MORE SENATE HEARINGS
Joined: 11 Sep 2003
Posts: 1
Posted: Thu Sep 11, 2003 8:03 am Post subject: SENATE COMMITTEE ON FINANCE HOLDING IN OCTOBER
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Request was received today from the Congressional Senate Finance Committee investigator informing us that a hearing will be held in October. Purposes of the hearing will be to investigate quality of care, patients rights,abuses, CMS, ESRD Network and State Survey Agencies.The Committe is interested in hearing from the patients regarding these issues.<
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>DEO has been asked to furnish telephone numbers of those patients receptive to a call from the investigators to speak on their dialysis experiences. We have been assured that phone numbers and patient idenites will be kept confidential.Additionally they have asked for our participation in finding the patients to speak at the hearing. We realize that we are an anonmymous board, therefore we are not privilidge to personal identification of many that post.<
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>If any of you are interested in sharing your concerns with the investigators, To email concerns to me to be compiled in a presentation to the Senate Finance Committee. If you are interested in speaking directily with the investigator you may provide your telephone number to me and I will see that the investigator will have it. <
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>After providing telephone numbers to the investigators and direct contact, the investigators will select 2 patients after talking with them about experiences. They will select two patients to testify before the Senate Finance Committee. <
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>Any contact with us needs to be at the following email or phone.<
>arlene@dialysisethics.org or amullin@uswest.net<
>or call at 360-604-4440, or 360-721-6477. Your idenity will be kept confidential<
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>We also will be compiling a booklet from you to them, as part of our presentation. We all have a responsibility to help change this industry and to ensure the abuse ends.<
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>Deadline for telephone numbers of those open to speak with the investigator is TUES, Sept 16.<
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>It is requested that patients an/or family members who want to share experiences email such to me by Oct 1, 2003. These experiences will be compiled to be presented to the Senate Finance Committee.<
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>Arlene
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looking at this
Joined: 19 Aug 2003
Posts: 3
Posted: Thu Sep 11, 2003 10:03 am Post subject: Senator Grassley
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Is this committee headed by the same Senator Grassley that failed to follow through with us after the 2000 Hearings on Dialysis?
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Thu Sep 11, 2003 10:52 am Post subject: Senate
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Do not know if it is headed by the same people but I doubt it. Also, note that elections are coming up soon so many promises are made. We have seen it before.
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Opinion
Joined: 17 Jan 2003
Posts: 13
Posted: Thu Sep 11, 2003 12:20 pm Post subject: SENATE HEARINGS AGAIN
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It is good that the hearings are happening. However it was made very clear that the trust in the government has been less than trustworthy. We have been through this door before.. But we need to go be an active part of this hearing. If we dont, then we have shut the door and we have no one else to blame. To not go to the table and see what is on the menu will be our faults.<
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>The Public Awareness will continue as it was before. We will continue to go forward with this journey. Nothing will change, except the fact that MAYBE the government finally got it. It is election year and we will not wait for more promises that havent happened with the last hearings. We will be an active part in, but we will continue to be active in the Public Awareness Arena. The more days that go by, the more fatalities there will be. We need to have this corrected.<
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>Arlene
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yep
Joined: 13 Feb 2003
Posts: 2
Posted: Fri Sep 12, 2003 5:28 am Post subject: New Hearings
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These hearings are headed up by the same Senators that did our hearings 3 years ago. They didn't do anything then and they won't do anything now. <
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>It is after all an election year so they are looking for ways to make themselves look good and maybe get some TV time. This way they can answer, 'We are having, (or had) hearings on that and are looking into it now'.<
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>Well it is way past time for that. They had 3 years to do something about it and they haven't. Nor did they do anything to protect the one witness that has since paid the ultimate price. No my friends, it is another horse and pony show. :">
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Yep your probably right
Joined: 12 Sep 2003
Posts: 1
Posted: Fri Sep 12, 2003 6:45 am Post subject: Horse and Pony
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No one is more frustrated with the government than I am. Do I trust them to do the right thing? Will be suprised if they do. But, this is an election year as was the last hearing we had in 2000. Nothing came of that hearing but a lot of lost lives and frustrations. TO see our Senators come alive with the microphone and act out in a moment of passion to have it disappear as fast as the camera went off. So I am perplexed at the recent purposal, but we will provide names and numbers and will give a written response from DEO....the proof isnt in the hearings, but what action is taken. The ESRD Networks need to be revamped and the patient complaints need to be taken away from them, I personally feel they are the reason the industry is in shambles...self policing never works.<
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>i for one will continue on the path of public awareness we will continue to advocate for every patient that has been dumped, abused and harrassed in this so called field of medicine. Once shame on you, twice shame on us. We will do what we need to do with the hearing and the patients concerns....how much information does one
ing the emperor, when they realize that compiling documentation and Federal Investigations again and again and nothing to date has changed. It may or may not be a horse and pony show, but will send our representatives there, but will continue to put our efforts in a forward motion and realize that they need to be accountable, but a year is too long.<
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>Safe Harbor needs to be gone and the Network. Standards of Care,,,,this they can do at the hearings. Let see if they can stand up to the industry and not take another Amigen contribution for this set of hearings.<
>The proof is in stopping this insanity now.
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TIPPER
Joined: 09 Jan 2003
Posts: 7
Posted: Fri Sep 12, 2003 1:49 pm Post subject: I think.................
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Senator Grassley also participated in the hearings od 1986 for dialysis. I might add he still didn't do anything.<
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Today is a new day
Joined: 13 Sep 2003
Posts: 1
Posted: Sat Sep 13, 2003 1:35 am Post subject: Take your chances
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Let's get off the pessimistic attitude. I agree it is probably warranted but today is a new day and it will do no harm for patients to try and co-operate and give their experiences instead of killing the messengers. No one knows how many times the stories will have to be repeated until something is done. Just as it took a 911 to aggressively pursue terroist; it may take a lot of hearing and stories to get action on standards of care. Patients rights. and a true advocate for patients not the networks.
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FYI
Joined: 15 Feb 2003
Posts: 72
Posted: Sat Sep 13, 2003 4:41 am Post subject: Pessimistic mode?
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I dont think it is necessarily a pessimistic mode....it clearly is and has been a reality with our past experiences. However, we are still going forward with the hearings and participating in them and realize that not to do this would be a mistake. <
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>We are simply stating that we still continue on the path that we have been on to evoke changes in this industry. To stop Public Awareness and Law suits would be a mistake. To put all our eggs in one basket as we did with great hopes with the hearing in 2000.<
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>Also the other hearings were 1 year before election, with many promises made and none kept. The Senator Grassley DID take Amigen money for his re-election fund, this is a reality, the article is on the site.<
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>All we are saying is that we have been in the arena before, and will send new patients to enter the arena, and we will write a response and continue on with pressure in other areas. We caught off guard once: we will not do it again. The proof is in the governments action and not to stall for more time in an election year again. Its now or it will take another 3 years to see any changes. But it is what it is.<
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>Patients and family members please use this email, as the other one is down. amullin@uswest.net or 360-604-4440<
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>Arlene
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leadsag
Joined: 31 Oct 2002
Posts: 263
Posted: Sat Sep 13, 2003 7:12 am Post subject: None
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In reponse to today is a new day....The patients are being asked to come forward to speak to the senate. Do you recall what happen to at last time to one of the patients that came forward? You can't ask him but I am sure his relatives would be glad to speak with you!!!<
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>In the region I am in one of the Recommendations<
>For Termination of Dialysis Services is "slanderous and/or libelous statements regarding staff members of the facility, the operation of the facility". Will testimony to the Senate qualify? And if it does, the Nephrology group in this area also OWNS and operates the hospital in patient so I doubt you could even get dialysis in an emergeny situation.
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FYI
Joined: 15 Feb 2003
Posts: 72
Posted: Sat Sep 13, 2003 7:25 am Post subject: In response
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Many patients due to our last Senate witness, when Brent was told that harassment and retaliation would be dealt with by the Senate Committee and they would protect him with the full extent of the law.<
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>Many patients are emailing and am pasting thier comments to the investigator and will be sending them straight up. This is another way around it. We are providing the information in this way also. Only DEO knows the names. Many have felt safer to talk to the journalist in order to have their stories also come out in the Public Awareness.<
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>Each patient is given the choice that emails us...write it out and we keep the names out,if you feel better giving it to a journalist,,,let us know that also.<
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>Arlene
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