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Author Topic: A Letter to President Barack Obama - The Ten Point Plan: Renal Patientís View  (Read 6245 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: March 07, 2009, 12:30:19 PM »

A Letter to President Barack Obama and Health Secretary Kathleen Sebelius
The Ten Point Plan: Renal Patientís View on Healthcare Reform for People with Chronic Kidney Disease
by the Renal Support Network

to read it go to http://rsnhope.org/
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Zach
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« Reply #1 on: March 07, 2009, 12:35:32 PM »

I think there are some typos in the presentation.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Bill Peckham
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« Reply #2 on: March 09, 2009, 09:29:56 AM »

I think there are some typos in the presentation.

8)
?
I couldn't find them
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
paul.karen
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« Reply #3 on: March 09, 2009, 10:20:14 AM »

Sadly the presidient will never read or see this.
he didnt even read HIS stimulus package that Pelozi wrote.

All we can do is cross our fingers and hope he does us right by his Health Care Plan.
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Bill Peckham
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« Reply #4 on: March 09, 2009, 11:11:41 AM »

thanks for the PM Zach - It might be a symptom of an underlying problem that the letter didn't engage me to read it closely (or maybe I haven't been able to read anything too closely lately).†

I understand the thinking behind the letter. I think the letter could have made a stronger case by focusing on three action items - Medicare CKD Reimbursement Reform; Create, fund and cede power to a Kidney Patient Quality Committee; We need quality data that is meaningful, transparent, audited and based on independent research.

Three is always better then ten unless you're David Letterman.
« Last Edit: March 09, 2009, 11:14:46 AM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Bill Peckham
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« Reply #5 on: March 09, 2009, 11:18:58 AM »

I don't think I was clear that I think the objectives are good and I am saying that we should advocate for the same objectives - the narrative would be how they would be addressed by the three action items.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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