Visit to the Aksys Corporate Headquarters

Discussions for Patients, Family, and Friends HD For Patients
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This morning I had the pleasure of visiting the Aksys Corporate headquarters in Lincolnshire Illinois. As you could imagine it is quite an operation.

A little background - the Aksys (Automated Kidney SYStem) PHD (Personal Home Dialysis) System ( http://www.aksys.com/phd/ ) is a dialysis machine that is just for more frequent home hemo dialysis. The PHD was approved for use by the US Government two years ago and I have been using it ever since. I think the Aksys offers a number of features of benefit to dialysis consumers and I have been very happy with my treatments.

I do everything myself - I live alone - and typically dialyze six nights a week for three hours. In May/June I participated in a study that had me dialyzing five nights a week for 8 hours which as far as I know showed that the PHD could be used as a daily nocturnal machine. So in the spirit of full disclosure I did receive a check for participating in the study. I have also worked with Aksys to demonstrate their machine at the last Annual Dialysis Conference in San Antonio.

In San Antonio Aksys set up one of their machines at a local clinic and I dialyzed there two nights in a row demonstrating putting myself on and pointing out the machine’s features. Being able to dialyze on a short daily schedule was payment enough in San Antonio - no cash changed hands - my point is that I am a big fan of the PHD, have worked on two studies for them but it would not be fair to say that I am on their payroll. I just think it is very empowering technology and I am grateful that they worked so hard to bring it to market. It is likely that I am their biggest fan.

Today during my visit to Aksys I spoke for a few minutes to a group of employees - about thirty - that gathered in their cafeteria. As a counter point to myself I used an article that was posted on the web a few days ago. Here is a link to the article:
http://www.milforddailynews.com/localRegional/view.bg?articleid=52063
It is titled Dialysis sustains life but little else I thought it was an awful article. Well maybe awful is not the right word I thought it was too, too negative. And when I read the article I thought the author missed the real story. Basically it is a pro transplant article that gives the reader the impression that dialysis is a fate nearly worse than death. However, in reading the article it mentions that the individual quoted - who is unable to enjoy the simplest of life’s pleasures - dialyzed three days a week for three hours at a time. That, in my personally informed opinion, is not enough dialysis for anyone without any renal function and who weighs over 70 pounds, so it is no wonder the guy could no longer manage a round of golf. The author missed the real story. The real question is “Why is the amount of dialysis available to an individual in the United States dependent on one’s zip code?” Why was the person on dialysis quoted in the article getting only half as much dialysis as me even though we are both, most likely, on Medicare?

So my point to the folks at Aksys was that I may not be an “average” long term dialysis consumer (because of the treatment choices offered at most US incenter facilities) but I am an average dialysis consumer who is allowed to use the Aksys PHD. My message to them was that their work, their product, is changing lives. Actually their product prevents lives from changing. By dialyzing more frequently a person gets their life back. They get the life they were meant to live.

After my general talk I got to eat lunch with a couple of the people who’re working to promote the use of the PHD and we talked about what strategies might work to get more individuals taking control of their own dialysis treatments and living healthier lives. I was and 'am a bit stumped.

Of course the first issue is making the PHD available to all who would like to try more frequent home dialysis. But even in Seattle - where I live - it is hard to get people to move from incenter to home treatments. My provider the Northwest Kidney Centers (NKC) serves about 1,200 individuals on dialysis but only about 55 choose hemodialysis at home, with another 80 or so choosing PD. Those numbers should be double. I know for a fact that NKC makes every effort to increase the numbers but yet the lines remain short. So I am afraid I could not offer many ideas on how to get more people interested in dialyzing more frequently as a way to live life more fully.

I really enjoyed my visit. I hope this web site will help spread the word: More dialysis is better!

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Oh Bill, You do get around lol. Thanks for sharing the info. on the AKSYS. If you’ve read any of my posts over the last few years you know I’ve been having a Dicken’s of a time trying to get into doing home hemo. I’ve hit a brick wall with the FMC program, and it’s the only program where I live or anywhere around the area.
I’m at a new center now and would like to see them start a home program, as they currently only offer PD for home pts… With that in mind I would like to know (if you know!) how the cost of the AKSYS compares to the cost of the FMC machines used by most programs? Too, since Medicare and Ins. co. will only pay a per tx. fee, for three txs. a week, how do the units work out the costs? Would it become just a monthly fee comparable to the Medicare fees, or is the pt. charged extra? So far the nurse/manager at the unit where I go has said the cost of running a home program was the factor in determining not to offer it, but I’m hoping to convince them otherwise. If you think the AKSYS is the way to go perhaps the co. could make a pitch to the higher ups. Is the machine FDA approved yet? TY. Love hearing about your travels. Lin.

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Bill, thanks for your report on your experiences with Aksys!..I just went into my local hometowne dialysis clinic which just newly opened this August and had a wonderful chat with Maureen Holland who is heading the home dialysis program there. We chatted a bit about the various home dialysis therapies including Aksys. We also talked a bit about NxStage which really interests me but need more information about it…to this point I’ve come to not being able to make a choice on which method would fit me best…NxStage sound like it might be for me as I wanna travel a few trips to San Cabo Lucas…I also wanna travel a bit within the states to special conventions that I’ve always wanted to go to…

Anyway, I’ll keep you guys posted on what method I choose…

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I’ve done some reading about the Allient Advantage, which also sounds promising, however I believe it’s not (yet!) FDA approved. Lin.

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You can read about many home hemodialysis equipment and products on this website. Aksys is FDA approved as are machines by Fresenius and B Braun. Renal Solutions (Allient) is awaiting FDA approval as is NxStage’s machine (http://www.nxstage.com).

Although Medicare limits payment for dialysis to 3 treatments a week, if a patient has commercial insurance, that company may pay for the number of treatments provided. Many clinics that offer more treatments seem reluctant to bill commercial payers for the extra treatments. I’ve heard them say that they “assume” that because Medicare only pays for 3 treatments that commercial payers will abide by those limits too without asking (or billing and getting denied). I am concerned that the high cost of dialysis could exhaust someone’s lifetime maximum benefits if more treatments are billed to commercial payers. I hope that if Medicare starts to pay more appropriate rates for dialysis and for all the treatments a patient needs to do well that clinics will bill commercial insurance less, but I may be overly optimistic.

When a patient has Medicare, the clinic is not allowed to charge the patient more than the Medicare allowed amount for covered services. I’m not sure what Medicare would say about charging a patient (or his/her commercial insurance) for those treatments that are not Medicare covered. This is something I can try to find out from CMS.

So far as whether home hemo is costly or cost saving, under professional resources, we have a cost bibliography for home hemo. We hope to post a cost model for daily home hemo that could help decision makers see where the breakeven point is. We’ve heard from those that have home hemo programs that they do it because patients do better, are hospitalized less, take fewer medicines and because they believe it’s the right thing to do and will save money in the long run. We’ve also heard that you have to have a critical mass of home patients and they have to stay on home dialysis long enough to make up for the higher cost of assigning one machine to one patient, paying start up costs, etc. Keep checking back and encourage your staff to check out all the professional resources on home HD and PD.

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I have been thinking about Bill’s question how do you get more patients interested in home hemo. Bill points out his center does everything possible
but the lines waiting for home dialysis are still short. From my own experience it would have helped me a lot if I had contact with a patient who was doing nocturnal dialysis through the center I was going to go to. Someone to mentor me through the process. I know one person who was thinking of getting into the program was given my name by the center and he called me several times as questions popped in his head. I also know on the few times I have had a chance to talk to in-center patients they are usually very interested and really start thinking about trying it…but after I leave they are left hanging with no one to talk too as the dialysis staff doesn’t have the experience. I also know when our nephrologist has interns with him, he always tells them dad does slow nocturnal, but talk to me I know more about it than he does; he knows about dialysis but doesn’t know how we deal with it at home. Only the patients can answer that. I wonder if we could somehow get patients to volunteer to mentor other patients and figure out away for them to make contact. It’s one thing to hear from a patient in California doing home dialysis and quite another to actually here from a patients who is the same program you are looking at.

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Missouri has an education program for people whose kidneys are failing and who have not yet started treatment. The National Kidney Foundation’s People Like Us, Live program was modeled after Missouri Kidney Program’s Patient Education Program. One of the best things about PEP (and PLUL) is that when presentations on the treatment options are given by nurses, there are area patients on those treatments who speak about their experiences. Attendees rate these very highly. It’s one thing to hear from professionals who know the mechanics of a procedure and quite another to hear from someone who has actually lived with it.

In this area (Kansas City) we have nocturnal home hemodialysis at two clinics – DCI and FMC – and DCI recently started a daily in-center program. I hope that other area clinics will start nocturnal or daily programs. This might happen as more patients attend PEP classes, hear about nocturnal and/or daily dialysis, and talk with their doctors. Another thing that has happened is that at least one patient has switched to one of the clinics to get nocturnal home hemo. If clinics start to lose patients, they may start to believe that there is interest.

I’d strongly encourage any of you that are doing home hemodialysis to talk with the management at your clinic. Find out if they offer or are planning to offer education to patients with failing kidneys or those who have recently started dialysis. If they do, offer to be a speaker at those classes. Tell about what helped you make the decision to do home hemodialysis and how its worked for you, including what you’ve been able to do that you might not have been able to do if you’d chosen center hemodialysis.

Marty, you’d be a great person to talk about what it’s like to do home hemo as a dialysis partner. If others have dialysis partners that would be willing to share their stories, it could dispel many myths and misconceptions. I have found that patients are reluctant to ask their family or friends to be their dialysis partner and family members believe you need to be a nurse to do home hemodialysis. Even doctors and nurses seem to think that it’s too complicated for non-medical personnel. However, I say if a clinic can train a person who was hired as a technician with no medical background to do hemodialysis on the wide variety of patients that are at a dialysis clinic, it should be easier to train a family member or friend to do hemodialysis one on consistent person with whom they have an emotional bond.

It is key to project the message that home hemodialysis is not rocket science and everyone – patients, nephrologists, primary care doctors, dialysis staff – needs to hear this message. Who else could better carry this message than patients and partners who do it!

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Beth, Maybe other clinics are more receptive to hearing from home patients. But in our area I have contacted all the dialysis centers east of us 200 miles. I have volunteered to talk with patients and I have volunteered to come to support groups and talk. I can only conclude it isn’t something they are interested in their patients hearing about because no one; not one has taken me up on my offer. I think the answer is simple. They simply aren’t prepared to tell patients why they don’t offer any home hemo program. If I had or could get the opportunity to talk; I wouldn’t go the extra, extra, extra mile to pay for a billboard. I think your idea is excellent; just thought you might want to hear from someone who’s tried. I am becoming more and more convinced the break through has got to come from the top down not from the bottom up.

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Marty, you are truly a home dialysis angel! Your commitment to furthering this effort is overwhelming and much appreciated.

I forgot to mention in my last email that you might want to talk with your NKF affiliate to see if they offer People Like Us, Live classes. A community-wide program can be better than one operated by a clinic since it can educate patients about services that a single clinic does not offer. Community programs get patients from local nephrologists, nurses, and social workers (or sometimes patients or families self-refer). The Missouri Kidney Program’s PEP program is always looking for patient (and partner) speakers. Running a patient education program requires some time and energy but they payoff is great – in improved patient knowledge as well as a sense of accomplishment from those who conduct the meetings. If your NKF affiliate does not currently offer PLUL, NKF offers its affiliates the materials to do this worthwhile program and staff at the NKF may take this on if they have help from enough people like you.

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I’ll give the NKF a try in our area and see if I can work through them. My commitment to home dialysis (especially nocturnal) is overwhelming but only because I was so overwhelmed with obstacles when I was trying to help my dad. I made up my mind if I could help it no patient or patient family member would have to go through what I did to get what was suppose to be their CHOICE. Then when I saw the difference in my dad, I thought this just isn’t right at all. All dialysis patients deserve the choice. I’m with Bill Peckman when he says good dialysis shouldn’t depend on your ZIP CODE. Little did I know my 1st obstacle was going to be getting to patients to let them know they had a choice. I thought centers would be delighted their patients could hear from someone with 1st hand experience. Wrong. Do you know I even fax my dad’s labs to nephrologist in the area so they can see for themselves. This is what I get …Your dad is a lucky man! So now it’s Luck and Zip Code. This even get’s better. I got a hold of a local news station and an angel was with me. The news lady had a family member on dialysis. The TV camera and the whole nine yards came to dad’s house and taped me setting up for nocturnal dialysis. (Dad was real pleased when I told him be prepared your going to be on TV). Now here is the clincher; To verify my claims about nocturnal they also interviewed an area nephrologist, his comment was yes, nocturnal patients are healthier but the cost benefits of improved health will benefit the government…not the clinics. End of story. We truly have an uphill battle… but this website has inspired me again.

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Marty I think patient to patient/ caregiver to caregiver contact is the way to go. I participate in our local KEEP classes for pre-dialysis education and since I sign my name on internet posts I am available to anyone with a computer. Many people have contacted me; my experience has been that it is the people who have not started dialysis that are most interested in home treatments but when you are pre-dialysis or just starting dialysis it is very easy to feel overwhelmed. The home population could really grow if people who have been on incenter dialysis for years could be persuaded to go home or at least persuaded to take a hard look at their home hemodialysis options…

I was on in-center dialysis for 11 years (and I was doing well – working, volunteering and traveling) before I went home but I think I’m an exception. The challenge is to find ways for the silent majority of patients, the patients who are doing okay with an in-center regime, to consider their home dialysis options. This is also the group of patients who do not generally attend ESRD related functions, support groups or classes. The challenge is to break through the compartmentalization many people use to deal with ESRD.

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We’re living in a world with cutting edge techology…alot of the patients arriving at dialysis clinic use a public or medical transport service…and I kinda imagine who are more likely to switch to home and from what age group…

Anyway, regardless of what transportation means a patient uses each one of them should not be limited to the cutting edge tech we have today…

The internet as a tool to inform dialysis patients would be nice if available in each dialysis clinic. That way they can come visit this forum and share their thoughts without hindering their dialysis schedules…should it be a requirement that each clinic provide high tech resources for patients? Should a law be made requiring this? Most likely yes I think…

It could be a simple PC monitor with touchscreen in every waiting room showing information about what options patients have for dialysis therapies…it can have a filter where only dialysis related sites can be visited…

Should be so easy to use even a non-techy person can use…

For now I think a great headstart has just begun… :smiley:

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Hi y’all,

Great idea, Gus, and one that Bill Peckham actually pioneered at the Northwest Kidney Centers! Through the Life Options program, we’ve been saying for at least a couple of years now that it makes sense to offer Internet access to patients during dialysis–or at the very least, in the waiting rooms. When clinics update their old computer equipment, we urge them to make an internet-ready computer available to patients. And when new clinics are built, we suggest that computers and data ports be included from the get-go. : )

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Does anyone have statistics on SE level and what percentage of dialysis patients would be able to qualify for a home program? Because not just any patient qualifies. Patients must have the financial resources to afford the extra fees of hh. They must have a stable home as well as a clean home environment. They need family support and /or a helper (yes, some independent souls may be able to get by without a helper, but those who do need one will be held back if they don’t have one). So, realistically speaking, what percentage of the patient population do you think actually qualify for hh and would want to partake?

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I know most clinics have a TV for each dialysis patient…even TVs’ with internet access built in exist, so while patients have dialysis they can also browse the internet during their dialysis time…

Very few of us here most likely are browsing from home or from work or even from the public library…

The question really would be whether it should be mandatory for all dialysis clinics to have high tech resources for patients? Or should it be the job of the social worker wo inform the patients of all the options they have? I know adding internet access to clinics will be costly and actually can pose some risks.

Or it could just the fortunate who are able to have net access…even the small group we are here are capable of sharing the info from net to our local clinics… :slight_smile:

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Regarding internet availability, I’d like to know for those who currently have this service, how are the computers kept sanitized between patients? And I’m not sure a dialysis facility waiting room is a good place for a computer, again, unless there is a way to keep it sanitized. I’ve been in quite a few units and waiting rooms that were not kept clean. Patients don’t wash their hands. Visitors, transportation ppl and others come in to use the restroom and don’t always display clean habits. Not a very inviting place to use a computer unless there is way to address these issues, although many ppl would not care a bit about the health issues and would jump on that computer.

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Hi y’all,

Caleb, I would imagine that those germ-killing antiseptic wipes could easily be used to wipe off keyboards. This is a legitimate concern. Just the other day I read in Men’s Health that in typical offices telephones, desktops and computer keyboards harbored the most bacteria. Still, this seems like something that could easily be dealt with if someone was paying attention…

RE: Socioeconomic status of people on dialysis–good question. There is a widespread perception in the renal community that patients are “all elderly” with “multiple comorbidities” and “low educational levels.” The truth is, according to the United States Renal Data System (USRDS):
1). 50% of incident dialysis patients over the 7-year period from 1995-2002 were actually working-age: between the ages of 18 and 64. Early retirement, you say? Okay, 39% were between ages 18 and 59. Either way, a substantial proportion of patients are NOT elderly.

2). Multiple comorbidities are often present–can’t refute that one.

3). No systematic national data are collected on educational attainment in dialysis patients. The largest data set I was able to find was from the Dialysis Morbidity and Mortality Study (DMMS) Wave 3, from 1996. Compared to the U.S. Census data for all adults, people on dialysis compared like this:
– About 15% of the general public has less than a high school education, while about 32% of the dialysis population does.
– About 33% of the general public–and about 33% of the dialysis population has a high school diploma
– About 45% of the general public has some college or beyond, while about 33% of the dialysis population does.

So, there does seem to be SOME skewing of the dialysis population toward less education, but not really that much.

To really determine SES, typically you need at least two data points: educational attainment and employment level. We don’t have educational data–and we have very little employment data, either. About 3 months after people start dialysis, the CMS 2728 form is completed. On this form, it asks employment status at intiation of treatment and at 6 months prior. Those are the only employment data we have. What they show is that a tremendous amount of job loss occurs BEFORE people start dialysis.

In the general public, about 66% of working-age people are employed (per the U.S. Census). But even 6 months before starting dialysis, only about 1/3 of dialysis patients are working (Why? We don’t know. I suspect fatigue due to untreated anemia, myself), and at the start of treatment it’s down to less than 1/4. So a “real” assessment of SES is next to impossible.

IMHO, this lack of knowledge creats a vacuum that the renal community fills with perceptions based on observations of in-center patients who are freezing cold, sleeping, having cramps, or otherwise not exactly at their best. Their ignorance about kidney disease and dialysis is mistaken for stupidity, inaibility to learn, and disinterest in learning.

What percentage of patients can “actually do” home hemo? In New Zealand right now, I believe it’s hovering around 40-50%. Are New Zealanders smarter than Americans? I don’t think so, do you?

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Well said Dori.

Do you know New Zealand’s break down between home hemo and PD?

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Marty, I know you want to reach many, but I want you to know you reached me, and we’ve never even met in person! While it’s true I’m not on home-hemo, I believe in it and it’s benefits wholeheartedly.
I’m not a lazy person, but between the in-center schedule and the work I do around the house I don’t have the energy or time to go out to work, or enjoy the physical activities that I did before dialysis. Even on non tx. days I get tiried, and never know how I’m going to feel. It was hearing your stories about the difference between how your father felt on in-center txs. vs. how he feels now that convinced me that my only for positive change was to search out a home-hemo program that would accept me. I’ve done everything I can to feel better on in-center dialysis, but it just hasn’t worked out for me. They tell me I’m doing wonderfull, they tell me I look “mavelous” but I don’t feel that way, and that is what is important to me.
You’ve been an angel to me, because if I never met you I would’ve thought that my life HAD to be this way; now I know it doesn’t! Right now knowing that some day a program will be available and that my life will change for the better ,is all I need to keep going on.
All the best people are involved with this site, names that I always look for when looking for good advice and info. and that is why I won’t hesitate to send folks to this site. Thankyou all for being here, and being supportive and informative. I just wanted you to know that you make a difference to a lot of people. Lin.

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This subject of internet access to help patients is interesting and Gus asks and interesting question should it be mandatory? I do believe if home dialysis is going to become available something is going to have to change and become mandatory. The truth is in areas such as ours where home hemo is NOT an option offered by centers patients are NOT TOLD Home Hemo is there Choice if fact that are told IT ISN’T THEIR CHOICE because they don’t offer and it and don’t know who does. In our area being rural as it is there probably would be quite a few patients that would be interested. A good percentage of patients have long commutes to get to a center for in-center treatment. It also sounds to me like Lin is in the same predicatment patients here are.