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Bill Peckham
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« on: March 08, 2013, 08:40:33 AM »

The disease olympics is an interesting article in its own right but what struck me is how different CKD/dialysis patient advocacy is from, seemingly, all other diseases/treatments. If you looked through the other threads on the IHD Advocacy Board you'd see that the advocacy agenda is dominated by issues around reimbursement and coverage, which have their place, but the problem is those issues seem to have fully eclipsed advocacy efforts around funding more and better research.

Are the practical issues around reimbursement and insurance (aka Medicare) coverage where advocates should spend their time? I think the dialysis advocacy agenda needs a major shift towards research.
« Last Edit: March 08, 2013, 09:03:18 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
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KarenInWA
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« Reply #1 on: March 08, 2013, 09:48:00 AM »

Agreed! Where is the advocacy for artificial implanted kidney or building a kidney with one's own stem cells? That to me is HUGE!!!!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
smcd23
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The patient, the baby and the donor - October 2010

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« Reply #2 on: March 08, 2013, 07:45:05 PM »

 :thumbup; :thumbup; What Karen said!! I was in my first or second year of college biology class back in 2003 or 2004 and we read an article on growing organs with stem cells, and the theory and research had been positive. That's almost 10 years ago, one would think we'd know more or even have organs from our own stem cells by now. Hopefully eventually, and hopefully soon!
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
noahvale
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« Reply #3 on: March 09, 2013, 07:37:26 AM »

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« Last Edit: September 21, 2015, 06:22:45 PM by noahvale » Logged
Bill Peckham
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« Reply #4 on: March 09, 2013, 07:27:59 PM »

According to the article lobbying for increased research funding works: "Best's study tracked federal funding and patient advocacy for 53 diseases over 19 years. Though it's impossible to tease out cause and effect, on average for every $1,000 spent on lobbying, the disease received $25,000 more in research support the following year, she found."

I think the reason CKD patient advocacy is so focused on the minutia of reimbursement is that its the providers paying patient groups to fly patients in to DC to lobby. These days the patient groups cater their messages to appeal to the funders.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Zach
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"Still crazy after all these years."

« Reply #5 on: March 09, 2013, 09:38:47 PM »


I think the reason CKD patient advocacy is so focused on the minutia of reimbursement is that its the providers paying patient groups to fly patients in to DC to lobby. These days the patient groups cater their messages to appeal to the funders.


Ain't that the truth!

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Athena
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« Reply #6 on: March 09, 2015, 11:31:48 PM »

The short answer is - there is none. Or hardly any research advocacy at all. I live in a country where we allegedly have universal access to dialysis (although I've heard some disturbing mumbling to the contrary), but the amount of research advocacy is pitiful. It is a fact universally acknowledged that CKD as a disease category will have the lowest amount of medical research funding out of all the common major diseases. Whatever research does exist, most of it is for dealing with ESRD. There is very little focus on funding research to PREVENT end-stage kidney failure!

It is like the kidney world accepts dialysis or transplantation as a viable way of life. The truth couldn't be more contrary to that.

I think there is also a concerted effort by by medical dialysis providers to delay or avoid the discovery of any 'cure' or effective treatment that avoids the need for dialysis. They make too much money from renal replacement treatments for it to be compromised.
« Last Edit: March 10, 2015, 02:59:50 AM by Athena » Logged

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PaulBC
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« Reply #7 on: March 10, 2015, 12:01:28 AM »

I think there is definitely a level of complacency in the general population. If you can get people to think of kidney disease at all, they will begin by thinking that dialysis is a complete substitute for kidney function (while appreciating the expense and effect on quality of life). They will also erroneously believe that getting a transplant just fixes the problem, no awareness whatsoever of the need for antirejection medicine or the limited lifetime of the graft.

I can state this with confidence because it describes my own thoughts about kidney disease before being affected personally (through my daughter). Maybe I only speak for myself, but I suspect the above view is widespread.

There's a dispiriting (though informative) video by Benjamin Humphreys (Harvard Stem Cell Institute) in which he describes the current state of funding for kidney research. It shook me out of whatever optimism I might have that curing ESRD is a big deal that lots of important people want to do. There are a few interesting projects like the bioartificial kidney, and I don't know how close that is to reality. There are also periodic articles about growing new kidneys that sound great, but have an element of vaporware to them. It may be a long time before we're there.

Possibly, the issue isn't really kidney research but research into solid organ transplants in general. A better understanding of the immune system might lead to a breakthrough in keeping transplanted organs functioning without immunosuppression. I hope there's more funding for that (but I honestly don't know). There are some interesting clinical trials.

Research into CKD (not end stage) is a whole other matter. I can understand why that's important, though in my daughter's case that train has already left the station so am selfishly interested in ESRD breakthroughs more than anything.

I think there is also a concerted effort by by medical dialysis providers to delay or avoid the discovery of any 'cure' or effective treatment that avoids the need for dialysis. They make too much money from renal replacement treatments for it to be compromised.

Well, not to dismiss a healthy level of cynicism, I still think that anyone who could really provide a cure for kidney disease, whether a permanent artificial organ or a compatible natural one, would get enough acclaim to make up for the loss of a cash cow for corporate dialysis providers. It's true that some parties might be happy with the current system, but many are not, and (getting back to cynicism) that would have to include taxpayers footing the bill for medicare dialysis payments. A cure is just better all around.
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Athena
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« Reply #8 on: March 10, 2015, 04:14:21 AM »


Research into CKD (not end stage) is a whole other matter. I can understand why that's important, though in my daughter's case that train has already left the station so am selfishly interested in ESRD breakthroughs more than anything.


That is why there seems to be different kidney communities with divergent objectives. As an example, I was sent today notes from a workshop that was done last year, where patients as well as academic researchers & funding bodies brainstormed what the true research priorities should be for the limited resources that exist. It was an amazing mish-mash! The objective of PREVENTING dialysis/transplants is often a drowned out voice from the much louder calls for help from all those who are struggling each day to survive (understandably so, I would say). However there needs to be a much bigger aerial view here. And that is, that we must find ways to "cure" early stage kidney disease once it becomes apparent, so that dialysis can be prevented. Most people in our society do in fact have some degree of renal impairment (from young to old). And many of them will progress to ESRD. Why isn't there more research to prevent that from occurring? What a travesty this is!

Oncologists and cancer sufferers have no problem in dreaming of and funding research into a cancer cure, yet that idea seems to be hopelessly lost in the kidney world of nephrology.

In terms of what I've been able to observe in what limited research there is to ward off ESRD, I've witnessed early promising pilot research that is then quickly snapped up & swallowed by big pharma - who then seems to stall further development of the promising new drug. I am beginning to believe that there is in fact very little motivation to find a kidney cure for the vast bulk of CKD patients that exist & whose numbers are growing.

I also get the feeling that to be a 'good patient' I should accept my kidney death prognosis and simply wait in faith for them to rescue me 'when the time comes'.  :sarcasm;

PS One thing CKD patients were extremely interested in as a research priority is finding out what diet, exercise, supplements etc would best be able to stall progression.
« Last Edit: March 10, 2015, 04:31:05 AM by Athena » Logged

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PaulBC
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« Reply #9 on: March 10, 2015, 10:13:27 AM »

Oncologists and cancer sufferers have no problem in dreaming of and funding research into a cancer cure, yet that idea seems to be hopelessly lost in the kidney world of nephrology.

Even when it comes to cancer, prevention doesn't get as much attention as a cure. Obviously there are books and products aimed at quitting smoking, and some interest in diet and nutrition, but neither of these create the kind of excitement as a cure for cancer.

Cancer is also different because it sounds a little crazy (at least to me) to forestall the consequences of an active cancer, which should be treated. On the other hand, it is very reasonable to want to preserve even reduced kidney function as long as possible and avoid dialysis. This is unfortunately of greater interest to the patient than to those providing treatment, which I think is related to your point.

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I also get the feeling that to be a 'good patient' I should accept my kidney death prognosis and simply wait in faith for them to rescue me 'when the time comes'.

Even if this is the dialysis industry's definition of a good patient, it shouldn't be your doctor's. It probably varies by individual, but you can probably find someone who appreciates your taking a proactive approach.
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Athena
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« Reply #10 on: March 10, 2015, 08:44:33 PM »


Cancer is also different because it sounds a little crazy (at least to me) to forestall the consequences of an active cancer, which should be treated. On the other hand, it is very reasonable to want to preserve even reduced kidney function as long as possible and avoid dialysis. This is unfortunately of greater interest to the patient than to those providing treatment, which I think is related to your point.


Well to me and to anyone else with earlier stage CKD, it is just as crazy to forestall the consequences of reaching end stage kidney failure as it is crazy to forestall the cancer that is caught in the earlier stages! That's the whole point I'm trying to make. Many, if not most, in Nephrology think it's all about accepting the inevitable and then getting the best dialysis possible. My Neph tried to instil in me a greater optimism about the future by offering a preemptive transplant! What's wrong with everyone? Surely, the best possible treatment that we're too busy avoiding, is to retain the functioning of one's native kidneys so as to not be dependent on any medical treatment.
« Last Edit: March 11, 2015, 05:43:14 AM by Athena » Logged

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« Reply #11 on: March 10, 2015, 10:55:24 PM »

My Neph tried to instil in me a greater optimism about the future by offering a preemptive transplant!

I admit that the thought of my daughter getting a transplant gives me more anxiety than continuing on PD, which has been going very well these past months. When the time is right, we'll go through with it (barring a miracle) but it doesn't seem like something to rush into. Transplants introduce all kinds of uncertainties. While the general public might be forgiven for thinking it's a "cure", your nephrologist better not present it as one.
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Athena
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« Reply #12 on: March 11, 2015, 06:01:14 AM »

PaulBC,
First off, let me just say that I am truly sorry to hear that you have a child who is in need of dialysis. I can't begin to imagine how that must be like. It sounds like she is receiving good treatment though and that must be a huge relief to you.

I was surprised to hear your thoughts about a preemptive transplant. From what I gather from all my internet searching & speaking to doctors, a transplant is normally regarded as the best renal replacement treatment there is ... The explanation I've been given that sounds most medically feasible is that it offers much more renal replacement, even coming close to a normal functioning kidney again. Of course we have the huge concern about immunosuppression ... Which doctors seem to be very good at sidestepping and glossing over (as they do with most side effects of drugs in general). I have always had deep reservations about tx because of this. It's always interesting to hear from a parent about this subject. Wishing you and your daughter the very best.
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« Reply #13 on: March 11, 2015, 06:43:33 AM »

I was surprised to hear your thoughts about a preemptive transplant. From what I gather from all my internet searching & speaking to doctors, a transplant is normally regarded as the best renal replacement treatment there is ... The explanation I've been given that sounds most medically feasible is that it offers much more renal replacement, even coming close to a normal functioning kidney again.

I agree with all this. In the case of a child, it's especially important to have a functioning kidney while they're still growing.

What I mean is that PD is going so well that our life seems almost back to normal right now. She is going to school and participating in activities. Her energy seems almost the same as it used to be. I realize that this cannot go on forever, but the transplant is going to be the hardest thing she's gone through so far (not to mention me, if I'm the donor).

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Of course we have the huge concern about immunosuppression ... Which doctors seem to be very good at sidestepping and glossing over (as they do with most side effects of drugs in general). I have always had deep reservations about tx because of this.

Right, and there's no going back after a transplant. I was reading a book about solid organ transplants (Organ Transplants: Making the Most of Your Gift of Life ) and even that seemed to be contradictory. One chapter explained that in a room of people trying to guess which one has a transplant, people can't figure it out and inevitably guess wrong. Another chapter explained that the drugs can lead to excessive hair growth and mood swings. So, which is it? It is certainly better to have a working organ replacement, but it is not a substitute for having your own.

If I thought a transplant was really a cure, I would be eager. I do know that this is something we need to do for my daughter to really get back on track, but it is going to cause me a lot of anxiety. PD for now seems to be very manageable.
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PaulBC
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« Reply #14 on: April 22, 2015, 02:30:59 PM »

Whatever research does exist, most of it is for dealing with ESRD. There is very little focus on funding research to PREVENT end-stage kidney failure!

I have an email alert set up for kidney news (this one for keyword "esrd") and I was a little surprised to find a link to research that is about reducing the chance of progression to ESRD.

From American Journal of Managed Care:

Implementing Guideline-Recommended Therapy for Patients With CKD: Is Hope on the Horizon?

[You can search on the article title,  but the paragraph below suggests that some drug being studied could reduce progression to ESRD in some cases. Of course, there's a substantial profit motive whether is it the dialysis industry or big pharma. But maybe there is some hope after all.]

"To understand more about the financial impact of RAAS inhibitors in privately insured patients, we modeled the clinical outcomes and economic impact of RAAS inhibitor use based on a landmark clinical trial (RENAAL)9 for a specific ARB medication: losartan. Based on findings from the RENAAL trial wherein the absolute risk of CKD progression was reduced by 25% and the risk of ESRD progression was reduced by 29%, respectively, for patients receiving losartan versus placebo9 we estimated CKD progression, progression to end-stage renal disease (ESRD), mortality, and costs for up to 10 years among privately insured patients with advanced diabetic CKD. We found that among patients with advanced diabetic CKD similar to that of patients in the RENAAL trial, use of the studied RAAS inhibitor medication would save an estimated $3408 per patient in year 1 medical costs, reaching an annual savings of nearly $11,000 per patient in year 10. It would also delay progression to ESRD for 101 patients and could save 56 lives over 10 years over the modeled 1513-person cohort.17 Our investigation focused on the potential for improved outcomes in patients with advanced diabetic CKD. "
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Bill Peckham
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« Reply #15 on: April 23, 2015, 04:05:24 PM »

I think there are smart people willing to dedicate their lives to improving our lives through research (for instance at the Kidney Research Institute that I am involved with), I've met many of them, what they need is more funding. In the US kidney research is funded through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) which funds through a competitive grant process - you can check out the funding success rates here http://report.nih.gov/success_rates/Success_ByIC.cfm

In 2014 the funding success rate for NIDDK was a little over 22% ... how many great ideas went unfunded? How many brilliant scientists have left the field because they couldn't get funding?

Also consider that the nature of the NIDDK pits research into kidney disease against research into the other aspects of the NIDDK portfolio ... Kidney disease research is in direct competition with all these other areas of medical research http://www.niddk.nih.gov/about-niddk/research-areas/pages/research-areas.aspx
  • Diabetes
  • Digestive Disease and Nutrition
  • Endocrine Disease and Metabolic Disease
  • Hematologic Disease
  • Liver Disease
  • Obesity
  • Urologic Disease
What I think is missing in the US is advocacy to increase funding at the NIDDK, which will increase the number of proposals that get funded. At the same time we should all consider supporting (aka donating money to) the entities that are seeking funding for kidney research through the NIDDK so that they are able to submit competitive proposals.
« Last Edit: April 23, 2015, 04:44:40 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #16 on: April 23, 2015, 08:53:14 PM »

I hope this is not going off topic because I do think it falls along the lines of "advocacy" but, I think in addition to more funding, there needs to be more conversation and public awareness. I admit, until my husband was diagnosed with ESRD, I knew very little about dialysis and transplants. I remember growing up and hearing about cancer and how people shouldn't smoke or do drugs but....I don't recall anyone talking about kidney disease and transplants. Sure, I am in my fifties now so back when I was kid there really wasn't much being said or done. But what if there had been? I can remember growing up with a pale gray-faced kid whose belly stuck out like he had swallowed a watermelon. We were told "oh, he has kidney and liver problems". Other than that, no one explained it to us kids and we sure as heck didn't ask. He was very energetic but could never participate in sports and his growth was stunted. We just went about our lives and so did he. We were also told that he wasn't going to live long. Well, he lived to be in his late forties and you can probably imagine how most of that went. He had a hard life. My point is, we don't hear or see much in the way of kidney disease or organ transplants and altho I am not absolutely sure, I don't think much is being said or taught to children in school on these subjects, such as in health class. And I hear they've practically all but done away with physical education (PE classes). Anyways, I think there is a need for more public awareness. A lot of companies have "health days" and invite local health advocates to set up booths to discuss their plans and health products and gym memberships. They even have blood drives. But I don't recall ever seeing booths to donate money to research or a "kidney health or dialysis awareness" booth or "sign up to be a live donor" booth...or a booth that employees can post info about "family/friends who are needing a transplant" booth. There definitely needs to be more research and with it, education.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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