We Need a Revolution in Dialysis Treatment

This blog post was made by Henning Sondergaard on August 15th, 2019.
We Need a Revolution in Dialysis Treatment

Imagine this scenario: a scan shows you have a cancerous tumor. You are prescribed chemotherapy—but only enough for the tumor stay the same size as it is now. You have to come in every other day for your substandard chemo, and for the rest of that day as well as the following day, you feel awful and unable to do anything. This goes on for a number of years. You never get better, and your tumor just sits there while you wither away from the treatments. This goes on for about 5 years and finally you die from malnutrition and general poor health.

Now imagine this scenario: a doctor finds out you have diabetes. He sends you to a specialist who recommends that you get only enough insulin to maintain your present—way too high—blood sugar level. He also offhandedly tells you to eat normally, but limit your intake of simple sugars to a certain level. He doesn't give you an appointment with a dietitian or any other way for you to inform yourself about your diet. You live with your high blood sugar for about a year, your eyesight gets constantly worse, your feet rot away, and your kidneys are about to give up. One day your heart has had it and you die in your bed.

These two scenarios seem outrageous to me! I know of nobody who would ever even think of not giving someone with diabetes or cancer a treatment that makes them better, if not the best possible treatment regimen. I do know that people with diabetes have a hard time in the US, but as far as I know it is usually due to the lack of access or affordable medicine rather than poor treatment regimens from doctors after the disease is made known to them.

But, all over the world we treat people on dialysis extremely poorly. We have done so since the advent of in-center dialysis, based on a cost-benefit scheme dating back to the late 1960s when in-center treatments were extremely expensive and way poorer than they are now. We all know that in-center dialysis to this day is the absolute minimum needed to stay alive for just long enough not to embarrass the healthcare professionals and expose the extremely bad outcomes we see there. Just enough to keep people alive. This is not just accepted by the vast majority in the field. It is the norm.

It is completely mindboggling to me that anyone working in dialysis accept this fact. Yet, they do.

How can they go to work every day and deliver what they must know is an inferior treatment? How can they disregard that their patients have an average lifespan of 5-10 years, while those on a home treatment modality have a much longer life expectancy?

Yes, they are educated into thinking that this is the norm. But how can they be so blind to the facts? Hundreds—if not thousands—of scientific articles show how more treatment time is better for every aspect of dialysis, be it volume control or removal of toxins from the blood. The knowledge is right there under their noses, and they choose to completely ignore it.

Why is there no outcry from patients and professionals alike? Imagine if we offered the same poor treatment to the abovementioned diseases or any other chronic illness? That would never happen. Nobody would accept it.

We need a revolution in dialysis treatment. And I know that a lot of people in the US are putting faith in the apparent movement your government has come up with. But unless there is a united voice among patients and professionals demanding better health conditions and better survival nothing is going to happen. You need to stand up united to make the change. And the same goes for us who live in the rest of the world, so we don't fall behind. There are but one or two nations where the potential for home treatment might be saturated. But that is one or two out of the 195 nations recognized by the UN. It is appalling, to say the least.

Comments

  • Donna Quantrell

    Oct 4, 2019 9:42 PM

    In the 70’s I lived next door to a wife who put her husband on the hemo dialysis machine 3 nights a week. He was a patient of the Northwest Kidney Center at WA State University in Seattle, WA
    Now I am starting dialysis myself and have chosen PD Dialysis at home.

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  • David Rosenbloom

    Aug 23, 2019 5:09 PM

    We can't talk about an ESRD treatment revolution unless we talk about money - the one item which inhibits progress so long as it is the ruling factor in decision making. And so it has been since the 1970s when CMS began paying for treatment and two companies set out to dominated the U.S. dialysis market.

    We hear all the time that there is not enough money to fund training for home dialysis, or to hire enough home dialysis nurses, and on and on....

    Well, I learned two things today thanks to RenalWeb. There is enough money. It's just going to insure that the duopoly continues undisturbed.

    1) Kent Thiry, board chairman of DaVita Inc., was the highest-paid healthcare executive in 2018 with $32 million in total adjusted compensation. Thiry saw his salary more than double with a 108.9% increase and the sharpest year-over-year rise in stock and options to $26.6 million.

    2) DaVita and Fresenius spent a cool $100 million last year fighting an obscure bill in the California legislature which would prohibit switching patients from Medicare to private insurance and having that insurance paid for by "contributions" from the American Kidney Fund, which receives 80% of its support from the dialysis duopoly (Fresenius and DaVita). It is a scheme that greatly benefits the two companies, who control 70% of the U.S. dialysis market.

    I bet $132 million is enough funding for several years to get a roaring home dialysis program going in the U.S. We can begin by finally filling an anti-trust suit against DaVita and Fresenius, breaking up both companies into state-sized non-profits with local control. We did it a 109 years ago when the Standard Oil trust was busted. It could become a real possibility after the 2020 election.

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  • JR

    Aug 21, 2019 8:10 AM

    TRIFERIC !!!

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  • Amanda Wilson

    Aug 17, 2019 9:33 PM

    Spot on Henning, yet again.

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    • Henning Sondergaard

      Aug 19, 2019 6:12 PM

      Thank you, Amanda

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  • JoAnn Soyka

    Aug 16, 2019 11:00 PM

    Sorry, we do home hemo because the in-centers in florida are hideous places where families don't exist. When in another state I won't mention, we go to dialysis together and it is just another part of our day. We talk, discuss business, watch the news, together and share breakfast. When I become incapable of sticking two needles in my husband's arm we will move to that state and go to that compasionate clinic. In the meantime, it is in my living will that I prefer to die if faced with dialysis. It is my opinion, people should prefer to face death rather than dialysis. Maybe if more people did this, the law would be changed to harvest kidneys (and other organs) UNLESS specifically denied.

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  • Gale Schulke

    Aug 16, 2019 10:59 AM

    In 2005 I switched from being a nurse in center to Home care. I would never go back. It was so depressing to see these people day in and day out slowly dying. I had nothing to give them that would change the course of their lives. Home offered hope. Home offered an alternative that was saving lives. Home offered people the opportunity to have a somewhat normal life. I will continue to be an advocate for home modalities long after I retire. Working at Satellite, whose focus has always been to push for Home dialysis, has been a breath of fresh air at the end of my career.

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    • Henning Sondergaard

      Aug 16, 2019 5:55 PM

      Gale, I am so glad you found your calling. It is never too late to do so. And if you can save but one life by making someone’s existence more bearable you have done great in this world.
      Thanks for being there for us. You are a great voice in our little community. And assuming you bring the same attitude to your patients, I will have to say they are really lucky

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      • Amanda Wilson

        Aug 17, 2019 9:31 PM

        Gale, there need to be more of people like you are passionate about offering the best of care for their patients.

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    • Dori

      Aug 16, 2019 12:10 PM

      I wish everyone could have you or someone with your passion as a home dialysis nurse!

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  • John Agar

    Aug 16, 2019 7:49 AM

    Henning .. good, wonderful Henning ..
    Both examples you give are unchallengeable.
    Every question you ask is unquestionable.
    Every obvious answer remains unanswered.
    And, while a few have tried, few have listened.
    I share your pain and your frustration.
    But I have no more answers than you.

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    • Henning Sondergaard

      Aug 16, 2019 5:51 PM

      John, I don’t know if I should thank you for your support or throw my hands in the air in frustration.
      But I do thing it takes a joined effort. You, as healthcare professionals. Us, as patients. And the few industry folks who are not in it purely for the money - if they exist. Without a united voice and common goal we are not going to wake up the powers that be. Those powers might be different in various parts of the world. But our effort should be united across borders. We are responsible for showing that there is a different - and much healthier - way.
      I believe you do it where you are. I know I do it where I am. I also know we are making ripples across the oceans, even when we are unaware of it ourselves.
      Am I being too optimistic? Perhaps. But I need that as my fuel for going on.

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