Civil Rights and Kidney Dialysis

[plugger]

A person can spend their time supporting these dialysis companies in their quest to protect their over-sized profits from medicare cuts, but if history is any guide it looks like money isn't the problem:

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From ’91 to ’01 expenditures for End Stage Renal Disease nearly tripled, while the number of patients only doubled – yet deaths were up 123%

www.usrds.org Annual Data Report 2003 pg 172, population up 106%, deaths up 123% from ’91 to ‘01 (I should add the for-profit companies – such as Davita – were taking over this area of medicine during this time period)

"In 1991 Medicare expenditures were $5.8 billion, and non-Medicare costs from heath plans and other coverage were $2.2 billion—a total, then, of $8.0 billion from all sources (see Figure p.6 on page 17). By 2001, costs of the program had reached $22.8 billion, almost triple the earlier level of expenditures"
2003 USRDS Annual Data Report
http://www.dialysisethics2.org/index.php/Our-Concerns/fact-sheet.html
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"Italy has one of the lowest mortality rates for dialysis care -- about one in nine patients dies each year, compared with one in five here. Yet Italy spends about one-third less than we do per patient."
http://www.propublica.org/series/dialysis

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But if you want to spend your time supporting an organization that could bring about real change, I would suggest an organization being supported and led by the most vulnerable of dialysis patients: dismissed patients!

Dialysis Advocates started as an organization with it's founder helping patients who had been unfairly dismissed from their clinics.  It is now evolving into an organization with patients helping patients.

And now it is joining forces with the Civil Rights movement and leaders Rev. Floyd Harris and Dr. Jean Kennedy.  They have been shocked by the abuses they have seen and are determined to turn this into a Civil Rights movement.

From everything I've seen and heard, I sincerely believe this is going to be a movement that will spearhead some real change!

http://dialysisadvocates.com/

 

[plugger]

Read and see the people behind this:
http://dialysisadvocates.com/patient-stories/

Hear their voices!
http://www.blogtalkradio.com/realtalk1dr/2013/08/13/real-talk-to-achieve-real-solutions    (latest)
http://www.blogtalkradio.com/realtalk1dr/2013/06/11/rev-harris-dr-kennedy-interview-patients-advocate
http://www.blogtalkradio.com/realtalk1dr/2013/05/22/rev-harris-dr-kennedy-interview-arlene-advocate
http://www.blogtalkradio.com/realtalk1dr/2013/05/15/rev-harris-dr-kennedy-interview-arlene-mullin

[plugger]

According to the dialysis advocates' facebook page, demonstrations are being planned in Los Angeles and Oakland along with some other groups.

[Rerun]

I listened through the first link and was turned off with the association of Civil Rights and lynchings....  WTF

I'm glad we have people looking into this.  I know I have felt retaliation for asking too many questions and if they dismiss a patient we don't have too much time to fight and then we DEAD.

I will call this Arlene tomorrow to get more information.  I like the fact that we are gearing up to fight these multi-gazilllian dollar centers as our care gets worse but I don't want to be associated with that Rev. blasting off about slavery.  We all the same on Dialysis.

[Rerun]

I called Arlene this morning.  She is there fighting for us like Karol and Sluff are fighting for us here.  Not on dialysis herself, but worked in the industry and saw too much.  Go to her site listed by Plugger and take a read.  I've invited Arlene to our site as well.

  We need a change and it will take us patients to make it.  These huge companies make too much money and it only goes up not down to us as patients.  Now they want more and don't want to take cuts like Medicare is having to make.

And if you ask too many questions..... you may be dismissed from the center and have no where to go.

                                                

[plugger]

Rerun,

Great to hear you had a chance to talk to Arlene!  I will always thank her and our old friends for being there when I needed them.  Thanks to them I don't have a horror story like many of the patients you hear from on the above links.  My daughter was able to have dialysis in peace way back when while I took the heat for getting her off reuse, questioning their dry weight procedures, worrying about: staff's lack of training, their high patient/staff ratios, and my daughter's short dialysis runs.

Arlene and friends were there to back me up with some credibility in regards to what I was saying.  Though I was getting blame for things I didn't do (another story) and the charge nurse did drag me into her office (felt like I was in the principal's office) and inform me they had a meeting about me.  They decided they weren't going to throw my daughter out and would learn to put up with me (a little intimidation?).  Did they do this out of the goodness of their hearts?  - or because they knew Arlene and friends were backing me up?

I don't know, I listen to these stories about dismissed patients and have to wonder if the Reverend's remark about lynchings is that far off?

[plugger]

From the dialysis advocates' facebook page:

"We will be on the Radio with Chili Most and it will be broadcast from my understanding in Alabama,Nationwide and International.
I will post the FM station number next week.

It will be live on Sept 3rd with Arlene and Sept 9th with Bill . It will be at 8:30 am PT.

Look him up on UTube, he also is a musician. It looks as if we are rolling along to get the plight of dialysis patients out."

[Gerald Lively]

Did I miss something here?  The problem seems to be the mistreatment of people who are already patients.   Demonstrations in Oakland?  Get real; how many people in the general population know anything about dialysis? Who cares?

I was not a good patient, not when I had major surgery and not when I was on dialysis, and I am especially bad when doing regular doctor visits.  Why?  Because at least one doctor has lied to me resulting in major surgery and a complete change in lifestyle.  While on dialysis I found the attending nurses to be especially offensive, mostly due to inattention to my needs and the needs of all the patients in the room while I was there.  I had to calculate my own dry weight/water retention causing me to instruct the nurse on how much to take out.

And I will not forget the male nurse farting while making some adjustment to the equipment.  Okay, that isn’t major, but it does reflect an attitude.  I am not on dialysis because by my own analysis I didn’t need it.  I called in a reluctant doctor to test and they released me.

I spoke for every patient in that room.  When I stop by now and then, they remember.  I don’t ask to go into the treatment room, I just go in.  I hope I did some good.

Pardon my skepticism but I don’t think demonstrations in Oakland is your best approach.  Trying to relate dialysis to lynching will not work – nobody knows what dialysis is all about.  Old people are not going to participate in a demonstration on a level that changes minds, you need the younger folks and they will burn bras and draft cards because that affects them.  Dialysis, that’s another game.  Take it from an old protest sign carrier, if you can’t convince me of the righteousness of your cause, you will lose.  I have seen both sides. 


 

gl

[plugger]

Gerald,

It looks to me my friends are focusing right now on these clinics acting as judge, jury, and executioners - we are talking basic human rights here, sentencing without so much as a trial.  We treat prisoners needing dialysis better!

And no, I don't expect too many dialysis patients to show up at these demonstrations, but it looks like Arlene and friends have worked hard to form alliances with some of these civil rights groups and they are appalled - and working on getting their people out.

You can try to predict how it will all turn out.  Me, I believe in doing what your heart tells you is right - win, lose, or draw; I'll leave predictions to others.  To tell you the truth I was surprised when our group here got the Colorado state bill for tech certification through the first time back in 2007, so you just don't know how things can turn out.  But this looks to me like a path work trying. 

[Rerun]

What I would like to happen is have a 2 day strike on these centers.  I could live from Monday to Thursday without dialysis.  I would just go on the Emergency Diet.  If all dialysis patients skipped one dialysis session and put these centers DOWN.  Kick them right in their pocket books. 

What do you think?  Who is with me.  Lets do it in October.

[plugger]

Rerun,

No!!!!! - please hold your horses for just a bit.  I talked to Arlene and we both agree we don't want to see anybody retaliated against and endanger their health  - especially at this point (though we both admire your fighting spirit, always been hard to get dialysis patients to stand up).  Arlene mentioned she isn't sure she and our friends could handle a big flood of dialysis patients who had their clinics wanting to thump them.

Arlene is asking most patients to wait until after the demonstrations to see where we go from there; just talking to her it sounds like there are a lot of irons in the fire.  One of Arlene's favorite sayings over the years has been "one horse leads the charge".  It looks like our money is on Rev. Harris for this.  If patients want to talk or write they can contact Dialysis_Advocates and you can follow what is going on at the Dialysis Advocates facebook page.

[Rerun]

Okay.

                     

[plugger]

Rerun,

Sorry!  But I do like the way you think!

And it does look like we won't have to pull out the sledgehammer quite yet.  From the dialysis advocates facebook page:
"Demonstration is still on. Massive planning is going on now, to organize and many more Radio shows.

We are going under the Civil Rights leaders. It is amazing to watch the Churches and other groups organize."
https://www.facebook.com/DialysisAdvocates

[Hemodoc]

What I would like to happen is have a 2 day strike on these centers.  I could live from Monday to Thursday without dialysis.  I would just go on the Emergency Diet.  If all dialysis patients skipped one dialysis session and put these centers DOWN.  Kick them right in their pocket books. 

What do you think?  Who is with me.  Lets do it in October.

Wow, what a concept. That would impact their budget in a big way and be a sort of hunger strike at the same time. Obviously, not all patients could participate, but what a concept. If it is OK with you, I will run it passed a friend of mine as well.

[plugger]

I suppose a 2 day strike is something to think about if there is a major roadblock.

But for one of the few times in my 13 years of watching this, it looks like this area of medicine just might get the attention it deserves.

From the Dialysis Advocates facebook page:
"Keep your fingers crossed...the ACLU may take Thomas case in Nashville (home dialysis patient who was dumped). This would put a stop to this insanity and bring accountability.

We contacted them and have a conference next week...!

Still doing the demonstrations...! It is in the works and will fill everyone in as information is given to us..."
https://www.facebook.com/DialysisAdvocates

[obsidianom]

Could you give some info on the Thomas case. Why was he dumped and who did it .etc.

[Rerun]

I sit incenter for 8 hours and when the air Conditioning shuts off this putred smell engulfs my chair.  The drains don't work right and our waste smell surrounds us.  They spray them with bleach etc...  But, can't afford to get a plumber.  OMG Really?  This DaVita can't afford to get the drains fixed......  So I have to suffer not feeling well plus this god awful smell. 

That is abuse.   

[obsidianom]

Next time you go for dialysis bring a bunch of the car deodorizers/ scented hanging things and hang them all over your dialysis machine before you sit down. Maybe that will get their attention . At least it will smell better.

[PatDowns]

I sit incenter for 8 hours and when the air Conditioning shuts off this putred smell engulfs my chair.  The drains don't work right and our waste smell surrounds us.  They spray them with bleach etc...  But, can't afford to get a plumber.  OMG Really?  This DaVita can't afford to get the drains fixed......  So I have to suffer not feeling well plus this god awful smell. 

That is abuse.   

Besides complaining on IHD, have you filed a grievance with your ESRD Network and State Surveyors?

[plugger]

Could you give some info on the Thomas case. Why was he dumped and who did it .etc.

Mr. Thomas was dumped for missing appointments - he denies this, and claims to have been the perfect home dialysis patient for 7 months.  It was davita and Dr. Gerald Schulman MD (Professor of Medicine of Vanderbilt University of Medicine) who dumped him.  Believe this is all I can say for now.  For more, check out the Dialysis Advocates' facebook page:
https://www.facebook.com/DialysisAdvocates

And the news section:
http://dialysisadvocates.com/news/

[obsidianom]

I read what I could find. The whole thing is very sad and disturbing.
I think one thing I have found in my area and is probably true everywhere is the doctors and staff of these dialysis clinics dont think about how stressful and life altering dialysis is. I have mentioned this to our social worker. At least she listened. The stress and pressure can lead to what appears to the staff as "poor behavior and non-compliance" on the patients part. What is really occurring may in fact be more stress related and feeling out of control on the patients part.
My wife and I have talked about this at length. At times we feel "invaded" by all the dialysis staff and rules. We do home dialysis so we have a bit more control but still feel inundated at times and it is very stressful. When she was in center for the first 2 months it was far worse and we were constantly butting heads with them .
Dialysis is hard enough on patients and family, but when the staff adds to it it can become untenable and lead to stress related "acting out" . If you put enough stress on any living organism it will react and sometimes vehemently. Its almost a "flight /fright reaction.
Discharging a patient is virtually a death sentence and is unacceptable , period. !    There are ways to work out the issues but discharge is wrong and immoral. Shame on any doctor or staff that takes poart in that.

[plugger]

I know what you mean, it was hard enough to accept my then 18 year-old daughter was probably going to have to deal with kidney disease for the rest of her life.  Then add on top of it a staff that felt compelled to toe the company line - no matter what.  It was hard not to boil over, which would have made things worse.

The closest I came was my discussion with the people at the clinic over reuse.  I brought in studies that looked pretty darn reputable to me and the doctor just seemed to come back with "you aren't a doctor".  The doctor finally backed off and did put my daughter on single-use, I like to think it was out of the goodness of his heart.  But I don't think it hurt when I let him know Arlene Mullin and friends were watching this.  I also checked to make sure they didn't slip in a low-grade dialyzer, which they didn't after being assured by Arlene Mullin and friends it was the finest kind.

The reuse studies I've seen over the years seems to be a battle of what I'll politely call "good company people" vs. such notables as: University of Oxford (England), the government's National Institute of Health, John Hopkins, and Fresenius.
http://www.dialysisethics2.org/forum/index.php?topic=57.0
http://www.dialysisethics2.org/forum/index.php?topic=58.0

[plugger]

(From the dialysis advocates facebook page)
GREAT NEWS!

It appears our patient in Nashville (Thomas case ACLU is taking), is now accepted in a Vanderbilt clinic.

It appears that they had a change of heart. It was a close call that he didn't die..he is not doing well...hopefully this will end this insanity.
https://www.facebook.com/DialysisAdvocates

[Simon Dog]

We treat prisoners needing dialysis better!

This is quite literally true.

If your doc wants to get you a 200 or 250 filter at FMC, (s)he must apply to the P&T board - Pharmach & Therpapies a/k/a cost control.    Federal prisoners at Devans, MA used to get only 200s, but a RN who has worked there told me they are now all getting 250s.

[plugger]

Knew it!!  Now we see more proof.

Anyway, from Dialysis Advocates:

"Radio show is starting up on Tues Oct 1st. at 9 pm Pacific time.
We will be discussing Dialysis issues, and how patients can protect themselves. Lots of good advice.

Patients will also be able to talk about issues that their names will not be used, unless they want to.

Workers also have been abused as far as patient quota's.

Our show is going to be called "Lets talk about Dialysis" and lets come up with solutions.

We are non-industry and will keep you Confidential.

It will be on Blogtalkradio..number to call in is 1-818-572-2947"