Barriers to Home Dialysis

[Chris Schwab]

I've been gathering a list of ways for people on dialysis to overcome the obstacles to home dialysis - besides health. I'm giving it to my state reps here in Colorado and hopefully we can come up with another bill - I was involved in a bill for tech certification here.

Anyway, here is the list we have gathered so far:

*Require DVDs on home dialysis be given to patients starting dialysis – I recall being given a packet of information when my daughter started dialysis, would have been nice to see more on home dialysis. (I’m going to be getting a DVD from Home Dialysis Central for my friends and I to look at for starters)

*Lunches and conferences for nephrologists where the idea of home dialysis could be presented

*Road shows with doctors and nurses presenting the idea of home dialysis to patients and staff – maybe even finding a consultant like Dr. Christopher Blagg from Northwest Kidney Centers to help put something together

*Tradeshows with the different manufacturers of home dialysis equipment in areas that have been identified as having a strong demand for home dialysis

*State inspections would include making sure patients have been informed of the different modalities of dialysis

*The state board of health could look into including home dialysis in the nephrologists’ training and exams

*State might consider helping out with the training expenses for home dialysis

*Establish regional centers for the training of home dialysis

*Make training more compatible with a working dialyzor's or helper's schedule

Comments and suggestions are welcome

[tinamarie]

Hi i'm not sure what you mean by barriers about home Dialysis, I'm on home Dialysis and my life it greater now then when i wasn't on it. I'm on the machine which filters my Kidneys when i am sleeping i get up in the morning and go on with my life intill 10pm when i hook back up. Is your daughter on the machine or does she still do manuals? If so i would talk to her Dr about the machine there are no exchanges during the day at all. She wakes up and goes on with her life..

TinaMarie

[getlife]

Plugger,
Are you familiar with the NxStage dialysis?  You can take it with you.  Its a hemodialysis machine.

[Dez]

Barriers to home modalities simply means obstacles to doing home treatment.  It can vary for each person.   For some, it is the fear of machinery or the responsibility.  It could be a problem with adequate storage.  The list is pretty long. Basically, it's anything that keeps people from considering home based treatment. 

My husband was on home hemo for 25 years, and, for us, it was the ONLY modality we wanted to do.  However, it is not for everyone.  But, I agree, patients need so much more education about the types of modalities available and the pros and cons of each.

[jolie3]

I read something the other day about doing your own dialysis in center.  I can't remember where I read about it tho.  Has anyone else read about this type of treatment?

[Chris Schwab]

I should clarify.  My daughter was on dialysis for six months back in 2000 and got a transplant in the same year; she has been doing fine except for a spell when her labs were creeping up.  She went from taking neoral, to prograf, and finally myfortic which seemed to do the trick. 

I guess I got interested in home dialysis after having a friend on it - a Dr. Kenneth Bays.  He was one of the founders of DialysisEthics and spent some time as a patient rep for renal network 6 - didn't have much good to say about the networks, but that is another story.  If my daughter hadn't gotten a transplant so quick I would have been pushing hard to get her on home dialysis.

I am familiar somewhat with NxStage.  Are they able to do slow nocturnal yet?  I think last I heard they couldn't but somehow I got the impression they were going to?

I also recall some units were going to do slow nocturnal in-center, but it has been awhile since I heard anything more.

[getlife]

They are in the works of doing slow nocturnal with NxStage.  There is a gentleman on this site who uses the NxStage for nocturnal and really seems to like it.  His name is Bill Peckham.  I do in-center nocturnal hemodialysis...I did do it at home for 6 months but didn't have a partner, and it became too much.  I definitely like the nocturnal program much better! I have been nocturnal since 2000.

[tinamarie]

Hi thats great news that your daughter didn't have to spend alot of type with her Dialysis and she was able to get a transplant,,, that makes me so happy our children are our future. This Sunday i will be interviewed for the home Dialysis and what it has done for me and my family to have a normal life working and living, it will be shown at the Breakfast of Hope Foundation i'm excited.... keep up your work on trying to make things different. I know when i was told i had a great Social Worker that told me everything she even made her own movie script on the different Dialysis and what the limits were on each. She was from the Northwest Kidney Foundation in Seattle Wa. Her name is Mary if you want more info please just let me know i'm sure she would like to talk to you about your DvD viedo you want to do.

TinaMarie
T

[Chris Schwab]

Yes, I know Bill - good fellow.  We've met over the years on the different sites and I still recall he was the one who educated me about how the companies were compensated for the drugs they dispensed - very well by the way.

Thank you for your offer Tina Marie!  I may take you up on it sometime, right now I was planning to take a look at a DVD that Home Dialysis Central puts out.  From the sound of it, it could be what we are looking for. 

[Bill Peckham]

Thanks Chris I'm here - I just can't think of much to add to what was listed on HDC - you're talking to Dr. Blagg so you know what I know.

Tina Marie that's great that you'll be the subject of this year's video - I can't wait to see it. I'll have three tables at the breakfast.

[getlife]

The more educated people become on the 'options' the better.  I meet people who are so limited.  Their doctors may not be able to give the options, because they do not offer it at their clinics, but I still think they all need to laid out for the patients.  They may have to pick up and go to another clinic...but at least they will know.  And to add to that not everyone is a candidate for some options.

[Bill Peckham]

Joyce Jackson President and CEO of the Northwest Kidney Centers has an interview up on Renal Business Today where she addresses Barriers to Home Dialysis directly.



What is the reason for the slower adoption of home dialysis?

There are a lot of barriers. It is a program much more than a machine. The billing side, the technical services side, etc. have a whole of expertise throughout a variety of departments. There are other barriers. A major one is physician knowledge, and if nephrologists aren’t trained as fellows to understand PD or hemo at home, they are much less likely to offer it up or consider it. Physician knowledge and comfort with home therapy is a huge issue. Data shortage is another. When people are at home, you don’t have the constant inflow of data to physicians in the program, so it’s been described as having a long leash type of model. That can make physicians very nervous not knowing what’s really happening out there. So data shortage is a key thing. Also, IV meds are not paid for by Medicare. Medicare will only pay for EPO IV. They don’t pay for iron or vitamin D at home. We’re actually trying to champion to get that changed. Even if bundling is approved and it’s three years out, why not pay for iron and vitamin D at home? Those patients are not allowed to have it, even though it’s safe. That’s a discriminatory practice. Finally, it’s just an alternate path, and if you’re in a single-focus modeled business—and that’s in-center hemodialysis—doing something different is costly. And there’s predialysis education. If people don’t hear about it ahead of time, then once they’re in-center they are settled in and it’s very hard to change. But I think the future is quite bright. As the informed consumers of the world—the baby boomers, etc.—come down with kidney failure, they are going to want to take control of their care. They’re going to want to travel, they are going to want to have dialysis when they want and where they want, and that bodes well for home therapy.

Here is the whole article http://www.renalbusiness.com/articles/moving_nonprofit_dialysis_in_right_direction.html
Here is my blog post http://www.billpeckham.com/from_the_sharp_end_of_the/2008/04/joyce-jackson-i.html

[tinamarie]

Anytime getalife. Just let me know. Bill i can't wait to meet you. I was nervous but they said i did a great job. I asked them if it was true that a camara put on 20pds. They laughed. it was my ice breaker.. See you there.

[Bill Peckham]

You can watch last years Breakfast of Hope video on my blog
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/04/northwesrt-kidn.html

Muff, Mark and Madison - be sure to pause the video at the 2:35 mark, look for me in the back, that's Senator Murray in front.

[tinamarie]

Anytime getalife. Just let me know. Bill i can't wait to meet you. I was nervous but they said i did a great job. I asked them if it was true that a camara put on 20pds. They laughed. it was my ice breaker.. See you there.