What a week for cystic fibrosis dads

Here’s something I’ve learned in 15 years of being the father of a child with cystic fibrosis.  Fatalism has no home in CF nation.  It is the kind of disease that provides everyone affected with it – patients, parents, siblings, healthcare providers, scientists, policymakers – with constant opportunities to do something useful, creative, even courageous toward the cause of making cystic fibrosis less awful .

It is with that in mind that I consider this week’s news about two of my fellow CF dads.  One made a glorious exit.  Another covered himself in ignominy.

NPR made quite a fuss this week after sports commentator Frank Deford surprised his fans by announcing his retirement from public radio on Wednesday after 37 years.  The network paid tribute to Deford’s uncommon ability to convey the essential humanity that is the reason even the congenitally unathletic should care about sports.  But there was no mention of what caused Deford to be a writer of such wisdom and depth.

I think Frank Deford’s great insight and compassion comes from the fact that he’s a Gold Star CF dad.  His daughter Alex died in 1980 at the tender age of eight.  You can get the whole story in Deford’s book, Alex: The Life of a Child.  As you read this fabulous volume, consider that Deford did so much more for the CF cause than just share this intensely personal story with the world.  Deford served as the chairman of the Cystic Fibrosis Foundation from 1982 to 1999 and, to this day, is chairman emeritus.

Did this service make a difference?  Did it matter that Frank Deford was for all those years shaking down sports grandees and other luminaries for donations as he championed the cause of beating back this disease?  Hell yes.  In 1980, it was pretty routine for a girl with CF to die at age eight.  Now, thanks to the CF Foundation, we have unlocked the genetic and microbiological secrets of this disease and we are on the brink of reducing CF to the status of a curious medical footnote.  My daughter will outlive her dad in no small part because Alex Deford did not outlive hers.

That makes Frank Deford a hero.  The same will not, and cannot, be said of another CF dad – one Thomas Anthony Marino.

Tom Marino represents Pennsylvania’s Tenth District in Congress and is, to my knowledge, the only cystic fibrosis parent in either the House or the Senate.  Yet when a mere four votes provided the margin of victory this week for the American Health Care Act, Marino’s was among the 217 yeas.

As a mainstream charitable organization, the CF Foundation steadfastly avoids making enemies or looking partisan.  But the foundation did not mince words about what Marino and his 216 colleagues did.  “The American Health Care Act, as passed by the House today, is woefully inadequate for people with cystic fibrosis,” said Preston W. Campbell, M.D., president and chief executive officer of the CF Foundation. “The people who would be most severely impacted by this legislation seem to have been forgotten in the health care debate and we implore the Senate to do better for people living with chronic and life-threatening diseases, including people with CF.”

My blood boils as I recall the CF Foundation dinner I attended in Washington several years ago at which Marino spoke in his capacity as co-chair of the Congressional Cystic Fibrosis Caucus.  As he talked about his daughter Chloe, I remember thinking that, although I probably disagreed with Marino on many issues, here we found our common cause and our common humanity.

I guess not.  Marino even had the audacity to mention in his press release lauding his vote that he’s a CF dad.

Some may find this criticism unfair or at least ill-timed.  Earlier this week Rep. Marino withdrew his name from consideration as the next White House drug czar in the face of reliable reports he was about to get the nomination.  Marino’s announcement referred to a “critical illness” in his family. For all I know, Marino may be on the brink of joining the ranks of Gold Star CF dads.  

If so, that’s actually the opposite of an excuse.

There is a reason President Kennedy coined the phrase “Profiles in Courage” to describe members of Congress who summon the fortitude to do the right thing and cast the right vote when conscience calls.  I am with Paul Waldman of The American Prospect, who wrote:  “If there has been a piece of legislation in our lifetimes that boiled over with as much malice and indifference to human suffering, I can’t recall what it might have been.  And every member of the House who voted for it must be held accountable.”

No one should be called to account more harshly and more emphatically then Rep. Marino.  The CF Foundation should throw him right out of the CF Congressional Caucus.

There is quite literally a cost to everything Frank Deford and all of the other CF heroes have accomplished for families like mine.  Thanks to all of the new drugs and other treatments, a long adulthood with CF can be available to all – but staying healthy with CF carries a bill in excess of six figures in a good year.  I know this.  Tom Marino knows this.

In Frank Deford’s book about his daughter, an especially memorable moment involves the author delivering young Alex to the room where a surgical procedure was to be performed on her lungs.  At first she resists emphatically, but then says she is ready.

So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, "Wait!"  We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel’s touch, swept the tear from my face.”

“I will never know such sweetness again in all my life,” Deford wrote.  With such sweetness comes opportunities to do great things – to be heroes their their daughters and to other people’s daughters as well.  Frank Deford is a hero.  Tom Marino is not.