Ideas for a new advocacy group to cure CKD - please help

[Athena]

A renal nurse looked at me recently & whispered: "There are some really sinister financial incentives that will keep the research you want out of reach".

Wow! She actually spilled the beans?  As I said in the original post about this article. We are the golden geese.  No incentive to fix us.

K&S, so true about the lack of incentive to fix us ... It s no different when it comes to young people and those in their prime of working life - there is the same sinister complacency and resignation. Once you're on the proverbial scrap-heap, that's the new lens through which the medical profession will always look at you. So much so, that you just want to keep changing doctors to get a new fresh perspective! But they're all the same - once the new patient "twitch" of enthusiasm is over after the first visit, you are back in the same old routine.

The renal nurse barely whispered this in obvious fear. I will be forever grateful to her for this valuable piece of insight.

Actually, the lack of financial "incentive to fix us" is quite a profound concept to think about. I now feel a bit like Newton when the apple from the tree dropped. Some new fertile ideas are about to brew.

Rather than simply berate, criticise and admonish our health authorities over their appalling lack of medical attention and action over this scourge, we should already be thinking about how to introduce new incentives to fix this! Sounds like a new way of thinking about the problem.

Any ideas about how our improved health can become a profitable proposition for anyone other than ourselves? This is a brainstorming session!

[Athena]

Understand by this that I mean I SERIOUSLY doubt if ever mankind will find a method of repairing our currently damaged kidneys.   Regeneration is a very poor choice of word.   Re-growth of NEW cells is what is being done in the labs with very limited success, so far.   It is coming along.  I just hope that it will happen soon enough that many of us may still be here to take advantage of it.   I'm not holding my breath.

Charlie, a thought just occurred to me about this. Instead of imagining a whole organ being miraculously made like new again, we should view it as being more of a partial but realistic kind of restoration. If they could introduce some new artificially produced nephrons & associated cells into the diseased kidney, that might restore enough functioning to enable someone to cease dialysis, eg having an eGFR above 15 or 20?

[kickingandscreaming]

Any ideas about how our improved health can become a profitable proposition for anyone other than ourselves? This is a brainstorming session!

That's a tough one. The system is very entrenched in its current ways.  Clearly, though, the definition of "success" needs to be changed from "Not Dead" or "Not hospitalized" to something more closely resembling quality of life. The goal should be
1) to do some basic research into how to stop CKD from ending up in dialysis. and
2)to get people off dialysis and fitted with some kind of substitute "kidney" whether it's a transplant or a yet-to-be-refined implantable bio-mechanical "kidney."  I don't know how the nephrologists would find/maintain their cash cow (dialysis) under these conditions.

I wonder if there is foot dragging going on even in reference to transplants--although they are not really threatened by them since they are so rare.

About a month or 2 ago I had an infection at my PD catheter site.  I had not been using any antimicrobial cream on it (as none was given to me to use.)  And I balked a bit about using daily antibiotics as I feared the anti-biotic resistance.  So on my own, I was using both gentamicin cread AND medicinal honey (that has a pretty good track record).  My neph hit the roof when she heard that that's was I was doing and went into a long rant about how "this is protocol" "we've been doing it this way for years," and if you don't comply and get another infection you are out of the program.  So I was being threatened to be send back to ICHemo if was wasn't a "good girl."  It struck me at the time that really all she cared about was the "black mark " on her record if I got another infection.  And what that might do to her clinic's rating.  I am complying here as she has all the power in this transaction and I don't want to risk being switched out of PD and into Hemo.

I think this kind of brainstorming is important for us as a community.  Maybe do some fundraising for people who are doing the kind of work we want.  Kickstarter. Caring.com, etc

[Athena]

WOW! I've found a group of academic activists who have taken a look at the big multinational & highly profitable dialysis industry in the recent past. They have taken some potshots at it in passing & have written a considerable amount of written evidence against it (one doctor has died who has publicised a lot of legal type of evidence). They describe themselves as whistleblowers & this is what they study and do. I wonder what sort of reception I'll get when I call them?

Of course, it all makes sense to me when I observe how pathetic the kidney advocacy and dialysis industry really are when dealing with any CKD patient - the system wants your kidneys to fail and to have you hooked up on dialysis. Once you're hooked up, it's a case of locking you up and throwing away the key!

[kickingandscreaming]

They describe themselves as whistleblowers & this is what they study and do. I wonder what sort of reception I'll get when I call them?

I wait with baited breath.

[Athena]

I had made contact and it was an extremely powerful telephone conversation. It was like meeting a long lost soul-mate relative of some kind - these guys just KNOW the story as they've been dealing with the same thing in various other medical disciplines. They understand cover-ups & the mechanics of suppressing dissent. I didn't really feel pressured to explain the situation like I do whenever I speak to doctors and nursing personnel. The whistleblowers just get it. They will launch a new fight based on evidence and facts about the situation at hand.

Bottomline is - nobody is going to fight a new movement for you. You have to fight to get these guys onto your cause. But they are already sympathetic to it. The guy I spoke to agreed with me - "that nobody would like to end up on dialysis, on that we can all agree"

I have a pile of reading that I've been given on the subject!

Help is needed. Anyone interested in getting involved in a cure kidney disease cause can contact me via personal message.

[hatedialysis2]

what is this group suggesting for pre-dialysis and dialysis folks as an alternative?  Based on my own experience and in speaking with other patients there is a lot of pressure to get onto dialysis before it is necessary.   And based on an article I recently read, DaVita is teaming with another company to open up more dialysis centers all over Long Island as if there was not enough of them.   Are they expecting an influx of patients?  so much for dialysis not being profitable.

Good luck on your endeavors!   

[kickingandscreaming]

Are they expecting an influx of patients?

Actually, I recently read the opposite (can't find reference) that the population for dialysis is stable to shrinking compared to previous years.  Of course, there is still plenty of money to be made.

[hatedialysis2]

Here is the article about Davita and Northwell Health joint venture and expansion.  I doubt they would be putting out such big plans unless they are expecting more victims.   

http://www.prnewswire.com/news-releases/davita-northwell-health-announce-joint-venture-to-deliver-full-suite-of-kidney-care-services-300271757.html

[Athena]

what is this group suggesting for pre-dialysis and dialysis folks as an alternative?  Based on my own experience and in speaking with other patients there is a lot of pressure to get onto dialysis before it is necessary.   And based on an article I recently read, DaVita is teaming with another company to open up more dialysis centers all over Long Island as if there was not enough of them.   Are they expecting an influx of patients?  so much for dialysis not being profitable.

Good luck on your endeavors!   

I am trying to advocate for a medical cure for chronic kidney disease that will prevent people from needing to get on dialysis within their lifetime. This medical scientific cure is something that is quite achievable (eg http://hsci.harvard.edu/kidney-disease-0) if there was enough research money devoted to finding a cure to halt progression of CKD. Currently kidney disease gets a piddly amount of government funding compared to more high profile diseases like cancer and HIV. Our advocacy group is to start a new urgent push towards getting more research funding to find better treatments for CKD.

Even for those who are already on dialysis, there is still hope for alternative viable medical research solutions than dialysis. Harvard for example is also working very hard to realise the potential of stem cell based regeneration strategies (NOT to be confused with current unproven untested stem cell treatments in emerging less developed countries!!!).

So, in the spirit of the IHD site, we who are in pre-dialysis CKD don't want to end up on dialysis. For those who are already on D, we want the answer to their prayers to find a way to get off D.

As for the predicted numbers of people needing dialysis in the future - this is anticipated to rise almost exponentially globally as the diabetes epidemic & other causes of CKD continues it's massive onslaught in the newly developing countries & in first world economies. Kidney disease is a rapidly rising problem that currently only has as an endpoint 2 options - dialysis or kidney transplantation. Both options comes with significant risks and health complications. The best option is to prevent people from reaching ESRD. To achieve that, we need an unprecedented level of investment into kidney medical R&D.

As kidney patients we need to start advocating for a cure for kidney disease instead of just hoping and praying that one will just miraculously materialise when we need it the most.

Please message me if you are interested in knowing more.

Athena

[Athena]

Here is the article about Davita and Northwell Health joint venture and expansion.  I doubt they would be putting out such big plans unless they are expecting more victims.   

http://www.prnewswire.com/news-releases/davita-northwell-health-announce-joint-venture-to-deliver-full-suite-of-kidney-care-services-300271757.html

You are correct hatedialysis2 - the dialysis industry knows that it is about to have a bonanza in their captive market 'consumer sales' in the future and are making major new investment decisions to be market-ready for the new victims.

The need to find a cure for CKD has become even more urgent and dire than ever before!

[hatedialysis2]

Athena, I commend you on your persistence and dedication.   I have come across a group with networks throughout the US  who is performing stem cells.  The stem cell are derived from the patient's own fat then goes thru a centrifuge like device to extract the stem cells and then given back to the patient in IV form.   The procedure to draw the fat is a liposuction technique.   They say that the stem cells are extracted without using any chemicals.  ALso because it is your own stem stell, their is no body rejection.   According to the doctor I spoke to they are in compliance with all medical regulations and because they are not administering a drug they do not fall under the regulation of the FDA.   The doctor I spoke to said they are using the procedure to treat arthritis, autoimmune, and other chronic diseases but not yet kidney disease.    You google stem cells from fat for a list of articles.   Of course the FDA is  doing its best to try to stop these clinics.  Here is an article outlining their claims   https://www.ipscell.com/2015/01/fda-to-put-mushrooming-fat-stem-cell-clinics-on-crash-diet/

If anyone tries this and has any success with treating autoimmune or other conditions, please share your experience.     


 

[kickingandscreaming]

The stem cell are derived from the patient's own fat then goes thru a centrifuge like device to extract the stem cells and then given back to the patient in IV form.   The procedure to draw the fat is a liposuction technique.

This technique is in wide use among veterinarians.  I noticed a brochure just the other day when I took my dog in for her annual.  I didn't look at it but have read about it in the past.  I think it is used mostly for mobility issues in dogs. http://www.vet-stem.com  I don't see any sign that it is used for organ regeneration.