realdialysisethics
Joined: 06 Jan 2003
Posts: 41
PostPosted: Tue Jun 17, 2003 3:14 pm Post subject: Receiving Unrequested Magazines from National Org.
Over the past year we have been bombarded with calls asking, "who is giving out my mailing address? How did I start receiving these magazines related to dialysis and connected to national organizations?" We have spoken with our Attorney's and they too are curious just who is giving out our names and address.<
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>The Attorney's further stated that the policy of government connected organization or any dialysis unit giving out our names and address to any organization for any reason without the patients consent is clearly a violation of our Federal Privacy Rights. Further, this action is a
each of Patient confidentiality and
eaks the new laws that are currently in place. They also suggested, that we may have the ability to go for a class action suit for all the offenders. <
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>So we are asking our patients to participate in an informal poll as to whether or not you are receiving any mailings on or about dialysis or from drug companies without your requesting them.<
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>Let me thank you in advance for your participation. This type of information helps DEO correct and redesign the Dialysis Industry into a patient protected and patient driven arena.<
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>We will keep you informed of our findings.<
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> Edited by: realdialysisethics at: 6/17/03 7:21 pm<
>
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Joined: 11 Feb 2003
Posts: 46
PostPosted: Wed Jun 18, 2003 1:17 pm Post subject: The NKF and Drug company's
Yes, out of now where I started receiving a News letter from the National Kidney Foundation, then it stopped.<
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>Then, the first time I was placed on a transplant list I started receiving information from a drug company about immunosuppressives and one other company on "Life after transplant". I checked with my transplant clinic and they had nothing to do with it. <
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>Hope this helps.
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Lin
Joined: 28 Oct 2002
Posts: 337
PostPosted: Thu Jun 19, 2003 12:21 am Post subject: Magazines out of no where!
I received a NKF book, one of their "stages" books, which contained a post card I could mail in to receive more booklets; I didn't mail it in, as the info. is available on line anyway.<
>The unit I go to had a newsletter put out under the control of dietician. In it was always a list of names complete with birthdates. When we were told we could no longer write our first and last names with weights on weight board (privacy act/Medicare rule) I questioned the privacy issue of putting my name and birthdate in the letter without my permission. I was told it would no longer happen. Now we don't even get newsletters, hmmmm! I wonder! Lin. (unit rebel lol)
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RedheadedReptile
Joined: 09 Mar 2003
Posts: 69
PostPosted: Thu Jun 19, 2003 8:59 am Post subject: I get NKF Family Focus...
... but I can't join the suit because I can't remember whether I signed up for it or not... must be the dialysis!
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leadsag
Joined: 31 Oct 2002
Posts: 263
PostPosted: Thu Jun 19, 2003 9:03 am Post subject: same here
Same here - I get Family focus and Capital kidney Connection but do not recall if I requested them or not.<
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>Find it interesting how few articles NKF Family focus has on dialysis issues. Mostly transplant and diabites articles as of late.
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tedesa
Joined: 24 Jun 2003
Posts: 3
PostPosted: Tue Jun 24, 2003 2:07 pm Post subject: If you received any benefit from
the local Kidney Foundation [usually a medic alert
acelet], ever went to a patient education event, applied for anything or any information from the NKF, AAKP, AKF, etc etc then chances are you are on their mailing list, and get publications.
