Thoughts on PD affordability and usability (reply to pdresearcher)

[PaulBC]

This is a reply to pdresearcher's intro post, but it is probably better to move any discussion away from there:

Speaking of dialysis in the developing world, I am kind of curious about the manufacturing cost of dialysate. I am sure  it is expensive due to very high standards of purity and sterilization. But are the ingredients themselves significantly more costly than those used in the same volume of, say, Gatorade? I don't see anything obvious, though admittedly I don't know all the ingredients.

The cycler (while a very wonderful, lifesaving device) also seems substantially simpler than widely available and inexpensive inkjet printers. I realize we need much greater reliability and many more regulations apply. It is also not subject to the same economies of scale.

But my impression looking at all this is that PD does not need to be an expensive treatment at all and certainly should be available to many people in the developing world.

As for usability. Meh. I can handle it, but it is clear the programming interface hasn't changed in a long time. I have no idea when this machine was designed, but it looks like late 80s tech. If you could add WiFi, the usability could be vastly improved just by making it accessible to a laptop, tablet, or smartphone (which are now ubiquitous including in the developing world). I am not sure how often such revisions are possible, and I can imagine it takes a while to get even simple changes approved.

[Rerun]

You could PM him directly.  I'm not sure how frequently he visits the site.  or... PM him a link to this post. 

 

[Charlie B53]

As with most the rest of the 'business world', Corporate Greed drives the user costs up to the limit of any available insurance.

No doubt that there is significant profit margin on PD dialysate solutions.

[Simon Dog]

The cycler (while a very wonderful, lifesaving device) also seems substantially simpler than widely available and inexpensive inkjet printers. I realize we need much greater reliability and many more regulations apply. It is also not subject to the same economies of scale.

The inkjet printer business model is to give away the printer and overcharge for the cassettes the buyer is locked into.   The ink, per oz, is almost as pricey as epo (well, not really, but you get the idea).  This is why some printers now use suicide chips to "protect the consumer from unauthorized refills of the cartridges".

If you could add WiFi, the usability could be vastly improved just by making it accessible to a laptop, tablet, or smartphone

NxStage does this with their system - in fact, an iPad monitoring my treatment in progress is sitting right next to the laptop I am using to enter this.    The NxStage is hardwired to the domestic area network (wifi adapteravailable), and the iPad connects via wifi.  The iPad doesn't control the unit.  It would be nice if it allowed alarm reset from the iPad, but my understanding is that a "view only" device does not need 2b approved as a medical device.    It's much nicer, and easier, to see the entire status on a single screen than watch a status display cycle through values, and press a button to switch the display mode of the unit.  the internet connectivity takes care of transmitting data back to the clinic (I enter BP), as well as getting data to me (I am notified of any changes to my Rx via the iPad).

No doubt that there is significant profit margin on PD dialysate solutions.

I wouldn't be surprised if the alternative (hemo) pulls the price up a bit.

Medical device costs are tremendous due to regulation.   The NxStage machine costs something like $18,000 and the supplies no doubt cost a bundle.   Even so, the company has yet to turn a profit.

Anascorp scorpion antivenin costs $100 a vial in Mexico where it is made.  The US wholesale cost is $4,000 and the hospital charge for the uninsured in the US often tops $10,000 per vial - all due to the costs of regulation as well as the monopolies the regulatory environment creates (in this case, only one allowed imported of the product)

[obsidianom]

You want to save money on medical treatment and medications?    The old line is true-------"First kill all the lawyers".   

[PaulBC]

You want to save money on medical treatment and medications?

Of course, what I want is the best care for my daughter, and financial concerns are secondary as long as I can afford it.

But I have spent enough time looking at the PD system we use to wonder what it would take to make it widely available everywhere in the world. It does not look intrinsically expensive once the surgery has been done to place a catheter. I have not taken a close look at what our insurance is being billed for it, but I imagine that if I take what I think it could cost in principle, multiply by 10, and add in a fudge factor, I will still be shocked.

[Simon Dog]

I have not taken a close look at what our insurance is being billed for it, but I imagine that if I take what I think it could cost in principle, multiply by 10, and add in a fudge factor, I will still be shocked.

Insurance is typically not billed for a cycler, but billed a "per treatment" charge for dialysis and related services, with an adder for the ordering MD's services.    There are at least three prices: Asking; Private insurance negotiated as paid in full; and Medicare.   The differences between the prices can be astounding.   My insurance has paid $3K to $5K *EACH* for out of town hemo treatments; $445 for local treatments; and it's about $245 now that I switched to Medicare.

When I was in PD, I was told the cost of the Fresenius Liberty cycler was $6000.

[marlinfshr]

Costs are ridicules. I guess they charge per treatment even though I'm the one who is doing them at home. However, my nurse was sure to point out that she needed to know what days I would be travelling outside of the country so she would be sure that I don't get billed for services that week. Really? What services do I receive while at home? I do them myself.

And then the next joke in fees is that once a month I need lab draws. OK, no problem! I get the results off the Davita site 2 days later. But, I then have to see the Dr a couple weeks later so she can tell me my lab results--which I got on line. It's a frikin joke!. Oh, but she actually "listens" to my lungs and heart for a moment. Or does she as she talks while doing it. How are you feeling? How has your week been? Bla Bla Bla. Of course with no pause for an answer! Paleeeze!

[Shaks24]

I think medicare pays about 300 for that 2 minute Neph visit.

[PaulBC]

I don't know if pdresearcher has ever checked back (it's OK if the main purpose of posting was to ask for used bags--I'd gladly help but I am on the west coast, nowhere near Chicago).

Anyway, there are clearly usability issues beyond the electronics. I am just not sure if they are as easy to fix. Ideally, we'd want to minimize the number of sterile connections you need to make. This isn't too hard, and you're going to have to be trained no matter what. Still, things can get complicated when you have to use the 5-prong manifold, and I have had to throw the setup away once or twice.

I can see the advantage of keeping the design simple. Once the caps come off, you can assume it is sterile underneath, so it makes sense to have the manual step of removing them. But something that you could just snap together without touching it at all would be simpler to use. The trick is how to keep germs on the outside surface from getting into the fluid flow. I have been puzzling over that and can't think of a way to do it, but I'm sure people with more expertise have considered it. Maybe such a system already exists. The whole thing is disposable, too, so you can't make the mechanism too complex and expensive.

[Simon Dog]

I think medicare pays about 300 for that 2 minute Neph visit.

I generally get at least 10 minutes, and he's on call for any medical issues throughout the month between visits as  part of that fee.  On top of that, he treated some things that weren't strictly dialysis related, and never discourages me from contacting him directly for assistance.

Asking price is $700, my insurance was paying $470ish, haven't found out yet what he gets now that I am on medicare.   

[Shaks24]

They bill medicare 500 and change. Medicare pays about 250 or so and then you or your secondary policy pays another 40 or 50. At least thats what I have seen on my medicare.gov account.

[Charlie B53]

You want to save money on medical treatment and medications?    The old line is true-------"First kill all the lawyers".   

And Judges, as they were also Lawyers before being appointed, or elected.

[jcanavera]

I've looked at the charges submitted to my wife's insurance provider.  We aren't moving to Medicare till October.  Bottom line the provider was paying about $2000 for each hemo treatment.  Her monthy PD bill which included the pd care, blood test, machine and fluids is being paid at $6,000 a month.  Big expense is not the fluid but the delivery systems, bags, cassettes, cycler, support, packaging, and transportation cost to our home.  My neighbor has had some interaction with Baxter regarding the manufacturing of the sets.  Baxter has a single plant in N.C. Sitting on one of the purest springs in the country.  Keeps their costs down on the water, but left them far short on the capacity issue when the demands for steril fluids exploded.

Jack

[pdresearcher]

You guys are right in that the cost of the machine is greatly affected by all the costs associated with complying with FDA and international regulations and inspections / audits, along with the relatively low production volumes, compared to something like an injket printer.  HomeChoice first launched in 1994, but it was being developed in the 80s, as you guessed.  Other than modernizing the look of it and adding Wifi as PaulBC suggested, any other improvements you'd like to see?  Thanks for the suggestions!

[PaulBC]

Other than modernizing the look of it and adding Wifi as PaulBC suggested, any other improvements you'd like to see?

It would be great to have a means of connecting up the bags that eliminated (or greatly minimized) the risk of contamination. I am not sure how that would work (but see below). I also wouldn't want to create a false sense of security, since you should practice all the sterile habits no matter what, but it always feels very precarious for that second in between pulling off the caps and connecting the tubes.

I see the big engineering problem as how to keep the fluid from touching any surfaces that were exposed to contaminants before connection. That rules out a lot of simple puncture connections. But I wonder if there could be a coupling device between two sealed ends that retracted the seals as the coupling occurred. They would have to be reliably removed from the flow of fluid, and it would have to be an inexpensive enough system to use in a disposable set. I would certainly consider it an improvement just to snap a bunch of tubes together without an worries.

I can deal with a manual process for the patient-line/catheter connection, but what about the rest? For a while, I had to use four bags with the manifold, and that was very time-consuming and stressful.

[jcanavera]

As far as the HomeChoice Pro goes, I'd like to see the use of a USB memory stick rather than the memory card being used today.  We should at least see some user friendly home software that could ease the record keeping process.  Consider the state of the patients with diabetes.  Most of us are using blood test meters with most now having the ability to connect to a PC where we can graph blood sugar history, enter comments etc.  I'd love to be able to enter in my wife's post treatment blood pressure, temperature and weight information.  I'd love to be able to enter in the size, and strengths of the various bags I use each night.  Some of this we are entering into the HomeChoice Pro today, but if I didn't keep a manual log, most of that info is on the chip which the PD facility downloads, but never seems to be looked at or shared with us.  Obviously with WiFi we could use our iPads or iPhone to get much of this info. Bottom line PC software or an app could have some intelligence that could flag trends like weight gains, or falling blood pressures.  It could also provide some warnings regarding fluid choices if blood pressure/weight is abnormal.  Even the ability to enter in our monthly inventory which could warn us of potential shortages or mixture alternatives to compensate for supplies.  (I'm always juggling since we use a combination of red, yellow and greens.  Dependent upon my wife's physical health that month, I can't depend on steady UF output on a single mixture of fluid.  Right now I'm at end month and am short green so I'm mixing red and yellow).

In the HomeChoicePro I'd love to see better integration of manual drains into some totals.  We have to manually drain after the initial drain and prior to the final fill with extraneal in order to make sure she truly is empty.  The problem I see is her Initial Drain numbers as reported by the cycler are always low which is concerning to the doctor.  We then go into multiple manual drains to empty her.  Those multiple drains can pull an additional 100-300 ml of fluid out.  The cycler however is unable to account for those additional drains into the Initial Drain numbers.  I manually account for that number and have to remind the doctor of this every time we go in for our monthly checkup.  On the other hand when she finishes her final drain, we again go into manual drains to make sure she is empty before her final fill.  We again pull another 150-500 ml of fluid out.  This additional fluid does get counted in the UF totals so at least we are good there.  So the cycler either needs a classification for a manual drains which are supplemental, or at least a question after the initial drain if the manual drain is a supplement to the initial (so that it can count in the initial drain total).

Jack

[PaulBC]

Obviously with WiFi we could use our iPads or iPhone to get much of this info. Bottom line PC software or an app could have some intelligence that could flag trends like weight gains, or falling blood pressures. 

I would state the requirement generally as having total integration of all measuring devices (connected wirelessly) and automatic logging. This should be low hanging fruit because the technology is all well-established. Currently, we need to get weight, temperature, and blood pressure from disconnected devices and record the results in a paper log. It's not too bad, but it could obviously be better. One disadvantage is that you might find yourself tied to a particular vendor to keep all the devices compatible (a disadvantage to the consumer, anyway, not to the vendor I guess).

Other things, like checking the fluid for fibrin are not as ready for automation, though even in that case, it is certainly doable. Image analysis has made great strides in the past decade. At the very least you could log a thumbnail of the drained fluid and a guess at what it represents. Maybe this brings up liability issues though.

 We haven't had to do anything manually on the cycler after hooking it up (unlike jcanavera) so that part works well for us.

Finally, I want to emphasize that all the electronics don't solve the problem I would really like to see addressed, namely making sterile connection less error-prone. It is not hard with training, but it would give me some peace of mind to know I won't infect my daughter due to clumsiness or distraction.

[Simon Dog]

NxStage is already doing wireless iPad based data collection in the hemo world.  The limitation is (a) cost - this is an extra, non-trivial charge to centers, and (b) adoption by the big chains.

I don't know where DaVita stands, but the last I checked, Fresenius has about 2,000 home hemo patients (not sure how many are NxStage vs. Baby K), and only 50 patients using the iPad as part of a trial program.   

The iPad collects all the machine data - the user has to enter weight, vitals, treatment notes, etc.   I've heard a rumor from two different sources (one inside NxStage) that blue tooth integration to the BP machine is on the horizon.

[jcanavera]

Obviously with WiFi we could use our iPads or iPhone to get much of this info. Bottom line PC software or an app could have some intelligence that could flag trends like weight gains, or falling blood pressures. 

Finally, I want to emphasize that all the electronics don't solve the problem I would really like to see addressed, namely making sterile connection less error-prone. It is not hard with training, but it would give me some peace of mind to know I won't infect my daughter due to clumsiness or distraction.

This may be the hardest nut to crack since in some cases this may mean a universal change of technology while still supporting legacy equipment.  One of the things I could do (when my wife was using smaller bags with her cycler) was grab a manual bag to supplement our supply if we ran short of the 2 liter cycler bags.  Those bags use the same connectors, although you do have to clamp off the drain bag.
I think if this technology does change, we will probably see it come with the manual bags first.  There is a lot of $$$ tied up to the manufacturing process for the cycler bags and the potential of having to maintain legacy supplies along with new technology. 

Jack