A Bigger Forum

We wondered what, if any, reaction there might be to Nicholas Kristof's NY Times column on Sunday. The response was a little overwhelming. When I walked into the choir room for rehearsal on Sunday, it was being discussed. A friend heard about from a friend who saw it in Copenhagen. Friends of a friend read about it in New York. And of course it spread rapidly and virally on Facebook.

I could not resist reading the comments on Mr. Kristof's blog. Most of his audience approved and thanked him for sharing our story. A few called us "stupid," "ignorant," "negligent" among other things, but that's to be expected. Most were ignorant of the effects of PKD or the realities of dialysis and transplant. The moving fact is that 12% (33 out of 277) of those commenting had issues relating to the relationship of diagnosis (preexisting conditions) to insurability. The 33 broke down as follows:

• 16 were related to PKD
•  5 were related to other kidney disorders
•  2 were related to disclosure of HIV
•  5 were related to other diseases
•  5 were related to other private insurance issues

Of the PKD related issues, most were families just like ours, parents with PKD reluctant to have their children tested; siblings with parents with PKD, frustrated by their inability to help.


All of this feedback was very reassuring. I felt very exposed as we went out on this limb with Mr. Kristof. We were sure of ourselves but we didn't really know how many others there were who shared our concerns. Evidently quite a few and the response was gratifying. The column was certainly noticed and seized upon by individuals active with groups such as the PKD Foundation, fighting to find treatments and a cure.

The big surprise came early Monday when CNN called. Evidently they wanted to interview Kristof on Monday, but he wanted to do it Tuesday with us. So yesterday was a day of massive communications, arranging logistics, and making arrangements. They arranged cars to pick us up and get us to the studios and to take Travis all the way to Stony Brook for his class. We did screening interviews. I prepped by taking Anthony, my drum prodigy nephew to see Jack White and his new band, The Dead Weather. Always best to go on national TV exhausted, slightly hungover and hearing impaired!

The interview went smoothly. The David Letterman story was OUR lead in story! (Dave and Dave, Back to Back.) Travis and I each got in a couple of sentences, but it was Kristof's show. We were just pawns in his game, but we knew that going in. Travis was on a real set in New York with Kristof. I was remote from a small room on the 15th floor of building in downtown Dallas on a stool in front of a Dallas morning backdrop with lights, a camera and sound plug in my ear. An observer would hear nothing, then I would speak, then silence, then I would speak again. End of drama. Out the door, down the elevator, into the waiting limo and back home.

But I think we made a splash! The PKD people seem to be thrilled with the exposure and want to put our story on their website. It was extremely courageous of Travis and Michael to put themselves on the line, especially Michael in light of his diagnosis.

I hope it proves to have been worth the risk and effort and that meaningful health care reform is accomplished.