I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: plugger on June 02, 2012, 07:45:28 AM
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I got the following email about AAKP's Hill Day on June 11th - I asked to go, but didn't make the cut.
(http://dialysisethics2.org/open_images/AAKP%20and%20DC.jpg)
But I thought this could potentially be a very important event, so I've been sending my 2 cents worth on what I thought ought to be brought up!
I was thinking others might like to do the same:
contact: Jerome Bailey, AAKP
jbailey@aakp.org
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As for what I had to say, been posting about it at: http://www.dialysisethics2.org/forum/index.php?topic=679.0
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What was the reason why you didn't make the "cut?"
I'm not exactly sure! I know when I first saw the email my knee-jerk response was "AAKP: dog and pony show - forget it.". We have had qualms with AAKP in the past: 1) I seem to recall they take money from the dialysis companies 2) They have been reluctant to deal with dismissed patients and left it up to us at DialysisEthics.
But I decided maybe I was being too cynical and I ought to give it a chance. I must admit I hemmed, hawed, and stalled before I contacted them. However, I am surprised they didn't pick any of our little group here in Colorado, the group that just recently successfully testified at two state legislative committees that got our tech bill renewed with overwhelming support!
Colorado House Health Committee
http://dialysisethics2.org/open_images/audio/coloradoga_02_21-2012_hearing.mp3
Colorado Senate Health Committee
http://dialysisethics2.org/open_images/audio/coloradoga_senate_2012.mp3
But I imagine they had a long list to choose from. However, I became concerned again when I didn't get an answer back from Jerome about more frequent dialysis which AAKP supports - I'm worried frequency might be increased, but time would be cut back to a point where any gain from frequency would be negated. Knowing the history of this field of medicine I could see this happening - I haven't got an answer back.
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I'm not exactly sure! I know when I first saw the email my knee-jerk response was "AAKP: dog and pony show - forget it.". We have had qualms with AAKP in the past: 1) I seem to recall they take money from the dialysis companies 2) They have been reluctant to deal with dismissed patients and left it up to us at DialysisEthics.
Despite their fundraising, AAKP provides a valuable service to those on dialysis.
As a national organization, they have respect on Capitol Hill —having testified before Congress over the many years on our behalf.
Sorry you didn't make the "cut."
You would have been an important addition.
8)
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Despite their fundraising, AAKP provides a valuable service to those on dialysis.
I suppose we all have our achilles heel. We have been accused of being ambulance chasers, fact is suing has been a last resort when we have dealt with people like Larry Hall (http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost). If you have seen the movie "Erin Brockovich", it is a lot like the scene where the lawyer Ms. Brockovich is working for admits he doesn't have enough firepower to take on the big, bad corporation's team of lawyers - he then finds himself a large, powerful firm. Our lawyer-friends know if they decide a lawsuit is warranted, they are in for a big fight - not something they always relish. In Larry's case davita was just asking for it.
Guess since we started out as an angry, frustrated organization - not surprising we found our lawyer-friends, glad it was good folk.
As a national organization, they have respect on Capitol Hill —having testified before Congress over the many years on our behalf.
I'll be hoping and praying it all goes well, but with all I've seen with this area of medicine I guess I still get a little jumpy.
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If you were curious what we were angry and frustrated about, our hearing with the US Senate back in 2000 might give you a glimpse:
http://www.dialysisethics2.org/index.php/Testimonials/us-senate-testimonals.html
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Today is the day AAKP went to D.C.. Guess we can hope and pray things went well.