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    « Wall Street Journal spotlights home dialysis options | Main | Are American Dialysis Patients the new Tuskegee Syphilis Group? »

    October 12, 2010

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    Kamal D Shah

    Thanks for the post Peter! It is really great that you NxStage users are meeting at Las Vegas. I keep reading about all these great things you guys are able to do and then wonder when, oh when, will the NxStage machine come to India!

    David L. Rosenbloom


    Hats off to Rich Berkowitz and Brian Riddle for organizing, and all the other NxStagers who participated, for producing a fabulous 1st annual conference in Las Vegas.

    It went beyond being a success; it was pathbreaking. Never before has such a unified, well-informed and activistic group of dialyzors, care partners and leading nephrologists joined forces to vividly illustrate and irrefutably prove the need for a quantum shift in the way kidney dialysis is administered in the United States.

    The days of so-called "adequate" 3-day-a-week, in-center dialysis, with its intolerable 20% annual death rate, are numbered. The reality of optimal dialysis, at home with daily treatments, safer, healthier outcomes and longer life is now. It's time for the dialysis industry and those nay-saying medical practitioners in the U.S. to come clean, face facts and change their ways. The one-size-fits-all approach to in-center dialysis is a slow death sentence. It is inadequate and unethical, especially when the recent academic studies to which Peter alludes, show that daily home-based dialysis is not only more effective and safer, but returns people with kidney failure to full, active lives with a bright future ahead of them. Kidney failure no long need be a death sentence in America.

    I know, I’m living of proof of it.

    Brian Riddle

    Peter,

    Thanks for all of the support and for participating in the conference. I would also like to thank all of the other participants and guests. If it wasn't for all of you, the NxStageUsers Conference would not have been able to become a reality and a hug success!!

    John Agar

    To all at the NxStageUsers Conference

    My thanks (and especially to Rich Berkowitz who drove the conference and took time to rehearse my via-Skype contribution) for allowing me to be a part of it and to contribute to it.

    I know some of the things I said may have been controversial to some and even against many of the common perceptions and accepted ways over there in the US, but ... that you allowed me to put the case for a more patient-oriented approach to evaluating the 'goodness' of dialysis ... was indeed an honour.

    My best wishes to all who attended. I hope some of my contribution gave food for thought.

    John Agar
    Geelong, Australia

    www.facebook.com/profile.php?id=1206800151

    As Peter eloquently said, “the heart of the conference is the pioneering spirit of all of the NxStage users waging the battle against American style dialysis by taking it home”. It was astounding to see dialyzors and care partners coming together telling stories and sharing hopes. Many were totally isolated from a community that understand and live what they are going through. They also got the rare opportunity to hear and learn from a world caliber group of nephrologists who are evangelists for longer and more frequent home dialysis. Everyone involved became more empowered because of the Meet Up and Conference.

    The conference is behind us. So the real issue now is where do we go? If we truly are looking for a patient-centered model of care and not the old medical-centered model, we need to get better organized. We need to come together and demand better care as Peter has suggested. We need to take our concerns to every body and person that matters and has a certain control over our lives. We don’t want to do without them, but to make them more responsive to our needs. Whether it the Federal government, including the Legislative and Executive branches (CMS included), our State Governments, our hospitals and doctors, advocacy is the only workable approach. We are much stronger in numbers. It’s the patient voice that must ring clear.

    It’s NxStageUsers’ intention to help lead the movement of home dialyzors toward the goal of changing the face of dialysis in the United States. Peter is right, “It is time that the patients themselves take center stage in demanding better dialysis outcomes that can truly only be achieved through home hemodialysis in those patients unable to undergo renal transplantation. It is an alternative whose time is now”.

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