realdialysisethics
Joined: 06 Jan 2003
Posts: 41
Posted: Sat Nov 08, 2003 9:41 am Post subject: OUR POSITION
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The incidents of the past month have been in our favor.<
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>Based on Senator Grassley letter, he seems to be outraged that there have been no significant improvements since the Senate hearings in 2000.We are not suprised that there have been no changes. Generally CONGRESS,CMS, ESRD NETWORKS,and STATE SURVEY AGENCIES have all failed the patients.Congressional action is needed to make some of the changes necessary to improve quality of care to dialysis patients. Until such action is taken changes will be minimal and will not substantually make a dent in delivering care to dialysis patients.<
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>It is our position that the following changes must be made: <
>1. Close oversight of the ESRD NETWORKS and public disclosures of membership/affiliations and their activities..<
>2. Establishment of an impartial body to address and resolve patient complaint,grievances and dismissals,and immediate reporting of dismissals to this committee.<
>3. Abolishment of AMIGENS congressal protection and the industry profits there from.<
>4. Re-evaluation of reuse by a neutral enity.<
>5. On going education related to treatment options,reuse,medicines,nutrition,etc.<
>6. Facility inspections every other year with public disclosure of results including posting on dialysis compare.<
>7. Provision of information on all treatment options with patient rights to exercise choice.<
>8. Re evaluation of minimal requirement for technician and evidence of preformance level prior to release on the floor.<
>9. Elimination of Nephrologist the immunity from the Stark Law, which had giving them "safe harbor" to profit off their patients and by which the industry can legally put the patients on the stock market.<
>10. Respect for patient rights,included in treatments to the fullest that they desire.<
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>We will be watching to see CMS" action as it relates to that contained in Sen Grassley's letter as well as our list above.<
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>DEO is confident, as many others, including patients,are lending support to our cause. We have been told<
>that this is do able as the Senate Committee on Finance is only one committee. We are promised two others in congress, and much help to our cause in DC,as well as other reputable DC players.<
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>Remember this is an election year, we have MANY who are outraged at the Committees stand contrary to the committees intent with cancellation of the Senate hearings and sketcy CNN news airing, the stand worked in our favor. Senator Grassley has been aware of it all since 1998.
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Joined: 16 Feb 2003
Posts: 11
Posted: Sat Nov 08, 2003 11:50 am Post subject: High patient staff ratios
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Any progress with understaffing?
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Sat Nov 08, 2003 2:18 pm Post subject: changes
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the major cause in my opinion of death in dialysis is undertreatment. until the data is taken from back of the machine and complied in a central computer this will continue. taken from grassley,s letter there is a common practice to cut the time of the run. just like in the death campscutting a inmate just 200 calories caused a drastic increase in death rate becaused they were on the edge so cutting the run time of a patient very much increases their mortality rate. the dialysis patient is on the edge just like the imates in the death camps. this is my opinion only. and to be used for discussion.
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say what
Joined: 11 Mar 2003
Posts: 29
Posted: Sat Nov 08, 2003 5:36 pm Post subject: Didnt say anything?
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Of course it didnt say anything. It was soft peddled for the public. No dumped or abused patients allowed.Only minor stuff and no substance.<
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>I am glad it came down like that. Imagine having to explain to the public that he knew it would take hearings and he couldnt do that. My God, he comes alive at election time for more industry money.He took it last election.<
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>The expose will uncover this, my point is that he played right into DEO's hand. He once again did nothing and planned to do nothing. He has cooked his own goose. He didnt use any patients that were abused. He soft peddled the story, then hammered Scully and the public wont see that letter, but they will.He writes a scathing letter to Scully, but Scully wasnt there in 2000. He is a piece of work. He is the main reason that the corruption is continued, he knows that it would take Senate hearings to clean up the industry, he cant do that, he was bought last election.<
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>But he is only one Senator, we stated before that this was only a hiccup! Nothing changed only the fact that he showed what he was made of. I am glad that it came down this way. It makes a better chapter in the expose!<
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three years
Joined: 09 Nov 2003
Posts: 1
Posted: Sun Nov 09, 2003 2:19 am Post subject: none
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We have been waiting 3 years for the senate and 3 years for the expose we keep hearing about. How many patients have been dumped while we waited for the expose? Is someone waiting on the article until it is they feel they can gain a politcal advantage?
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FYI
Joined: 15 Feb 2003
Posts: 72
Posted: Sun Nov 09, 2003 6:27 am Post subject: expose and hearings
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We have nothing to do with when the expose is coming out as well as the articles. We have no control over the reporter. He has told us that it will be out before the election.<
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>I am grateful that someone has taken this seriously and is as outraged as we are, and is working to see that it ends. When its here its here. Many of our patients on this board have been interviewed and filmed. They feel confident with him. What are you doing to help out?<
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>This has been going on for 30 years and no one has even help the patients out, we are doing something about it. Why is the AAKP just now getting involved by doing press release, why have they not been fighting for the patients all along. What have they done,the NKF and the ESRD Networks to help the patients who are abused and dumped. In the beginning we asked AAKP as the NKF to fight and they were not interested in doing the right thing. On many of the issues they ended up siding with the industry.<
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>As far as the Senate, we havent been waiting for them. The Senate Committee has shown their colors and we had not stopped in five years. We have two hearings on the house side early next year. We also have other lobbiest and power players who are helping us<
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>We are not in control of when these other people are ready to move, we are ready to assist them at a moments notice. Mean while we are continuing to educate and point them in the direction of facts and documents.\<
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>Our experience in the past the AAKP comes in and tries to take over to push their own agendas,which often are not in the best interest of dialysis patients nationwide. We have a wide range of patients with various experiences that cover the whole range of DEO's dialysis issues. These patients will be participating in the meetings early next year.Our issues will not be diluted again. The Civil and Human Rights, safety, education,and choices will be among the issues that our patients will address. These issues effect patients all over our nation not just a select few.<
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>We must remember and always honor those patients who have fought with us from the beginning.Through fear of retaliation,retribution,and being dumped they have rallied around,supported and fought have even paid the ultimate price with their lives. Without the patients and their trust in us and the paper trail they have provided, DEO would not have been able to help those patients around the nation. By their belief and sacrifice, they have shown a courage
beyond compare.<
><
>Arlene
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Mon Nov 10, 2003 7:56 am Post subject: the AAKP
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I?m proud to be a member of the American Association of Kidney Patients. I attended the AAKP?s annual convention last Labor Day weekend; many of the people I met are, like me, CKD success stories and like me, attended the convention to share their experiences and cele
ate life with others who are traveling the same road. In addition there were a significant number of individuals who had just started dialysis or had just been diagnosed with diminished kidney function. Membership in the AAKP and attendance at the convention provided these individuals with heaps of information about CKD and how the ESRD care delivery system is organized in the US. More importantly membership in the AAKP provides these CKD newbies with the opportunity to connect with veteran dialysis consumers and be inspired to live a full life despite needing some form of renal replacement therapy.<
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>I understand that my experience dealing with CKD and the treatment opportunities I have are not universally available. That is why I am here. I do not see the value in disparaging individuals that are doing well. Even if the ESRD care delivery system was reformed so that DEO was no longer needed, the challenges facing anyone with CKD would remain. No matter how good renal care gets in this country, people with CKD will still benefit from joining the AAKP.<
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>As to the role the AAKP has in national policy, it is incorrect to say the AAKP is new to this, the AAKP has a number of positions that speak to issues from reimbursement to organ donation and a 30 year history of working to improve the lives of individuals with CKD. I agree that the AAKP, like everyone involved with ESRD care in this country, has work to do, issues to face and plenty of opportunity to improve CKD outcomes. There are a number of reasons the AAKP might take a pass on an issue. If the AAKP doesn?t take a position on an issue important to you it doesn?t invalidate what you are doing, it doesn?t mean the issue is unimportant, it doesn?t preclude you from working for change. <
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>Like anyone else the AAKP has to prioritize and pick it?s battles. As a national organization governed by volunteers the AAKP must jealously guard it?s most important asset ? the time and energy of it?s members. Nobody is a full time dialysis patient. We are individuals with lives and challenges. We donate the energy and resources we have to give, in the hope that we will be making CKD a bit easier for the next person. No one gets a free ride from CKD, we do what we can. Can the AAKP do more? Yes. Can I do more? Yes. But who among us could answer that question any other way?<
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dialysis patient
Joined: 10 Feb 2003
Posts: 5
Posted: Mon Nov 10, 2003 8:18 am Post subject: Contract & dumpings
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Where has the AAKP and the NKF been when patients where thrown out of there clinics and left to die? This is a very large issue to many of us. But these two huge organizations just turned their backs and let the industry abuse patients and pretend this does not happen.
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Mon Nov 10, 2003 9:00 am Post subject: Re: Dialysis Patient
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Neither the NKF or the AAKP are law enforcement organizations. Below are the relevant sections of the Federal Register. It is CMS? duty to enforce their conditions of coverage. I understand that dismissals do occur for reasons that are not supported by law, however I do not think the AAKP, as an organization, has a role here. In the situation you describe what role do you see for either the NKF or the AAKP? <
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>[Code of Federal Regulations]<
>[Title 42, Volume 2]<
>[Revised as of October 1, 2002]<
>From the U.S. Government Printing Office via GPO Access<
>[CITE: 42CFR405]<
>...<
>Sec. 405.2138 Condition: Patients' rights and responsibilities.<
>...<
> [[Page 149]]<
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> (b) Standard: participation in planning. All patients treated in the facility:<
> (1) Are afforded the opportunity to participate in the planning of their medical treatment and to refuse to participate in experimental research;<
> (2) Are transferred or discharged only for medical reasons or for the patient's welfare or that of other patients, or for nonpayment of fees (except as prohibited by title XVIII of the Social Security Act), <
>and are given advance notice to ensure orderly transfer or discharge.<
> (c) Standard: respect and dignity. All patients are treated with consideration, respect, and full recognition of their individuality and personal needs, including the need for privacy in treatment. Provision is made for translators where a significant number of patients exhibit language barriers.<
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>...<
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> (e) Standard: grievance mechanism. All patients are encouraged and assisted to understand and exercise their rights. Grievances and recommended changes in policies and services may be addressed to facility staff, administration, the network organization, and agencies or regulatory bodies with jurisdiction over the facility, through any representative of the patient's choice, without restraint or interference, and without fear of discrimination or reprisal.<
><
>
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