I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: NDXUFan on November 26, 2013, 04:53:38 PM
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Before you know it, they are going to come after dialysis patients...... It is time we stand up to these arrogant people, you hear me, Peckham? Stop selling these decent people a bill of goods. A number of people told me about you and AAKP and how you sold dialysis patients down the river. It is just all about you, right? It is all about you and not dialysis patients, what a fraud.
ObamaCare is supposed to be a huge boon for anyone with a pre-existing condition. Count that another promise broken: It’s actually denying care because of pre-existing conditions.
Millions of Americans with cancer and other chronic illnesses will wind up paying more for lifesaving care, if they can get it all.
To keep costs down, the White House designed ObamaCare plans as cut-rate HMOs. The low profit margins have forced insurers to downsize the number of doctors and hospitals in their networks — and to slash what they cover for out-of-network treatment.
So most ObamaCare plans don’t include the vast majority of the best cancer doctors and cancer centers. That’s a huge problem for these patients. As Dr. Scott Gottlieb, a former Medicare official, writes: “Cancer patients often need the help of specialized doctors and cancer institutions that won’t make it into many of these cheapened networks.”
All across the country, leading cancer centers — including New York’s Memorial Sloan Kettering — are excluded by the largest plans. In Washington state, the largest exchange plans exclude world-class cancer care for kids such as the Seattle Cancer Care Alliance. California’s state-of-the-art Cedars-Sinai cancer center isn’t in any ObamaCare plan. Only a few plans include the Mayo Clinic.
And if you want a doctor outside such networks, you’ll generally have to pay the full cost of care.
Many people will get better coverage at a lower cost under ObamaCare (after all, the feds are spending hundreds of billions on it). But most cancer patients will wind up paying more for less.
Take Michael Cerpok, a leukemia survivor in Fountain Hills, Ariz. Right now, his monthly premium is about half his monthly take-home pay. But the ObamaCare law forced his insurer to kill that plan for one that fits the law’s rules.
Now he’ll have to pay more for drugs, and his Mayo Clinic doctor is no longer in his network.
Last year, his treatment bill was more than $350,000, but thanks to insurance his out-of-pocket was only $4,500. Now, to keep his doctor, the one who has kept him alive for seven years, Cerpok will have to pay $26,000 out-of-pocket.
ObamaCare also stints on drug coverage, severely limiting the medicines plans cover. Many pre-Obama plans just charged a co-pay of about $50-70 a month for cancer drugs. Under ObamaCare, thousands of cancer patients will have to pay more than $2,500 a month for medicines.
Horribly, ObamaCare is limiting access to new medicines just as a revolution is delivering far better treatments. More than 40 new treatments target the genetic source of tumors, as opposed to older therapies that kill cancer cells after they spread. On average, ObamaCare plans cover only 10 targeted therapies, and insurers don’t have to add new breakthroughs until 2016.
A study by Avalere Health found that up to 90 percent of ObamaCare plans will force cancer patients to cover half the cost of new drugs until they hit the out-of-pocket maximum. By comparison, only 29 percent of non-ObamaCare employer-based plans do so.
Many patients will just give up. Another Avalere study found that people are four times more likely to stop using innovative therapies if they have to pay $500 or more.
South Carolinan Bill Elliott, 50, and a late-stage lung-cancer survivor, is looking at doing just that. He reports that premiums for his family will jump from $150 to $1,500 a month. His doctor isn’t in the ObamaCare network and neither are his medicines, so he’s thinking about stopping altogether, “pay the $95 or whatever fine and I’m just going to let nature take its course,” because he doesn’t want to burden his family.
Forget the Web site and other disasters: The ugliest part of ObamaCare is how it denies life-saving coverage to cancer patients. That isn’t a “glitch”; it’s a cruel and key feature of the law.
Robert Goldberg is vice president of the Center for Medicine in the Public Interest and publisher of valueofinnovation.org.
http://nypost.com/2013/11/12/death-by-obamacare-reform-reams-cancer-patients/
Where, Oh where, did you hear this before????
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Before you know it, they are going to come after dialysis patients...... It is time we stand up to these arrogant people, you hear me, Peckham? Stop selling these decent people a bill of goods. A number of people told me about you and AAKP and how you sold dialysis patients down the river. It is just all about you, right? It is all about you and not dialysis patients, what a fraud.
Can you elaborate please. What did people tell you?
How has Bill Peckham (and AAKP) sold dialysis patients down the river?
8)
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First, is this post political, general discussion, news story or off topic? It's all over the place.
Secondly, apparently a reminder of the rules is needed:
Comments that include personal attacks or other inappropriate comments or material are not allowed. You can disagree with another member's opinions and discussions are encouraged, but do not go off-topic and attack the person rather than their opinion.
Your comments regarding one of our members are a direct slur and not allowed, unless you want a ban.
okarol/admin
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This is Mark so before you grab your pitch fork get the rest of the story http://www.factcheck.org/2013/11/the-rest-of-the-story-on-arizona-anecdote/ (http://www.factcheck.org/2013/11/the-rest-of-the-story-on-arizona-anecdote/)
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And no it's not a slur - I am totally responsible for what has become commonly known as Obamacare but by all rights should be called Peckham Care. It was all me. I wrote the entire Bill and thought this whole approach would be ideal (the AAKP helped with the typing).* I did it. I admit it.
What I underestimated was the Republican desire to get shafted by insurance companies. That has caught me by surprise.
*Credit where credit is due
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And no it's not a slur - I am totally responsible for what has become commonly known as Obamacare but by all rights should be called Peckham Care. It was all me. I wrote the entire Bill and thought this whole approach would be ideal (the AAKP helped with the typing).* I did it. I admit it.
What I underestimated was the Republican desire to get shafted by insurance companies. That has caught me by surprise.
*Credit where credit is due
:rofl; :rofl; :rofl;
You crack me up, Bill!
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I had NO idea you had such power Bill. For your next act, can you create chocolate that doesn't make us fat?
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You're my hero, Bill!
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Go Bill!!!
:cheer: :cheer:
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I try really hard not to be a negative person. It is difficult when faced with medical problems. This website is a wonderful place to get support and talk with people who understand. I do not understand why anyone would use this message board to fight with people. Why would you go out of your way to antagonize someone? Why call people out like that? Not only are you rude, but the things you say are borderline ridiculous. Please keep your temper tantrums isolated to the political board so that I don't have to deal with it.
Thanks a bunch! :)
Feel free to pick apart my post by adding the little quote lines in that you seem to love so much. Just know that I have wasted enough time on you and won't be bothered to reply.
(Mods I am sorry, but I am sick of his rudeness and bullying. If you have to ban me I will understand.)
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Bill, you are truly amazing. Thank you!!!!
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I wouldn't say that the new ESRD Peckham Caretm Program is selling people a bill of goods, I think that Peckham Caretm is sending a lot of people up (and down) the River*!
The Peckham Caretm quality of life* and travel resources* are the best that I have seen in the industry.
I am a proud, card carrying member of the ESRD Peckham Caretm Program, and I whole heartedly endorse this message.
Anna Bennett
ESRD Survivor
NB: Political mudslinging and polarization is dehumanizing, and deminishes us as a society. All satire aside, Happy Thanksginving everyone. Me, I am thankful that people like Bill Peckham put themselves out there to show us that life does not end with ESRD.
*Peckham Caretm ESRD River Adventures http://www.billpeckham.com/from_the_sharp_end_of_the/2013/08/dialysis-is-like-running-a-river-it-s-best-to-have-your-own-momentum-.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2013/08/dialysis-is-like-running-a-river-it-s-best-to-have-your-own-momentum-.html)
Quality of Life Resources http://www.billpeckham.com/ (http://www.billpeckham.com/)
Travel Resources http://www.billpeckham.com/from_the_sharp_end_of_the/travel/index.html (http://www.billpeckham.com/from_the_sharp_end_of_the/travel/index.html)
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The whole cost of healthcare is outrageous! Obama and Congress has decided to try and pay for it. I think that is the wrong idea. We need to address the COST that is fraudulent. When a bag of saline cost a dollar to make why then do some places charge $500 a bag or $1,500 a bag and some charge $5. That is what needs to be addressed.
Medicare has it right. DaVita charges 66K a month for dialysis and Medicare pays $3K I love it.
Insurance companies just laid low and then sprung this on America. Do away with them. Make health care affordable again.
Rerun, Moderator
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Shouldn't this be in the political section?
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Before you know it, they are going to come after dialysis patients...... It is time we stand up to these arrogant people, you hear me, Peckham? Stop selling these decent people a bill of goods. A number of people told me about you and AAKP and how you sold dialysis patients down the river. It is just all about you, right? It is all about you and not dialysis patients, what a fraud.
Can you elaborate please. What did people tell you?
How has Bill Peckham (and AAKP) sold dialysis patients down the river?
8)
Oh maybe it was the Colorado River? :2thumbsup;
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Shouldn't this be in the political section?
That was my first question.
Is it more healthcare, or political?
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There is Political then there is sticking your head in the sand about health care. People need to know what is going on. Or just spend the whole time in Off Topic.
Just my :twocents;
Rerun, Moderator
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Dialysis patients were sold a bill of goods when 3x/week rather than every other day became the US standard of care.
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Rerun, if it was presented as a discussion about healthcare I might agree with you. Since it was presented as an attack on Bill I respectfully disagree.
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I'm grateful Bill sent the 5280 (http://www.5280.com/magazine/2012/09/strangest-show-earth) journalist my way, has sent an example for the way dialysis ought to be, has been involved in the dialysis bundling payments, and as I've said before I'm grateful for him educating me about the epo scandal (http://www.dialysisethics2.org/index.php/Our-Concerns/dialysis-treatment-a-punch-in-the-kidneys.html) back when.
If it was a misjudgment on Bill's part back in his days with AAKP not to get involved with things like dismissed patients, I'm content to leave that between him and his Maker.
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my, aren't these confusing rants becoming very tedious!
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Now I understand. Mark has fallen down the Dialysis Ethics rabbit hole and into a magical land where the AAKP has the resources of Crassus and the unfocused openness of an Occupy Wall Street drum circle.
Here's a pro tip - when asked to the red or blue pill, the right answer is no.
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Ok, I must admit the burn of disappointment from years ago welled up inside me when I saw Mark under the gun on this thread. Hard to say what would have happened back in the day if you and AAKP had gotten involved in the issue of dismissed patients. One scenario could have been you could have pulled out of AAKP and just become a footnote in the history of dialysis - which I'm willing to consider. But I've admired your work since then.
I like to think both of us have built up some nice credentials over the years: you with what I mentioned above and appearing in some top-notch articles, me with helping to head up a group here in Colorado that backed a tech bill that got through the state legislature (twice).
Maybe it is time for you and I revisit the issue of dismissed patients. Maybe it is time for us -all of us - to start pushing harder on our federal reps to stop this abomination of dismissed patients! What do you say?
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I know some people assume that what I choose to write on the internet, here at IHD or in the past at DE or HDC or my own blog or before that the Brumley board or now Facebook, represents the totality of me and what I am doing but that isn't true for me and actually I doubt is true for anyone.
I remember reading posts on DE ten or so years ago and not knowing what world the posters were living in - it'd be some post about what I should be doing or why didn't I do something or why didn't the AAKP act or why didn't I make the AAKP act and I would sit back and think WTF? BEcause I'd know that I had served on the AAKP board for less than two years, that I had been kicked off the AAKP board and that I had nothing to do with the AAKP. All I could think is that people were confusing my NKC involvement with AAKP.
Now NKC, I think I have answered for NKC, at times poorly but we're all working our way up the learning curve. But as far as DE's raison d'être, involuntary dismissals, I'd say NKC is a safe harbor and if all providers performed similarly there would not be a need for DE. Though I am sure some other group would be puffing up how bad dialysis is and telling reporters about dead patients stacked like cord wood, so I'd probably still be getting calls from reporters and having to clear things like that up ::)
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The problem with dismissals is lack of documentation and lack of reporting. It is quite difficult to define a problem with only anecdotal self reported evidence which NO ONE will accept in any administrative capacity. Perhaps that is the first place to start, getting the government to follow dismissals.
As far as the AAKP, I am part of the Medical Advisory Board and we had a recent intense discussion of the ACP and ASN positions on renal screening. Organized nephrology where ever you find them are NOT our friends. Fortunately, there are several on the AAKP MAB that do have a heart for patients, but there are many strong dissenting voices to contend with.
One of the biggest issues is that our numbers classify most issues into an orphan disease category. Japan for instance has a very high incidence of IgA nephropathy and since 1973, they have screened all school children for protein in their urine. They extended this into the work place and community. When discussing the issue with the AAKP MAB, one nephrologist who publishes in medical journal is quite frequently stated that there is NO evidence of any benefit from screening. I pointed out that is if you look at the data from the US only. To make such a statement you must ignore 40 years of documented benefits to patients and the Japanese government in huge cost savings with their screening program.
We remain in a lopsided battle, one where we have little power and a small voice that many simply wish to silence. However, if we are not part of the AAKP and other such organizations, they we truly are on the outside looking in.
I believe our long term hope remains with improvements in technology leading to marketplace competition for the home hemodialysis population. Until the industry can make more off of home hemo and selling their machines, then what we have today will continue or worsen here in the US.
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The Networks have to be informed of involuntary discharges, per the Conditions for Coverage (§ 494.180 (f)(4)(ii)). They have the number they just don't release because people won't be able to put the number in context. Just like what they said about the dialysis facility reports before Pro Publica made them available.
The involuntary discharge problem is more of a state problem, when there are failures it seems to be a state level failure.
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Read the opening post on this thread. My, my, my! And - golly whiz! I have had a major cancer four times since 1993.. This last one is in remission but I do chemo once every sixty day to keep it in remission. Each dose costs $22,000. For two decades I haven't had to pay a dime. One more thing, In California there is a law that has been on the books for a cazillion years forbidding denial of insurance based on pre-existing conditions.
I think the opening post is propaganda.
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Hi Bill,
I've been emailing Arlene at Dialysis Advocates. I don't think I will be working with you nor taking your advice. So go off and travel which every way the wind takes you and get that next photo op while we take care of business. By the way, you insinuated AAKP was a little short on funds. What? DE was loaded? I remember us being just a small group of angry, frustrated people without much to spare between us. Not much until some powerful friends came along. And there seems some confusion about who actually sent the journalist to me. Oh, and focus on this: http://ihatedialysis.com/forum/index.php?topic=30041.0
And I assume you will know what to do with your red and blue pills.
P.S. Say hello to Gary P. for me
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You've been emailing Arlene, you won't be working with me and I should say hi to Gary P, what an odd word salad. You're a grown man plugger if you have something to say, say it.
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Oh my! Aren't you the bully boy with your big, bad friends behind you! I'm starting to feel this is a waste of time, but maybe I ought to condense it down to a nugget for a public service announcement: seems your ties to the dialysis companies are still a bit tighter than one might imagine, and a person ought to wary. And here I thought you had been on the road to redemption since your days with AAKP! Feeling a bit let down here brother. I don't know maybe I should PM you with specifics, maybe I'm wasting my time when there are better pursuits - feeling disappointed right now.
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Again with the AAKP - more riddles and innuendo, pluggger are you capable of speaking plainly? Do not PM me, if you believe I am or was in some way obliged to you or Arlene or the DE community I'd like you to state it in plain terms.
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Nay, I'll PM you. Don't want to waste this board's time with our little feud. I'm sure it is all a big misunderstanding, or maybe just Arlene (from Dialysis Advocates) being cranky from having to do the networks' work for them.
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The ESRD Network system is a perfect example of Regulatory Capture.
8)
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I am responding to this thread only because someone needs to say, "You people are far too serious about some things." Posting here for informational purposes is great. Arguing is not so great.
Cancer a problem? Nope! Had it four times. Is the government going to slip in a fast one on cancer treatments? Not likely, although some Tea Party types would prefer that two or three million go without any healthcare. Separate the rumors from the facts and remember; no rape is illegitimate, women in the US are not subject to Taliban rules, and the elderly, children and the sick need the best we can give them.
A little fatalism is good for the soul.
This may be my final semi-political commentary. I prefer to live out my days with a smile. And, yes, my career was in politics.
Boogie.
I am on day eight of my opiate (Norco) withdrawal. I suspect I will live. Maybe! Oh, what the heck, I will stick around.
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Nay, I'll PM you. Don't want to waste this board's time with our little feud. I'm sure it is all a big misunderstanding, or maybe just Arlene (from Dialysis Advocates) being cranky from having to do the networks' work for them.
No no no. What part of do not PM me was confusing? You can't go around gossiping like school girls, come on here and make inflammatory accusations and then curl up into a ball of anonymity when I call you on it! That is bad form. It is unfair to me and it is corrosive to the IHD community. Your concern for other people's time is misplaced, no one is compelled to read this thread or any other but it is now clear that Mark should have started this confusing thread in the off topic area since it has nothing to do with healthcare. This thread has only to do with feverish imaginings at the edge of the online CKD community, in the hunkered down silo called Dialysis Ethics.
Here is the PM plugger sent me, the PM that should have been posted here (note number 8 was missing, one assumes it was too secrete for even a PM):
I summed up the email I got from Arlene:
1) She stated you found out about a Senate hearing that was canceled and you were on CNN complaining you did not get an extra hour (not sure what this is about)
2) She thinks it's funny, a pawn for the industry straightening out the press and called you a mouthpiece
3) You report to the industry
4) What's a Judas Goat? (I'm kidding, I know)
5) You pretend to be on the patient's side, but report back to your corporate masters
6) We're crazy, but we're right
7) You have been a road block 8) Out for yourself
9) You admitted getting in our way on a site? (missed that one)
My first question is what happened to the AAKP? I thought I was suppose to have been cahooting with the AAKP ??? please explain.
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Two other specific points of clarification, aside from how the AAKP fits into this: What year was the Senate hearing? - are we talking about the one in 2002 or 2003 that was postponed and not rescheduled? I don't remember being on CNN (my Mom confirms ... and she would have remembered for sure). And how does Gary P the editor of RenalWEB fit into this? you mentioned him earlier.
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One last request. You underscored your belief that I am a Judas goat for dialyzors (a Judas Dialyzor) can you elaborate and give an example of my leading dialysis patients to slaughter? My advocacy has been online so surely there are posts here or on my blog - no blog post has been deleted from DSEN (but Hemodoc blogged at DSEN and now he has revealed that he is on the AAKP MAB, maybe it does tie together. hmm ...) or at Home Dialysis Central or at Dialysis Ethics's own board. There must be some online example of my industry approved bleatings.
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Good grief....what silly madness we have here. Plugger please stop so that Bill can have more time to play scrabble with me.
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Good grief....what silly madness we have here. Plugger please stop so that Bill can have more time to play scrabble with me.
These claims deserve to be addressed but I would like to have my questions answered first.
saith? really?
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Nay, I'll PM you. Don't want to waste this board's time with our little feud. I'm sure it is all a big misunderstanding, or maybe just Arlene (from Dialysis Advocates) being cranky from having to do the networks' work for them.
No no no. What part of do not PM me was confusing? You can't go around gossiping like school girls, come on here and make inflammatory accusations and then curl up into a ball of anonymity when I call you on it! That is bad form. It is unfair to me and it is corrosive to the IHD community. Your concern for other people's time is misplaced, no one is compelled to read this thread or any other but it is now clear that Mark should have started this confusing thread in the off topic area since it has nothing to do with healthcare. This thread has only to do with feverish imaginings at the edge of the online CKD community, in the hunkered down silo called Dialysis Ethics.
Here is the PM plugger sent me, the PM that should have been posted here (note number 8 was missing, one assumes it was too secrete for even a PM):
I summed up the email I got from Arlene:
1) She stated you found out about a Senate hearing that was canceled and you were on CNN complaining you did not get an extra hour (not sure what this is about)
2) She thinks it's funny, a pawn for the industry straightening out the press and called you a mouthpiece
3) You report to the industry
4) What's a Judas Goat? (I'm kidding, I know)
5) You pretend to be on the patient's side, but report back to your corporate masters
6) We're crazy, but we're right
7) You have been a road block 8) Out for yourself
9) You admitted getting in our way on a site? (missed that one)
My first question is what happened to the AAKP? I thought I was suppose to have been cahooting with the AAKP ??? please explain.
Bill, have you been holding out on us? Let me have a share of the industry money you were working for, I guess on your blog perhaps. I didn't know you were so rich, but I guess you just hide it well. Funny, you tell everyone you work at a union job full time. I guess you just hide all the corporate money well.
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Why should kidney transplants get drugs paid for for LIFE ? What about all the other transplants? Heart, Lung, Liver.... How do they manage when they done even get 3 years free. The problem is the drug companies charge too much. Again, we try to figure out HOW to pay for it instad of capping prices. Medicare was intended for OLD people not us.
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Well noahvale/patdowns/munchmakutchi or what ever name you are going by today (I'll just call you Frank) I am fully transparent about who I am and who pays (http://www.billpeckham.com/from_the_sharp_end_of_the/peckham-vitae.html) me. It's a bit much to hear that I am against transplant. I've written pages and pages explaining why the legislation that would expand drug coverage is a half measure and has been made redundant by the Affordable Care Act. No one from yourself to the PAID lobbyists in DC can give a single example of a person who could be expected to benefit from the law were it to pass.
It strikes me that you and plugger and arlene are all basing your suspicions solely on the idea that a dialyzor couldn't have his own opinion. That I, someone without kidney function, couldn't think for himself. Only a paid infiltrator would question the wisdom of blindly following urinators paid to do a job. Why would the American Society of Transplant Surgeons need to continue to pay their DC lobbyists if the half measure they've put forward is pointless? They wouldn't so it must mean the lobbyists are pure because transplant surgeons are infallible gods. It couldn't be the lobbyist's self interest driving this forward, it must be the home hemo industrial complex that is sabotaging this half measure that doesn't even cover the physician fees that would be incurred getting the meds prescribed.
I think that a fair minded person would look at arlene/DE's claims and ask themselves where are the links? I've written online since 1995, I've written as Bill Peckham online since 1998 (I changed from Billp_830 because as I found myself to be the only dialyzor in the room and asked to speak for all dialyzors; I thought people should know my views) so there is a long trail of posts that provide my reasoning about nearly every issue relevant to the provision of dialysis, including to a large degree, my opposition to the frivolous bill that would extend Medicare for immunosuppressant drugs for kidney transplant recipients. But no - a dialyzor supposedly working out of the carpenter's union couldn't possibly have his own opinions, couldn't possibly thrive on dialysis without a nefarious backer. And obviously anyone involved with the provision of dialysis, even the not for profit community based Northwest Kidney Centers is in the business only for the money.
That's the worst part of De's world view. That only they really care. Or as Frank would have it only DE and the kidney transplant industry. Since NKC provides dialysis they must be corrupted. There is cynical and then there is deluded, you are well into deluded.
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Wow, Bill went down the Rogue and the Grand Canyon with HIS OWN MONEY. No industry support. Bill has stated several times that if he didn't have FSGS, he would do another transplant. Remember, he had a transplant from his brother when he first needed renal replacement therapy that failed due to the FSGS.
What is it with IHD that folks just wish to attack from ignorance so many times. I don't get it.
Bill, you have no explaining to do to anyone.
Thank you for all you have done especially for me personally. We may disagree strongly on politics, but I have always known you as a many of integrity, honesty and lets face it, courage. These accusations against you are just bizarre. I don't believe you need to waste any more time on replying to these "deluded" folks as you state.
Have a great day Bill, your work for renal patients is not in any doubt. Thank you.
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Wow, Bill went down the Rogue and the Grand Canyon with HIS OWN MONEY. No industry support. Bill has stated several times that if he didn't have FSGS, he would do another transplant. Remember, he had a transplant from his brother when he first needed renal replacement therapy that failed due to the FSGS.
What is it with IHD that folks just wish to attack from ignorance so many times. I don't get it.
Bill, you have no explaining to do to anyone.
Thank you for all you have done especially for me personally. We may disagree strongly on politics, but I have always known you as a many of integrity, honesty and lets face it, courage. These accusations against you are just bizarre. I don't believe you need to waste any more time on replying to these "deluded" folks as you state.
Have a great day Bill, your work for renal patients is not in any doubt. Thank you. :clap;
Well said, Hemodoc.
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And, I'll do you one better, Rerun. I don't believe Medicare should be covering any form of renal replacement therapy for those of us under 65. However, that genie will not be put back in the bottle.
Is there a reason why Medicare for those of us with ESRD under 65 couldn't be rescinded? Is there a reason that this particular genie can't be put back in the bottle? Is it because the private insurers deem dialysis to be too costly to cover over a period of more than 30 months?
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Not surprisingly, this thread has strayed greatly from the OP.
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Let me ask you this question. What do you think the public outcry, backlash towards the government, and media spin would be if there was proposed legislation to rescind this provision of Medicare? If our country went to a single payer healthcare system then yes, it would happen organically.
Well, I would guess that since most people don't need this provision and don't even know it exists, once they find out about it, they might possibly wonder why people under 65 with ESRD get "special treatment". Even rerun is of this opinion. So I am not sure there would be much backlash at all, frankly.
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Not surprisingly, this thread has strayed greatly from the OP.
Most threads stray.
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No no no. What part of do not PM me was confusing?
Bill,
Here I am trying to be a nice guy and giving you the choice of posting the PM or not and you have a fit. I'm hoping Arlene and I are deluded and sadly mistaken, but she has been spot-on on just about everything she has told me. And give her credit, she has spent many years helping dismissed patients and there is no denying that, just listen to their stories. She has grumbled about you over the years, but I figured she hadn't seen what you were up to lately. I get the email with some harsh criticisms and I play the odds here - she is probably right. But let's hope we aren't! I hope this is all temporary insanity on our part! It will be worth a little egg on my face!
But tell you what, I'll see if this is worth our time to pursue, otherwise what I said stands. And I guess I got a little fixated on AAKP when I saw you defending them once again in a post years ago (was searching for something else):
http://www.dialysisethics2.org/forum/index.php?topic=335.msg337#msg337
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Pardon my ignorance, but the heck is "AAKP"?
I suspect it is a slam against the AARP. If so, I am disgruntled to find a snark on this website.
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Not surprisingly, this thread has strayed greatly from the OP.
Most threads stray.
Or is it the threads you are posting to? Causation vs correlation ... :P
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So Noahvale, how would you have it? Back to death panels? how old are you? Maybe the death panel wouldn't deem you worthy of living?
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But tell you what, I'll see if this is worth our time to pursue, otherwise what I said stands. And I guess I got a little fixated on AAKP when I saw you defending them once again in a post years ago (was searching for something else):
http://www.dialysisethics2.org/forum/index.php?topic=335.msg337#msg337 (http://www.dialysisethics2.org/forum/index.php?topic=335.msg337#msg337)
I stand by those posts 100%. If that passes as evidence of someone standing against people who are involuntarily discharged, then it perfectly illustrates why I believe you are deluded.
You haven't explained what troubles me the most about the DE/arlene broadside, to believe all that you wrote you have to believe Northwest Kidney Centers is the enemy. I joined the NKC board in 1997, if I'm a mouthpiece it is for them, if I report to corporate overlords it is to them, if I am leading patients to slaughter it must be NKC holding the axe.
How could you believe that? What the hell is the matter with you people?
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Pardon my ignorance, but the heck is "AAKP"?
I suspect it is a slam against the AARP. If so, I am disgruntled to find a snark on this website.
http://bit.ly/1jLjX7x (http://bit.ly/1jLjX7x)
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You are forgiven Mr. Peckham. I won't bop you on the head now.
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Not surprisingly, this thread has strayed greatly from the OP.
Most threads stray.
Or is it the threads you are posting to? Causation vs correlation ... :P
Well, yes, in one sense since I am usually the object of the personal attacks, that is true and I pretty much only post in the political sections which engender these personal attacks, but causation? I certainly didn't start or condone the personal attacks on this thread against you.
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Well, yes, in one sense since I am usually the object of the personal attacks, that is true and I pretty much only post in the political sections which engender these personal attacks, but causation? I certainly didn't start or condone the personal attacks on this thread against you.
It wasn't clear that I was teasing MM about her participation correlating to threads straying? Or are you being ironic?
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Bill,
But tell you what, I'll see if this is worth our time to pursue, otherwise what I said stands. And I guess I got a little fixated on AAKP when I saw you defending them once again in a post years ago (was searching for something else):
http://www.dialysisethics2.org/forum/index.php?topic=335.msg337#msg337
There is no doubt that all of the major renal support organizations are dominated by corporate support. Very hard to avoid that in a large organization. That being said, if we have no voice in what AAKP and other organizations state, then they will stray even further.
I am one of several on the AAKP Medical Advisory Board who are much in support of improved dialysis outcome and receive no support for our voluntary involvement.
https://www.aakp.org/about/medical-advisory-board.html
My involvement in a recent AAKP MAB teleconference led to a much different recommendation on the ACP/ASN screening guidelines. Although I hoped for a statement of outright support for the ASN position, the final document took a middle of the road approach but did note the dangers of misinterpreting the ACP guidelines in a primary care setting. If I was not involved, the document which will be released sometime soon would have looked very different.
Other board members who have publicly supported improved outcomes with more than just words include Chris Blagg, Tom Parker and Leslie Wong and several others. Once again, this is a voluntary position with no compensation. I am not sure at all what you are trying to imply about Bill.
Perhaps returning to the OP would be more productive.
Have a great night, but keep the popcorn close.
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Well, yes, in one sense since I am usually the object of the personal attacks, that is true and I pretty much only post in the political sections which engender these personal attacks, but causation? I certainly didn't start or condone the personal attacks on this thread against you.
It wasn't clear that I was teasing MM about her participation correlating to threads straying? Or are you being ironic?
Sorry, I thought it was coming at me. Just call me hypothermic in Idaho I guess. Have a great night Bill.
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I cannot take the credit for the way this particular thread has strayed! ;D
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I cannot take the credit for the way this particular thread has strayed! ;D
I think you foreshadowed the predilection of obtuse angles it has taken for sure MM. In any case, I went back and read through EVERY post on this thread. It is simply the most bizarre thread I have yet seen on IHD and there have been many bizarre threads. It doesn't end here for some reason:
https://www.facebook.com/DialysisAdvocates
No wonder we get no where in the dialysis advocacy circles. We just shoot each other instead of working together against CMS and the LDO's. I had thought that perhaps NxStage had sponsored Bill's trips down the rivers, but I asked him and was quite surprised to hear he did it on his own. NxStage benefited greatly from his independent action. And if Bill had been sponsored, so what given the benefit not only to NxStage to but to all on home hemodialysis. He would have deserved that support.
If Bill has gained any notoriety, good for him, he deserves it for all that he has done. I know Bill suffered physically from all of his travels representing dialysis patients and was not at all enriched. I am saddened to see such attacks in the dialysis advocacy groups. It is not helpful and only augments those who are the true enemies.
Lastly, we are stuck dealing with the devil as dialysis patients since the LDO's dominate the marketplace and work closely with CMS. They will also be the source of any future technological developments which are our only real hope of overcoming our current state of affairs in the US. We have NO CHOICE but to work with the LDO's in some manner or another. It cannot be avoided no matter how distasteful that sounds.
If we remain divided and fighting over the most trivial false allegations, what shall any of us accomplish? Wow, this thread tells us one of the reasons why the LDO's and CMS walk all over us. There are so few of us on dialysis who speak up at all. If we shoot our own foot, we have no ammo for the real fight at hand. I have seen this likewise with other advocates seeking their own pre-eminence. This does no bode well at all.
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"Bizarre" is the right description, Hemodoc. I am still trying to work out who Arlene is. ???
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At the risk of further straying, I would like to thank you, Hemodoc, and Bill for all of your efforts in the arena of patient advocacy. If my gratitude is naive or misplaced, as I am sure some may claim, so be it.
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"Bizarre" is the right description, Hemodoc. I am still trying to work out who Arlene is. ???
Arlene Mullins of Dialysis Ethics. She was a nurse in the industry for years and then went into advocacy as she saw conditions deteriorate. She has a heart for patients and continues to intervene on a regular basis for people who are discharged involuntarily. In addition, she was directly involved in FMC stopping re-use of their artificial kidneys. She has much to offer to dialysis patients.
Plugger keeps going back to the 5280 article and the interview. Bill, Arlene and I were all interviewed and quoted in the Denver magazine article with Luc Hatlestad.
http://www.5280.com/magazine/2012/09/strangest-show-earth?page=0,0
The message of that well written expose of Kent Thiry from an advocacy point of view is that we were all united in our views of the industry. Why we are now engaging in this fratricide within our advocacy community befuddles me but I hope it just comes to an end. Bill, Arlene, Plugger, or any other advocate are not the enemy. If you need to be reminded on who the enemy is, just read the article again. I would hope we can all publicly and privately speak with the same voice we did in that article. Just sayin ya know.
Lastly, there was some sort of reference to Bill allegedly selling out transplant patients. If you look at the medical literature, the renal support groups, CMS, popular press, etc., renal transplant support by far is in the forefront of renal replacement therapy options even though it represents a small percentage of the ESRD population. Bill of course has focussed on dialysis issues since that is his modality and it is greatly under represented by any of the large patient groups. What is the problem with that? That is also my main focus as well. Other than Shad Ireland, I don't know of any celebrity dialysis patients. Renal transplant has their Alonzo's and George Lopez's, but who do we have in the dialysis world who can gain the attention of the popular public?
If Bill in any manner fills that huge void, good for him. We need more like Bill getting the message out there to the public. Lastly, Bill is the most generous person I have ever met with sharing his notoriety. He had several people who were guest authors on his blog. For myself, he graciously introduced me to the world of dialysis advocacy. Bill always gave me credit when any was due. Bill and I worked very close the first couple of years I blogged and he patiently tried, perhaps in vain, to teach me some writing skills. Your allegations of self aggrandizement are not the experiences I had with Bill. There are many such people who Bill has selflessly helped over the years who can give such a testimony.
Once again, I would hope we could all gather together in the fight against the real enemies of optimal dialysis, it is not Bill, Plugger or Arlene.
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Well noahvale/patdowns/munchmakutchi or what ever name you are going by today
Thank you, Bill, I have suspected this for quite some time. (OK, maybe I didn't realise he was a Stephen Colbert supporter!)
I don't have the stamina to read through all of this and try to suss out what everyone is trying to say, but I do know that Bill's posts here and on DSEN have been some of the most helpful and informative I've encountered. Not sure why you're suddenly under this ridiculous dog pile, Bill, but it will blow over soon enough. I have no doubt whose side you are on in the renal world.
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Though I am sure some other group would be puffing up how bad dialysis is and telling reporters about dead patients stacked like cord wood, so I'd probably still be getting calls from reporters and having to clear things like that up ::)
cord wood: http://www.dialysisethics2.org/index.php/Our-Concerns/fact-sheet.html
If there are any more questions, problems, or complaints I suggest you go to the following: http://dialysisadvocates.com/patient-contact/
But I hope you understand how an answer might take awhile, things like dismissals take a priority.
And thank you HemoDoc for giving credit where credit is due.
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So what's your point plugger? The biggest problem facing people who use dialysis is tech certification? Why are you, a urinator, coming on IHD trying to pick a fight with me? Someone who has no official role in the provision of dialysis other than my willingness to volunteer and of course my needing dialysis. Does everyone need to stop and pay attention to DE?
I think DE is filling a role but the exaggeration and playing loosely with quotes; the aggressive interpretation of what was unsaid, it all has consequences. Really you have nothing better to do but continue to grumble about discussion board posts 10 years ago or your 2007 Colorado legislative efforts? Plugger you said you were trying to be a nice guy in an earlier post - you know what a nice guy does? He doesn't say things about a person, he wouldn't say to that person. A nice guy keeps perspective. And nice guy thinks before he writes shit on the internet.