daily dialysis now
Joined: 10 Apr 2003
Posts: 1
Posted: Thu Apr 10, 2003 4:11 am Post subject: I love the smell of irony in the morning
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<<Quote>><
>This is a very eyeopening lesson for how our legislators can get the wrong information from the dilaysis medical community and from the patients, themselves, with which to base their voting decision.<
><</Quote>><
>So instead our legislators should follow the assertion of an anonymous Internet poster and mandate "efficient dialysis"? Is this secret treatment regime, known only to a few, the true path to ESRD quality care? I?m thinking no. Your arguments are illogical; your evidence does not stand up to examination. <
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No Doubt
Joined: 10 Apr 2003
Posts: 2
Posted: Thu Apr 10, 2003 4:43 am Post subject: Dialysis Efficiency
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There is little evidence that 3x a week can produce efficient treatment for ESRD patients. A normal persons kidney works 24/7 to think you can miminic that with an efficient treatment 3x a week which are normally about 4hrs.and get the best results is erroneous. It allows patients to live but does little to help the BP control, sleep amenia, dimentia, appetite, diet and fluid restrictions, RLS and the many other symptons that are currently the side affects of dialysis. It also forces patients to live with their lives centered around the dialysis schedule and in a center instead of the comfort of their own homes.<
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>I don't argue that in-center standards need to be set and maintained but this has little to do with money it has more to do with accountability. Until more patients push for accountability with the help of DE or state inspections the problems won't go away. The reason I put the blame on accountablility and not on money is because some FMC patients rank their unit as good while others rank theirs as bad. This is the ame company with the same money. The only thing that changes in the equasion is the staff and accountability.<
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>I don't agree that day more treatments are paid for we will all loose again. There will be many winners out there as more programs and centers start offering the extra treatments. There will be much more flexibility in the lives of dialysis patients. Now it is just about critical that a patient get to everyone of their treatments; but on home dialysis you can skip a dialysis day and catch up. More patients will have the opportunity to work by being able to dialyze in the evening after work at home. Many families will have the opportunity of their spouses returning to work because they will no longer need to drive the patient to center. Many families will better be able to determine their own schedules not based on the schedule of the patient they are supporting. With more treatments per week it is reasonable to think dialysis patients who now have to be transported due to hypotension can improve where this isn't an issue.<
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>I am sure there is greed in the medical community as this seems to be the American way but to be fair it should also be acknowledged that the nephrologist and centers who started daily and nocturnal dialysis put the greed a side to offer patients something better and to do the studies to prove that paying for more treatments would be a benefit to dialysis patients and to our systems by reducing health related problems associated with dialysis. If you take a survey of home patients daily and slow nocturnal it's the dialysis patients who are speaking up saying it is better it isn't just the medical community.<
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>I don't see this as an industry concession. If the bill passed today the programs are not in place for the major majority of the the industry to even collect on it and you can surely bet those programs will never become available if it is only going to cost the industry without any return on investment. This is where the greed is; if there is greed.<
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>I doubt anyone can succeed in getting better in-center treatments and standards of care by trying to control the money. It is an issue of accountability, not $$$ and more patients and advocates have to force the accountability. <
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>Perhaps you should stop trying to equate more treatments vs in-center care. They are separate subjects both need addressing. Would you also say transplant med's shouldn't be paid for until in-center treatment improved. Would you question why patients have to have a transplant to escape the unit to feel better.<
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>Could it not also be said patients need transplants because the units don't seem to know how to do efficient shorter dialysis and deliver it in a professional manner? It makes no more sense to equate more treatments to in-center dialysis than it does to try and equate transplants to in-center treatments.<
> You are trying to take away from one choice, in hopes, it will benefit another and this will never benefit patients or bear any fruit.<
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checking this
Joined: 10 Apr 2003
Posts: 1
Posted: Thu Apr 10, 2003 2:23 pm Post subject: out
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How is it the legislators can pass a bill for more $$$, but can't pass one for accountability and standards? This is backwards.
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Think
Joined: 11 Apr 2003
Posts: 2
Posted: Fri Apr 11, 2003 1:08 am Post subject: Accountability
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The standards of dialysis care are passed and they should be improved. It is assumed that the standards of care are the law and they are to be followed. As in any situation when the laws are
oken someone has to force accountability. This can be done through warnings, fines, penalities such as closings or whatever is appropriate for the law that was
oken. If we could pass legislation to insure accountability we wouldn't need attorneys, courts etc.
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Fri Apr 11, 2003 6:05 am Post subject: Standards
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From what I understand, standards would have to be set by the Secretary of Health and CMS (center for medicare and medicaid services). Oh boy! Sounds like we would run into our old friend Thomas Scully! (head of CMS) Shall we say I don't remember him exactly being a friend to patients.<
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>Ridgerunner, if nothing else, you have definitely reminded us standards are needed (sheeeesh).
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Sun Apr 13, 2003 7:40 am Post subject: it feels good
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I just got done with church services today. The minister gave me a nice plug (at both services). I had my table and flyers at the back. I almost got hoarse talking, I think it went very well. I even talked to some people who had friends or relatives who had been on dialysis(or were currently on), they seemed very interested. An editor at the local paper is verifying my stats, I think I will be getting an article out (or he is going to have one angry pappy on his hands). About the only thing left now is flyers off to the clinics. I might have been a tad nervous about all this at first. But now, it just feels good. I guess this old boy just needs a primal scream once in awhile (I'll try to keep the volume down).
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Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Sun Apr 13, 2003 7:46 am Post subject: Making a difference and fighting the fight
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Good work plugger!!!!!!!!
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Arlene
Site Admin
Joined: 02 Feb 2003
Posts: 49
Posted: Sun Apr 13, 2003 8:29 am Post subject: Way to go!
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I second that! You
are one of the finest! I am just glad you are who you are,congrads!
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Mon Apr 14, 2003 3:08 am Post subject: Thanks!
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I know you two are, but what am I? (sorry, still a goof) I've learned over the years it can feel good to fight back when you see something like this. I've also learned you can get in trouble if you hit somebody. So I (like many of you), am just trying to throw verbal daggers at this.
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Mon Apr 21, 2003 11:58 pm Post subject: prepping the battlefield
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(my article appeared in last Thursday's local paper. I had to verify some of the red flags the reporter was worried about. But here is the article as it appeared in the paper. Much of it many of you may have seen before, but I think it is worth an encore. I guess I'm getting impatient waiting for the reporter to pull out the big guns. And I figure if a person sees it once, there is a tendency to forget or dismiss it. See it again, and there is less of a tendency to forget it.)<
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>There is a group of patients in this country that could use your help.<
>Kidney dialysis patients have become an extreme example of what can go wrong<
>with a medical system (see bulleted items below).<
>How can you help? By writing Congress and showing support for a bill many<
>patients and relatives believe will help alleviate this problem, for one<
>thing.<
>The bill is HR 1004, which will pay for more frequent dialysis. We believe<
>an eventual cost savings will happen due to better health of the patient.<
>The problems seen in dialysis can be seen in one form or another in other<
>fields of medicine. Possibly by helping today, you might be helping a<
>friend, a relative or yourself tomorrow.<
>Here, in my opinion, are some of the issues facing dialysis patients.<
>* The death rate for hemodialysis patients in the United States is over 23<
>percent a year, according to a U.S. Renal Data System report. (That's higher<
>than the death rate in combat in Vietnam). This compares with under 10<
>percent a year in other industrialized countries with a variety of<
>health-care systems. Canada, the United Kingdom, Germany, France, and Japan<
>all have much lower mortality rates than the United States.<
>* The difference cannot be accounted for by the fact that we dialysize more<
>patients with complications.<
>* The extra deaths each year amount to about 30,000. This is twice the U.S.<
>homicide rate of 18,000.<
>* A disproportionately large number of dialysis patients are<
>African-American.<
>* Americans are underdialyzed. Dialysis is strictly rationed to three days a<
>week. Other countries provide more dialysis.<
>* Legislation (HR 1004) has been proposed to correct this situation. It was<
>stymied in committee. (There recently has been an effort to revive it.)<
>* The impact of the rationing is that many patients are being treated<
>against medical advice as their doctors would like to prescribe more<
>frequent treatments.<
>* Expected remaining lifetimes of dialysis patients are one-quarter to<
>one-fifth those of the general population.<
>* There is reuse of dialyzers, a procedure that has not been approved by the<
>Food and Drug Administration. It is potentially dangerous as toxic chemicals<
>are used in the cleaning of dialyzers between treatments.<
>* There are inadequate grievance and complaint procedures to ensure the<
>confidentiality of patients and to protect them from retaliation.<
>* There are no national standards for the training of dialysis staff.<
>Technicians have the most contact with patients and often begin work with<
>inadequate education and sporadic training, support and supervision.<
>* There are conflicts of interest throughout the system, with leading<
>regulators, for example, having served on dialysis corporations.<
>* There is little support for rehabilitation of patients - almost no effort<
>to keep them working or getting them back to work; no reward or funds for<
>rehabilitation.<
>* Likewise, there is very little effort spent on helping patients and their<
>families adjust to dialysis. They often begin treatment with little or no<
>orientation on how to cope with the process.<
>(Thanks to Dr. Robert Sollod, patient and psychologist, for the bulleted<
>items.)<
>I've put together a Web site for people who may not know anything about<
>dialysis but may care about the issues. (It has a link for writing Congress<
>at the bottom of the main page). The site is<
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>sky.prohosting.com/cschwab/ <
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>
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plugger
Joined: 11 Jan 2003
Posts: 258
Posted: Sat May 10, 2003 4:15 am Post subject: writing presidential candidates
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Since there is already a list of presidential candidates, I thought it might be a good idea to write some and let them know about an area of healthcare gone amuck (dialysis). So that is what I did this morning. I even wrote President Bush (I have to give the guy a chance to straighten things out). I found most of them at congress.org/congressorg/home/ . Here is the list I have (there is also the Rev. Sharpton, but he is well aware of the situation - we should all be grateful for his help)<
><
>Carol Moseley Braun<
>www.moseley-
aun.org/ <
>Howard Dean<
>www.deanforamerica.com/ <
>Sen. John Edwards<
>Sen. Richard Gephardt<
>Sen. Bob Graham<
>Sen. John Kerry<
>Sen. Joseph Lieberman<
>Sen. John McCain<
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