I just want it/he NEEDS it!

I’m trying to follow the co-op idea. Assuming all patients are well and have helpers etc. and are trained. The center where they trained now has all the machines set up in the building and we are there running. Who is responsible for our machine maintenance and our RO’s and water cultures?

The way I’m imagining it all of that would be the same as if each person had a machine in their home. The relationship between the patient and the center would be the same. The only difference would be that the machine would be in this “neutral” location instead of in an individual’s house. I think this also addresses some of the reasons people give for not choosing home dialysis – the lack of social interaction, space requirements and unwillingness to involve the family.

I actually think scenario one and two would be allowed under current regs. A friend of mine in CA has her home nocturnal set-up at her sister’s house. How would this be different?

OK if we are the patients from Polson our center has closed. How do we find a center that will back us on this endeavor. Or in my area. If I could get the space in the hospital and the patients; I still don’t know how I am going to get a center to back us with the machines, labs, supplies etc.
Which makes me wonder if someone in the group became a dialysis provider such as George Harper did if they could arrange for getting the machines, machine maintenance etc. ?

It’s a clever idea Bill, and would be a tremedously help to alot of patients in our area young and old. But without some way around “center backup” in our area it isn’t going any where.

Unless you have some insight; I haven’t caught yet.

Marty, what do you do for backup now? I think it would be the same. I assume you’d run as a transient. In theory if there was a regional home dialysis training center in your area then they would supply the machines. To my way of thinking it should not matter where the machine is located. Imagine if four people lived in the same apartment complex – it would be fine if each person put a machine in their spare bedroom, right? So why couldn’t they each put their machine in a common room? And if they could do that why couldn’t they put their machines on that third floor? Why would it matter to the regional home hemo training facility if the machines were separated or located together?

I’m not sure but I think Medicare would look differently on having a home hemo machine in your own or someone else’s home vs. having several hemodialysis machines (even if designated for one person) in a building that multiple people came to for their treatment. At this point, the site might be considered a clinic and the dialysis provided would be self-care instead of “home” dialysis. It is possible to have self-care units but these require special Medicare certification exactly like home dialysis programs.

Medicare does pay for dialysis in nursing homes separate from the fee it normally pays for skilled nursing facility care (not much of the care in nursing homes is paid by Medicare, BTW). Either the dialysis clinic staff and machines provide dialysis and support services under Method I or the nursing home does dialysis through a Method II supplier and patients are followed by a dialysis clinic for “support services” (RN, MSW, RD).

No matter how near or far the coop, patients would have to travel to get there. Also, if patients dialyzed at the coop, patients would lose one of the best benefits of home dialysis – doing dialysis at your convenience in the comfort of your home where you can do dialysis when you want, do what you want while you’re on dialysis, eat during dialysis if you want, visit with whoever you want, etc.

If patients were doing either self-care or “home” dialysis through the coop, you’d still need a doctor to prescribe the treatment, equipment, and supplies. Are there doctors in the area that are willing to follow home dialysis patients. I think one of the huge barriers is that many doctors think home hemo is too complicated for patients to learn. They don’t seem to understand that they’re already providing to technicians what home patients would need to know.

If patients were doing dialysis through the coop, you’d also need to have a backup clinic for support services and/or backup dialysis if a machine broke or if there was a power outage, disruption in water supply, or other emergency.

I hope that someday all home hemo will be safe enough that patients who live alone can do it without having to hire someone. In the meantime, I wish that there would be greater effort to link experienced technicians with patients needing home helpers and that Medicare would pay for home helpers, especially if it helped patients keep their jobs. It seems like the added cost for a home helper could be offset by tax revenues and savings in Social Security disability programs, but as far as I know, no one has ever looked at costs vs. federal/state revenues/savings. Sorry I’ll get off my soapbox now.

We definitely need to keep thinking outside the box.

Bill here’s the problem. Dad has a nephrologist closer to home. If our machine breaks or whatever and he needs a treatment we go to the center he is affiliated with. The nephrologist in our area has no problem with taking on the Nephrology responsibility. The center has no problem allowing dad to come in for a treatment. But what they aren’t willing to get into is providing us with the Dialysis Machine, the RO, the Maintenance and supplies. This is why I have to stay with Saratoga they have a nocturnal program so they supply us with the Dialysis Machine, RO and made arrangements for us to have our supplies delivered from Fresenius.

This is why I am really wondering what George Harper got out of being his own durable medical company. If I became one then I think I could go to direct to a company and buy the machines and have their service personnel service them. And I could order my own supplies. Now I would have everything in place and not have to drive to Saratoga. Our local nephrologist dad would have. Center backup he would have. And the machines and maintenance we would have.

Beth, I respectfully disagree with you on the co-op not being effective because patients would still have to travel. In our town their are 5 patients and sometimes more driving 45 min to an hr. to the center and in the winter it is murder. If the co-op could exist were talking a 10 minute drive for anyone of them to the hospital and that it is a big difference any time and especially in the winter. Plus their family members wouldn’t have to give up 5 hrs 3x a week taking them to the center, waiting for the treatment to be done to drive them home. I have lived the life. When you drive 45 minutes to get to a center you might as well wait there because if you drive home you just get home and it’s about time to drive back pick them up and drive home again. Not to mention if you do the double trips the cost of gas.

I can tell you I bought a TV for the car. Went shopping and did everything I could to kill that waiting time and it was still murderous. It gets to be old hat real soon.

I do agree they would be loosing one of the best benefits of being at home but at least it could be an answer for those who have a center that closes and they have to travel even further. Our centers are going to be in the same position as dialysis joes and if they close now you are talking a 2 hr drive to a city to get these patient dialysis. I can see why the man from Polson gave up. And I thank God everyday I had the means to take care of dad and myself. Can you imagine a dialysis day being 81/2 hrs 3 days a week with only 4 of that being dialysis?

Thanks Marty now I understand the situation and I think you are right about Method II. I think you are on to something. If my limited understanding of Method II is correct it could be your perfect solution.

Beth I am enjoying this discussion, I hope you are too - I have to say though - I don’t think you have made your case. Most of the issues concerning backup and Nephrologist are home hemo issues and as Marty says dialyzing in downtown Polsun would be way better than driving to Missoula. It maybe that Medicare rules would come into play if you co-located machines but should they? This would also be a powerful way for patient mentors to have a real impact. And I would pointg out that with the Aksys you do not need a helper, you only need someone in the house so really if we’re talking about co-locating Aksys PHD’s only one spouse would have to be present, plus you would keep schedule flexability.

I still think this option is allowable under current regs (at least their spirit if not their letter), would appeal to a group currently only considering incenter tratments and if we’re talking more frequent dialysis this option would improve outcomes. I think this is something that could exist in addition to traditional home dialysis and would expand the number of people who could dialyze more frequently in a non-center environment. I think this idea has legs.

eth, Isn’t that the problem were in right now. We are all wishing things could be done somehow differently. If they don’t want to raise the composite rate why would they agree to pay for home helpers. If they did pay for home helpers how are you going to get a center to start a home program.

I would love to have the perfect scenario for doing home dialysis a nephrologist, center and program close to home. But I can’t control the centers and CMS isn’t doing anything to help. The only option I have left is to do it myself. I totally understand how people would be uneasy with this; but I would rather take the risk of making arrangements for the machines then to take dad back in-center where he would get sick again and we have to put up with the driving, the waiting, etc. At least if I did screw up he would die happy, he was home and felt good until the end. Better than lingering on for years feeling like crap and depressed because you can’t live your life the way you want too.

Yes, it was very difficult for George Harper and you don’t think many would go that route. Well if we knew exactly how he did what he did and what it accomplished it wouldn’t be so hard for the next guy. Just like I know what I went through to get into nocturnal. What took a year to figure out, I could now tell someone else exactly what to do in less than an hour.

Bill, I think what George Harper accomplished would work for us. It would be nice to know the details. If you run across any literature about being a durable medical company or anything related to the subject , let me know. I think this needs further checking into and I’m willing to make the effort.

I think I was some what lucky in having Rochester call and tell me they would go along with dad doing nocturnal that’s alot closer to home. But here again the center has control and CMS won’t pay for more treatments so my option are cut back on treatments, or drive further.

I don’t know if you ready the post by Cathy S. but she also had the same problems. She could get a nephrologist to back here and training by going to St. Louis but once she got back home she couldn’t get the machines.

I don’t think Lin would have as much trouble getting a nephrologist and training and a center for backup. The hang up once again is dealing with the machines.

Your co-op idea definitely has legs, and is very much needed in areas such as ours. Our nephrologist in this area seem to fully understand the predicament patients are in but they also are controlled by the centers and if the top brass says no home hemo there is no home hemo.

I kind of am looking for away out of wishful thinking and looking for action. If I can find a way to get control over the machines. Then I think alot of things will become POSSIBLE.

I have a home nephrologist. I have a home center to go to for treatments if need be. I have the dialysis machine and RO in my home. These machines are maintained by a private company. If I could buy the machines, the company now servicing them would continue to service them. I would just be responsible for paying them. So what have I lost. I have the same nephrologist at home, the same center at home, bought the same machines, am buying the same supplies, have the same people for service. The only thing I see that I lost was the long trip.

If your nephrologist is willing to prescribe what’s necessary to do home dialysis and you have a nearby clinic willing to support you by providing RN, MSW, and dietitian services, and serve as a backup clinic if there’s any reason you couldn’t dialyze your dad at home, I don’t understand why that clinic can’t help you contract with a Method II supply company that would provide the machine and supplies and bill Medicare for them. This is the whole goal for Method II – when a clinic doesn’t want to mess with billing for machines and supplies or the cost exceeds Medicare’s composite rate (Method I).

I’d contact your ESRD Network and explain your situation. Ask what they could suggest as the stumbling block to your dad changing his method effective January 1, 2005 to Method II assumign you can find a Method II supply company willing to provide your machine and supplies. Besides the clinic being concerned about liability related to training, it’s possible that the cost of provide the machine and supplies for nocturnal or daily dialysis is more than Medicare will pay so a Method II supply company may not want to take this on. Here’s a link to the map of ESRD Networks:

If this doesn’t work, talk with your regional office of CMS to find out what it would take to become a Method II provider like George Harper (you might tell them you know of someone from GA who did this). If you could contract with the machine manufacturer to purchase or rent their machine and buy the supplies and bill Medicare (as a Method II provider) and collect back what Medicare will pay (if I’m not mistaken, the maximum allowed is $1,490.85/month and Medicare pays 80% of this). I suspect Medicare would not fully reimburse the cost so unless your dad has insurance that will pay the difference, he may end up paying more out-of-pocket. It may be worth it, however, to not have to go so far to clinic appointments and to get the treatment he wants.

Here’s a map of the CMS regional offices. When you select your state, it will link to a page with phone numbers and email addresses for key contact divisions in that regional office. I’d suggest you start with the survey and certification office. If this isn’t correct, I’m sure they can direct you to the correct division:

I don’t know if George Harper is on the Dialysis support list, but, if so, you could ask him directly how he did this. If he’s not, I believe one of the two links I provided before (articles written by George Harper) listed his email address at that time. I’ve heard through the grapevine that he’s had a transplant, but I bet he would be willing to help others self-advocate through the system.

I left my computer long enough in the middle of that last message that I was logged off without realizing it. If anyone contacts their Network or CMS office, please let us know what you find out that might help help other patients deal with this Method II issue.

The above link is to the Georgia Association of Kidney Patients web site. Perhaps George, the immediate past presidentt, could be contacted through them.

Bill, Thanks for the info. Beth the reason the dialysis center at home can’t help with Method II is because only dialysis centers that provide self-care and training services may provide home support services for approved home modalities. They don’t do self care at the home dialysis center and they don’t train patients for homehemo. So they can’t help me with Method II. CMS rules again.