Senators Shaheen and Hassan:
Thank you for the opportunity to testify today in my capacity as the proud father of my smart, accomplished, ambitious and healthy 15-year-old daughter Rose, a kid who also deals every day with a life-shortening chronic illness: cystic fibrosis.
Rose is an equestrienne, a math whiz, a big sister, a social activist and also someone who has to spend two hours a day on various therapies designed to fend off the effects of her CF. Then, all night long, Rose is wired up to a pump that gives her supplemental nutrition through a PEG tube – basically, a surgically created orifice in her belly.
Still, we are blessed. In 1980, the late sportswriter Frank Deford lost his eight-year-old daughter to CF, because back then we didn’t know how to treat the disease. Deford went on to help lead the Cystic Fibrosis Foundation and today the Foundation is the most successful healthcare charity in the universe. Thanks to the therapies and treatment protocols the Foundation has developed, I have every reason to believe I will never experience what Frank Deford experienced – a dad burying his daughter.
Cystic Fibrosis is the quintessential preexisting condition – in a good year, with no hospitalizations, it costs upwards of $100,000 to treat CF. Rose just found out this week that this isn’t a good year – she’s likely to have to spend some time in the hospital this summer to chase out the opportunistic bacteria that like to ruin the lungs of CF patients.
So, without the Affordable Care Act or something a lot like it, my daughter is uninsurable. Maybe she can get as job with health insurance, but then there’s the problem of lifetime benefit caps.
The CF Foundation has unlocked the genetic and microbiological secrets of this disease, and now it is asking CF parents like me to urge senators like you to save the Affordable Care Act. For a mainstream charity like that, without a partisan bone in its body, to take a stand like that is, to paraphrase Joe Biden, a big deal.
Indeed, it’s a big deal for me to speak at a forum like this. I’m an appointed state official who would like to be re-appointed, and the way to do that is to stay out of politics. But I am first and foremost a loving father, and I have a conscience that does not allow me to remain silent. The healthcare bill pending before you is cruel and unconscionable, and in the name of every dad who has ever lost a child to a chronic illness I urge you to consign this bill to oblivion.