leadership in Washington D.C. to pass the laws that will help us.
Carolyn Long knows what it is to lose a loved one due to a lack of affordable care. Her mother was more afraid of what medical bills would do to her family than she was of her disease.
I think it’s time to say goodbye to Mrs. Beutler.
I think we need Carolyn Long in the House.