1. Before I start I’ll mention what led up to my wanting to get involved legislatively. My then 18-year old daughter was in a fresenius clinic in Colorado back in 2000 for six months, and shall I say I was less than impressed with what I was finding out about things like reuse (which my daughter was on until I complained) and the clinic’s lack of use of crit lines. I was shocked that techs came in with no medical background. As Deborah Hayes - who I mentioned in the previous post testified: “Would you trust the brakes on your car to a mechanic who had picked up a wrench two weeks ago!”. Not sure when I found out techs could be nationally certified – and weren’t required to be, but I do recall finding that also quite upsetting. The topper was the mortality rate at the time:
30 year mortality history etc... Not only was I upset, but also freaking out! I was quite vocal about what was upsetting me in the clinic (though I may have kept the mortality rate under my hat). It came to a head when the charge nurse dragged me into her office after one of my questions and informed me there had been a meeting about me (huh?), they had decided to allow my daughter to stay in clinic and they would “learn to put up with me”. I remember thinking they can do that? And for what, asking questions!
I mention this because the threat of terminations and blackballing is still very real today and a person might consider how their clinic would react before undertaking this sort of endeavor. If a person wants to know about blackballing and terminations I would suggest listening to the Marti Oakley shows with Arlene Mullin and Dialysis Advocates.
2. Anyway, after my daughter got her transplant, that was about the time I could unzip my lip even more and started writing letters-to-the-editor and my state legislators about what was going on with kidney dialysis. My current state rep at the time wasn’t answering my letters and I found I agreed a lot on other issues with his opponent - so I volunteered for my state rep’s opponent, a fellow by the name of John Kefalas. Anyway, I would go door to door with John looking for votes. In between houses I would tell him what I was seeing in kidney dialysis. We both agreed this field of medicine needed at least techs who were certified or licensed - and from there a bill was born.
3. Deborah Hayes, another dialysis patient by the name of Starla, and Lorene (a retiring fresenius dialysis nurse) came on board after Deborah saw one of my letters-to-the-editor. We also had NANT involved (National Association of Nephrology Technicians - believe they are still around) - can’t remember who found them. And I believe it was State Rep. John Kefalas who wound up getting the Colorado Hospital Association’s endorsement and found a patient who caught hepatitis from a dirty dialysis machine. We also joined forces with a kidney patient support group based in Denver, George Bravdica the president, and Archie Jones from Black Transplants wound up also testifying for us (both dialysis patients).
4. It was pretty clear sailing through a state house committee and the state house floor, but then we hit the state senate committee. Davita shows up with a clinic manager, a pct, and patient. The davita people talk about how everything is sunshine and lollipops in davita land and they don’t need a stinking bill. I’m sitting there thinking this is a load of crap, we get of committee but it is only by one vote! Felt like we came in loaded for bear and they had a pea shooter. But hey, a win is a win right! After that my state senator made it a cake walk on the state senate floor, a fellow by the name of Bob Bacon. And then Governor Ritter signed it.
5. We then had a bill renewal in
2012 - a cake walk. This year davita and fresenius came on board and backed the bill. We got through the statehouse without a single nay vote. If you want to hear audio from the hearings we testified at, here is a link:
http://ihatedialysis.com/forum/index.php?topic=35038.msg529445#msg529445Looking back on it all it feels like a miracle the way everything fell together for us. Wondering if there might be people out there ready for their own miracle.