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Author Topic: AAKP Notice is Disturbing  (Read 2455 times)
Whamo
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« on: June 20, 2012, 09:50:37 PM »
First, the good news.  The Beverly Hills company that developed portable kidneys you can wear is testing them in Seattle.  They weigh 10 lbs and use a catheter for access.
Now, the bad news.  Medicare is changing the way it pays for dialysis, bundling drugs and treatment together.   Evidently the high drug costs for Epocrit drove this decision.
Everyone can look forward to becoming anemic?   
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jeannea
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« Reply #1 on: June 20, 2012, 10:43:05 PM »
Unfortunately the bundling notice is old. It went into effect maybe the beginning of 2011? Not sure. There's a thread about bundling under the Medicare/Insurance heading and I've seen a number of threads about people who can't get Epo. But I think most of us have adjusted to the changes as best we can. At my center they did not withhold epo so I was lucky. But there are also some issues related to the side effects of epogen that were part of the decision. I haven't followed all the details but someone here can probably help you.
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MooseMom
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« Reply #2 on: June 20, 2012, 10:49:02 PM »
The FDA issued a black box warning several years ago on Procrit (I was taking it at the time, and it freaked me out).  It was determined that too high a hg level led to a higher risk of stroke and cardiovascular problems.  It seems that some dialysis clinics habitually overmedicated their patients with epo because, since it was outside the bundle, it was a lucrative revenue stream.  Never mind that they were harming their patients.  Now that epo is part of the bundle, some clinics don't/won't use enough of it because it is no longer so lucrative.  Never mind that they are harming their patients...

We wouldn't be turning into a nanny state if people could be trusted to do what is right and not merely what is profitable.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
okarol
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« Reply #3 on: June 21, 2012, 01:20:52 AM »
Jenna could not get Epogen based on her nephrologist's prescription and labs showing her hemoglobin was below 9. She had to get another lab "iron panel" before the insurance company would approve it.
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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.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
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 #4 on: June 21, 2012, 05:56:52 AM »
Proper iron levels are important to make EPO most effective.
Also make sure you take folic acid.

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."
Whamo
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« Reply #5 on: June 21, 2012, 11:21:17 AM »
I'm sorry I don't have the link to the new notice, but it also talks about how kidney centers are changing the way they treat patients, in a bad way, because of the belt tightening.
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KAF454
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It is what it is today.
« Reply #6 on: June 21, 2012, 12:47:46 PM »
Personally, I'm waiting for an official notice that says my PD nurse has to stop bitching about my weight.
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PD catheter inserted 11/2011
CCPD begun 12/2011
Activated on transplant list 01/27/2012
PD efficacy tanked 12/2012. CVC inserted for hemo.
Elected to stay on hemo 01/2013. (10.5 hours per week instead of 8 hours every night? No contest!)

Today I will not worry unless the animals start lining up 2 by 2.
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