I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
May 21, 2019, 11:05:18 AM

Login with username, password and session length
Search:     Advanced search
527500 Posts in 33122 Topics by 12267 Members
Latest Member: Parassawant
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Advocacy
| | |-+  "A unified approach"
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: "A unified approach"  (Read 6736 times)
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10674


« on: January 06, 2011, 12:35:59 AM »

Dr. John Agar is an Australian nephrologist who is an advocate for optimal dialysis, specifically nocturnal dialysis.  He has posted recently on several renal blogs the following "plea for a unified approach", most notably on Home Dialysis Central's forum and also Fix Dialysis.  His own website in Australia is www.nocturnaldialysis.org, and it truly has given me the most coherent explanation of how dialysis actually works, all in layman's terms.  Even though he is an Aussie, he speaks extensively in the US about renal/dialysis issues and cares enough about all dialysis patients to spend the time and effort in outlining how he believes that optimal dialysis might be achieved in the US, but it starts with "a unified approach".



"01/04/2011
A plea for a unified approach
By John Agar, MD, A/Prof, Barwon Health, Geelong, Australia

I have decided to post this, concurrently, on several key internet sites frequented both by 'informed' dialysis patients (or dialyzors) and by dialysis-user thought leaders – some but not all of whom are also dialyzors themselves.

I am a distant but involved witness to the US-centric current struggle. It seems to be a struggle driven by many disparate yet essentially similar groups – all of whom seek one goal: to achieve recognition and acceptance of, and funding for 'better dialysis'.

Current dialysis does not provide good dialysis.

This statement broadly applies … except for what I would call the 'enlightened' programs – programs that offer and promote both intensive patient education as well as a range of flexible options including daily, nightly, short-hour and long-hour, facility-based and home-based care. These enlightened programs also must (and do) fundamentally include access to of all the options and choices of duration and frequency (as above) after open discussion with a now- educated patient. An educated patient + an educated nephrologist and delivery team + an enlightened program unfettered by funding biases or profit-seeking = better dialysis.

Better dialysis may mean many different things. These might include but are not restricted to:

•Better biochemistry
•Better wellbeing – both during and after dialysis, the abolition or lessening of treatment-associated clinical symptoms, shorter post-treatment recovery times
•Better outcomes – whatever the outcome measure may be: survival, rehabilitation, return to work, sleep and well-being, exercise tolerance or sexuality outcomes … individual goals vary but the end aspiration is always the same – a better outcome than is or can be achieved by conventional, facility-based, 3 x week, low-level-interest, one-size-fits-all, Kt/V-only-driven dialysis as it is now commonly delivered across the US
•Better equipment with simpler patient-capable interfaces and patient-enabling technologies
•Better patient (and staff) education programs
•Better access to modality flexibility and modality choice
•Better understanding from the provider (the 'givers' of dialysis) of the needs of the provided (the 'receivers' of dialysis)
… and there is so much more.

Those of us who have actively sought these and other 'betterments' have either:

1.had difficulty in providing 'proof of method' in an RCT-driven medical culture – recognising that an comparative RCT in a lifestyle health-care program like dialysis is impossible to fairly conduct – and denying the wealth of unopposed observational data gathered over decades that attest to the better outcomes of more frequent and more gentle, longer dialysis

or …


2.had difficulty in presenting a unity of message - the multi-site, low-impact divide-and-conquer 'trap' of the internet – where a multitude of small voices are crying the same message yet no one voice is focusing the direction and strength of that message.
I have seen with a mixture of (1) pleasure at the enthusiasm of so many who have set up blogs, information sites, facebook(s), twitter(s), Q&As … the list is seemingly endless … see Bill Peckham's blog list at http://www.billpeckham.com/from_the_sharp_end_of_the/2010/12/tracked-ckd-blog-list-has-been-updated.html yet also (2) horror at the division of the 'forces for better care' that this enormous list implies …

It is this division, this dilution of purpose, on which I seek debate. I have argued against the splintering of the forces for 'better dialysis' – the dissipation of one single loud shout into disorganised chatter. If possible, this chatter should be addressed, coalesced and brought together into one strong voice for change.

While it is immaterial (to a degree) who the leader of that voice may be … that it is one voice, that it has one focus – better dialysis – and that it achieves its goal with clinical precision and speed … is all that matters. Individual egos should be suppressed for the greater good.

1.Good dialysis is not machine-centric


2.Good dialysis is not site-specific … though most who read this would likely agree that dialysis sessional duration, dialysis frequency, and dialysis regularity – the rhythmic spacing of treatments to abolish 'long-breaks' of >48hrs minus treatment length – are key components, whether provided in the home or in a facility
Some will argue for home HD, some for PD … 

Others will argue on behalf of specific equipment …

Some seek better rehabilitation …

Others seek funding change …

All of these are important in their own way but none are, individually or of themselves, the key.

Each is individually blogged, Twitter'ed, Facebook'ed, and in other ways extolled.

None are cohesively combined at any one single, non-partisan site.

Some might argue that 'Home Dialysis Central' was the most effective clinical 'better dialysis' site until splinter groups eroded its collective voice - though my own interest in it remains strong and, in my view, it remains (or should remain) the core information site for home therapies as it is not (nor should it be) equipment-specific but home-relevant to any mode or machine …

Others might feel that 'Dialysis at the Sharp End of the Needle' is the most effective 'political' site for the dissemination of ideas and exchange of views … 

The recent appearance of the 'Fix Dialysis' URL as (in part) a response to the ProPulica article – though I am aware Gary Petersons thinking on a 'fix' for dialysis has had a far longer/deeper gestation than as a simple PorPublica response – shows 'collective' promise and may prove a most useful vehicle – but if so, it must be then supported by and/or referenced as the core site for a unified push …

While the proliferation of sites, on the one hand, is an indication of the depth of feeling and interest, on the other, multi-site mini-blogs have tended to dilute the message and diffuse the essential argument.

I seek discussion – at what ever site you support – of the concept of one strong, unified internet voice … at whatever current or future 'address/URL/website' is chosen … led by whichever of the lead voices has the greatest chance of achieving cohesion … but chosen they should and must be.

So, too, must a single target for that message be decided. And the target must be hit – bulls-eye – again and again until the message strikes home.

Without a central site and a lead voice, the pleas to the chosen target for change will never work and those who must be made to hear, will never listen.
 

NB: Postscript!

I have suggested that the focus for this discussion be at FixDialysis.com though I am posting it as well at HDC and DSEN

(Additional text below added Jan. 5th)

I think several things are needed for a chance at success.

1.A unified approach through a single website which garners clout and momentum – multi-site carping won’t do it.


2.Harness, not alienate, industry. Ok, I know ... there’s a whole lot of baggage about profits (anathema to me), ‘rip-offs and the like – but I think they have to be wooed and smoodged to be part of the voice, not lambasted and made into ‘the enemy’. I know there is feeling out there against ‘the companies’ ... But, at this point in time, they need to be brought alongside, not pushed further away.

As the only non-US member of the RSI-Fresenius Medical Advisory (so, yes, I have a foot in both camps!), I know that we (wearing my ‘company’ hat) are working hard and fast at a home machine. It will clearly compete with NxStage and with Baxters’ desktop Aksys-reincarnation ... that’s OK ... so they should ... but it is no longer true that they are ignoring the home as a site for dialysis. They are just still a few months shy of showing that clearly to the ‘deprived’ home markets.

3.Seek support for home-incentivization(s) ... as we have done so successfully here in OZ. It’s not so hard to do (I suspect this could even be true in the weird and unbalanced health system that is the US) ... Sane thinkers, locked in a room with policy-makers who can not only make policy but implement it, might just achieve that if the carping and bickering stops, thought-leaders align, an olive branch is extended to industry and a united front is presented.
 
4.Industry is not making the efforts to produce home equipment (and they are) for nothing! They want the home market to expand. Make no mistake about that! So, the anti-industry voices must be made to understand that ‘that was yesterday’. I understand their bitterness, their disappointment and their distrust but, for ‘today’ and ‘tomorrow’, you need the grunt of industry to turn the policy ship around.
These are my views – right or wrong ... and, I do care – I hope you can believe that – I do care. I am not an industry mole in this ... I am a realist, a believer in better dialysis, I believe better dialysis is available for all – if we but play the cards correctly.

And, at the moment, I think the game is being poorly scripted."

Thank you to all who have taken the time to read this.  We all deserve to receive the best that dialysis has to offer, but just because we deserve it doesn't mean that we don't have to fight for it.  It is important to understand that optimal dialysis is important to anyone who has CKD because you don't know when you will progress to CKD5; when you do, it would be good to know that you are given the choice of treatment and that you understand the benefits of good dialysis.  If you are wanting a transplant, chances are you will be using dialysis as a bridge, and optimal dialysis will keep you in better health so that you will be able to stay on the waiting list, so even those hoping for a transplant will benefit from having optimal dialysis available.  We all know that not all transplants last forever, so if the day comes that you do get that transplant but it doesn't last for many years and dialysis again becomes a part of your life, again it is good to know that at least the dialysis you receive will still keep you in good health.  And if you are one of the many dialyzors who either are not eligible or desirous of transplant, optimal dialysis is crucial if you want to reclaim your life.


Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
RichardMEL
Member for Life
******
Offline Offline

Gender: Male
Posts: 6153


« Reply #1 on: January 06, 2011, 01:51:51 AM »

He makes some good points. I'm so glad he's one of ours - and a fellow Victorian!!!  :ausflag;
Logged



3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Hemodoc
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2110

WWW
« Reply #2 on: January 06, 2011, 10:08:39 AM »

If we are going to rally behind one voice, I would contend that we already have that one voice that the entire world has already rallied behind, that of Dr. Belding Scribner.  All programs utilizing optimal dialysis are doing no more than following in the footsteps of Belding Scribner thoughout the entire world. The unifying principles of the Seattle experience has and still does define optimal dialysis care. Although, Dr. Scribner is obviously passed from us, he has left a legacy of writings, experience and hundreds of practicing nephrologists that carry on his legacy today.

If we are going to focus on one person and one site as the leader, then my vote is Seattle, the NKC and the current heir to the throne is Dr. Chris Blagg who already is the voice and heart and soul of the optimal dialysis movement here in America as anyone involved in it will so testify.  He is an internationally recognized champion of optimal dialysis and is published in all the leading medical journals including the NEJM. Dr. Blagg is at the forefront of decades of studies proving the benefits of optimal dialysis and he is also at the head of political action with decades of testifying before congress. Dr. Blagg also has great staying power through decades of opposition to optimal dialysis.  He is an inspiration to me every time I become discouraged on the lack of progress.  He is also the go to person when ever difficult issues on where to proceed come up for any and all of us in the American dialysis advocacy circle.

I am not sure what has prompted this call for unity and to gel behind a single "voice" but in my three years of interacting in the dialysis advocacy world, all have gravitated to one place and one person for years, Seattle and Dr. Scribner and his proteges who now carry on his life's work. The gift of life given to us by Dr. Scribner's insight and genious demands that we all work as one to complete his work. His words of encouragement ring out to us today as loudly as they have for decades.  I can think of no other man, no other place to rally and unify the message.  Indeed, we have already been doing this for decades in the dialysis advocacy circles.  Let's bring it to pass.

That is my vote and my devotion to this call for unity since all roads to optimal dialysis in America pass through Seattle.

God bless,

Peter
Logged

Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10674


« Reply #3 on: January 06, 2011, 10:22:50 AM »

So, how do ordinary patients like me contact Dr. Blagg for ideas on how to spread the mantra of optimal dialysis to our own neph or to our own Congressman?  Would he have the time to be the go to guy for all of us who want our voices heard?  Does he have any ideas on how we can rid the dialysis profession of the 3x4hr mindset?  How do we move Seattle to Chicago, Houston, Boston, Miami and all points in-between?  Tell me what MooseMom can do right here, today to get the message to those who have the power.  I'm tired of preaching to the choir.
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Hemodoc
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2110

WWW
« Reply #4 on: January 06, 2011, 11:08:08 AM »

So, how do ordinary patients like me contact Dr. Blagg for ideas on how to spread the mantra of optimal dialysis to our own neph or to our own Congressman?  Would he have the time to be the go to guy for all of us who want our voices heard?  Does he have any ideas on how we can rid the dialysis profession of the 3x4hr mindset?  How do we move Seattle to Chicago, Houston, Boston, Miami and all points in-between?  Tell me what MooseMom can do right here, today to get the message to those who have the power.  I'm tired of preaching to the choir.

Dear MooseMom, I am sure that Dr. Blagg has already heard your voice since he does read and participate on HDC, DSEN, and the other renal advocacy blogs and we all turn to him for his support and to bend his ear.  First of all, I am not subscribing to the notion that we need one person to talk for all of us or one website, why would we need you to stop talking MooseMom, you are an inspiration to me and others, keep at it.  I simply responded to the hypothetical and if I was to vote for One man, one site and one voice that is as above. Since he is already long ago involved in all of our websites, your voice and that of all the patients reaches him directly and from time to time he will comment as well. 

If you are fortunate to go to the ADC, Dr. Blagg is there among all of us and is very approachable, quite remarkable for someone as busy as he is in his "retirement."

Secondly, isn't it really a unified message that we need as our "voice" not a single person?  Once again, I am just responding in my own manner to this call to unity, but in reality, there is only one message for the last 50 years that all in optimal dialysis go to, that of Dr. Belding Scribner. It has always been the center of optimal dialysis research and advocacy.  I see no reason what so ever to change horses now in the middle of the race especially since we are truly coming to the conclusion of this whole quest from many different forces converging upon the horizon.

Indeed, we are looking at a period of time where market forces, congressional action, investigative reporting and many other factors are beginning to come together as a perfect storm of advocacy for optimal dialysis.  The delaying tactics have come to the end of the line, we have the FHN which delayed these issues literally by 10 years.  It is their study that they designed and CMS needs to act upon its positive results as they said that they would.

I have been in dialysis advocacy for three years now since Dori Schatell and Bill Peckham quite literally educated me on these issues, and the message we have today is a unified message that everyone I know still preaches.

Now if you wish to discuss what tactics that we should utilize, then that is a different question all together.  In that there is room for great discussion and bringing together new allies into the fold we have not seen before working with us directly.  As far as rehab issues go, looking into state laws, fed laws and regulations, there is already much accomplished as far as mental health support, vocational and education rehab for dialysis patients through the Medicare/Social Security framework.

First of all, all dialysis units must have a master degree level social worker who has much training that over laps psychologists clinical and theoretical studies by federal mandate. The difficulty is that they are subject to the rigors of the dialysis industry in the same manner as nurses and techs by being pushed to the limits by huge case loads and little support.  But, indeed, Social Security has a back to work program including on the job training and monies for education called Your Ticket to Work Program:

http://www.ssa.gov/work/

http://www.ssa.gov/pubs/10061.html

http://books.google.com/books?id=t-6o5cqgEXIC&pg=PA167&lpg=PA167&dq=social+worker+dialysis+unit+qualifications&source=bl&ots=UV0OGWqyF2&sig=lhQqkhXAqBbgcDX894Z4YrpIO0Q&hl=en&ei=1lQlTd34OY_CsAP65c2LAQ&sa=X&oi=book_result&ct=result&resnum=4&ved=0CC0Q6AEwAw#v=onepage&q&f=false

Furthermore, all medicare patients already have coverage for mental health under Part A, B and D.

http://www.medicare.gov/publications/pubs/pdf/10184.pdf

Are these resources already in place utilized effectively, probably not, but they do exist and the Conditions for Coverage 2008 for dialysis centers spells out in great detail what the duties and obligations of the dialysis team is.  Do we have dysfunctional dialysis units?  Absolutely, but not for the lack of effort by well meaning CMS officials and state legislators who have placed the proper regulations already.  What are we missing?  Enforcement as the ProPublica article so eloquently stated a couple of weeks ago.

https://www.cms.gov/CFCsAndCoPs/downloads/ESRDfinalrule0415.pdf

I believe it is time that we all did our home work to assess where we really stand on all of these issues, in many ways we do not need to reinvent the wheel for any of this.  Do we need to come together, study the issues, develop strategies and align our resources, absolutely, but I would hope folks would not over look what is already in place and available before we start to revamp an entire system.  Lastly, I believe we need to set reasonable and achievable goals.  To do that means we need to focus and narrow our approach in a specific strategy that follows a step wise pattern.  The focus of this always has been at the congressional and federal level since they control the money and regulations for this program.

That in a nutshell is my approach and I believe it is shared by many others in the advocacy world as well.  I would simply add that we need to add a measure of patience into this discussion.  After all, these issues are 50 years in the making and Dr. Blagg has pretty much been at the center of all these issues for that time period.

The data is all on our side, we need as part of our strategy to align with the home dialysis industry in educating CKD patients BEFORE they start dialysis to create a demand for these services that the industry will have to respond to. In order to do this, we will need primary care doctors on board since they take care of more CKD patients than nephrolgists.  Regrettably, primary care has no clue about optimal dialysis issues, it is quite simply outside of their practice since only nephrologists prescibe dialysis, but teaching primary care docs about optimal dialysis as much as they already know about transplant is a tactic and strategy that has yet to be exploited.

I am not sure why so many people see it as a dire situation, instead, I believe we are headed into a period of time where dialysis providers will actively promote home options as we see the competition between NxStage and the new machines coming on the market goes into full production.  I am sure NxStage already has another generation strategy to compete with the new machines coming out.  These new machines are smaller, and require less stored supplies than NxStage especially if you use bags like me and Bill.  I am quite grateful for the NxStage, but I am also interested to see where the new machines lead as well.  I for one would like to see higher clearances and if the Renal Solutions/FMC machine has high enough purification to be considered ultra-pure dialysis then taking a 40 pound machine or there about with 6 Liters of potable water makes dialyis a truly portable technology.

So, I see the next two or three years in very optimistic terms and the confluence of market forces, investigative reporting, congression over sight that is beginning to coalesce into action and the fact that we now have the FHN to dispute the myths of optimal dialysis, my assessment is that we are sitting very pretty compared to where we were 10 years ago.  In such, patience and wisdom should guide us at this time.

Just my own personal take on where we are at and where we will go in the next couple of years.

God bless,

Peter
Logged

Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10674


« Reply #5 on: January 06, 2011, 11:42:16 AM »

Well you know, Hemodoc, I have to say that I was having difficulty recognizing the existence of any fundamental disagreement in terms of the benefits of optimal dialysis.  Despite hearing many voices, I seemed to be hearing the same basic things, so I have not been particularly pessimistic.  The basic agreement that more dialysis is better dialysis gives us the foundation from which we can direct our focus.  As I've said before, there seems to be a rather lot of preaching to the choir, and I'd like to bring more people into the concert.

Thank you for explaining that we do not need to invent the wheel.  If I am correctly interpreting your post (I have a dreadful cold and am finding it hard to wrap my head around anything harder than a pillow), we need to patiently explain to those who control funding that said wheel needs inspection to make sure it carries patients to Optimal Dialysisville and not to the hospital.  The wheel is there; we just have to ensure that it is moving quickly to the correct destination.
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Hemodoc
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2110

WWW
« Reply #6 on: January 06, 2011, 12:21:27 PM »

Well you know, Hemodoc, I have to say that I was having difficulty recognizing the existence of any fundamental disagreement in terms of the benefits of optimal dialysis.  Despite hearing many voices, I seemed to be hearing the same basic things, so I have not been particularly pessimistic.  The basic agreement that more dialysis is better dialysis gives us the foundation from which we can direct our focus.  As I've said before, there seems to be a rather lot of preaching to the choir, and I'd like to bring more people into the concert.

Thank you for explaining that we do not need to invent the wheel.  If I am correctly interpreting your post (I have a dreadful cold and am finding it hard to wrap my head around anything harder than a pillow), we need to patiently explain to those who control funding that said wheel needs inspection to make sure it carries patients to Optimal Dialysisville and not to the hospital.  The wheel is there; we just have to ensure that it is moving quickly to the correct destination.

Dear MooseMom, that is just my own personal take on these issues.  Since starting this "hobby" three years ago kind of by accident, I asked Bill Peckham about buttonholes on DSEN by email and he just started introducing me to folks in advocacy and started asking me to write on his site, in any case, we are ahead of where we were three years ago especially with the FHN, and the home dialysis competition developing before our very eyes.  If the two machines that will soon be on the American market are as financially viable as the NxStage has already proven, then we truly have an industrial insider we can align with since the goals of home dialysis are the goals of optimal dialysis and these machines are designed most specifically for the long nocturnal indication.

I truly don't understand all of the mechanics of why congress chose a treatment for $27,000 in-center instead of home nocturnal thrice weekly dialysis for $7000 a year back in the 1970's.  I understand the historical context and the NCDS, but is congress and CMS really that stupid that they bit hook line and sinker on the dialysis industry propaganda line?  Apparantly they did, or there are other undisclosed factors that took place behind closed doors that one could only speculate about with absolutely no way to prove or disprove such speculations.  All I can say is that the same data we have today truly was available back when these decisions took place, yet we know where they went.

It is complete madness and lunacy, but that is often my impression of what happens in many areas of government, especially after working for the government for 9 years and seeing the spending spree at the end of each year to make sure we didn't lose any money for the next fiscal year.  They came up to me and said, we need you to spend $50,000 to keep our budget for next year!!!  I was like a kid in the candy store ordering a new Treadmill heart machine for testing for angina, a new EKG settup for Holter monitors and EKGs and new flexible sigmoidoscopy equipment.  That is the way the government thinks as far as budgets go and I am sure others can give their own stories on this sort of thing, but indeed the supply officer did come and make that request.

In any case, I am optimistic about where things will go with above forces coming together in a perfect storm that we have not seen since the ESRD mandate in 1972.  Perhaps I am just a dreamer or uninformed, but I do truly believe that these forces are coalescing behind the scenes.  Only time will tell.

Once again, this is just my own personal take on the whole situation and I am sure others will have there own take and viewpoints which is good, who is the one person with ALL of the answers?  Remarkably, the majority of dialysis advocates work well together, I would hope we would simply continue in that tradition as we have already done for quite some time, the bundle and QIP for instance over at WeKAN is a great example of the cooperation between all involved.  We may have many different small groups, but the fact that all of these groups work together and collaberate already is a very important and fundamental element to not throw away either, once again, just one more part of reinventing the wheel.

Rich Berkowitz has put together a very supportive family of patients at NxStageUsers and that community is growing and accomplishing different things as well.  My personal take is that the dialysis advocacy world is becoming more diverse and including more grass roots people even though they are spread across a wide array of websites and organizations.  So be it as far as I am concerned, all large advocacy groups such as the NKV and AAKP became sounding boards for the dialysis industry from insider take overs of these organizations.  That cannot possibly happen when we are splintered so to speak.  I find that as analogous to Guerrilla warfare or irregular warfare.  The large, central organizations with ONE voice are another large dissappointment when looking at the history of dialysis advocacy.  Keeping a large number of small but effective and collective voices completely mitigates any attempt to squash the message as the dialysis industry did at NKF and AAKP.

So, there a number of ways of looking at the current situation that are actually working to our advantage, not disadvantage. The large central single unified voice can be taken over from dialysis industry insiders, yet the small independent operator working together with pooled resources will not have the watered down approach we have seen from large advocacy groups in the past.

So, irregular warfare in my mind is a plus if we all stick to the central elements of optimal dialysis and as far as I have seen in three years, that is exactly how it is working right now.

Once again, just my take on all of these issues,

God bless,

Peter

P.S. Thank you for your energy and zeal MooseMom, please don't lose it.

Logged

Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
Zach
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4820


"Still crazy after all these years."

« Reply #7 on: January 06, 2011, 12:39:56 PM »

Guerrilla Dialysis!

8)
Logged

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."
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10674


« Reply #8 on: January 06, 2011, 12:55:16 PM »

Instinct tells me you are right, and that's why I want to write to my US representative not as a "professional advocate" affiliated with a large, well-oiled organization but, rather, as a regular constituent who saw dialysis offered "non-optimally" to my mom and wants better treatment for herself.  I highly doubt that my new rep knows anything at all about dialysis, so if I can educate him from the ground up, he may become an ally for all I know.  You don't know unless you try.

Sometimes it is easier to call folks to action with a battle cry founded in pessimism and urgency.  If you are told that things are actually looking up, there may be that fear that you won't get off your duff and add your voice.  Perhaps that is why there is this impression you've gotten that some feel we are doomed unless we all come together and say the same thing through only one conduit.

LOL@Zach.  We can all be insurgents.

Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Hemodoc
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2110

WWW
« Reply #9 on: January 06, 2011, 02:28:35 PM »

Instinct tells me you are right, and that's why I want to write to my US representative not as a "professional advocate" affiliated with a large, well-oiled organization but, rather, as a regular constituent who saw dialysis offered "non-optimally" to my mom and wants better treatment for herself.  I highly doubt that my new rep knows anything at all about dialysis, so if I can educate him from the ground up, he may become an ally for all I know.  You don't know unless you try.

Sometimes it is easier to call folks to action with a battle cry founded in pessimism and urgency.  If you are told that things are actually looking up, there may be that fear that you won't get off your duff and add your voice.  Perhaps that is why there is this impression you've gotten that some feel we are doomed unless we all come together and say the same thing through only one conduit.

LOL@Zach.  We can all be insurgents.

I won't mitifate for a moment the battle we still have ahead of us.  They have demonstrated remarkable intranigence at CMS and the dialysis industry for 40 years, so stalling, delaying and changing the agenda are part and parcel of dealing with them, but we do have more in our battle group now in just the last couple of years especially with the home dialysis market opened up by NxStage.

You asked earlier how to reach those outside of the choir, and I believe the approach that NxStage has taken is instructive with Harvey Wells who recieves a stipend to travel and tell folks at individual dialysis units all about the NxStage machine.  He drives his RV and demonstrates the machine at preset locations often followed by local TV news coverage.

http://www.youtube.com/watch?v=SQM463w_2qc

FMC has done the same with Shad Ireland who promotes usual in-center dialysis.  I wish he was promoting optimal dialysis, but his story is compelling.

http://www.youtube.com/watch?v=X89CMS6bRQg

I have already talked to Rich about keeping up with another NxStage cruise which they are starting to plan, as well as his success with his conference that they are also planning for 2011.  If we learn from the dialysis industry, these sort of events attract much more attention than any research paper or boring lecture.

Logged

Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10674


« Reply #10 on: January 06, 2011, 07:45:13 PM »

In the selfless quest to advance education in optimal dialysis, I would happily sacrifice my time and go on a cruise... :angel;
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.15 | SMF © 2017, Simple Machines | Mobile View Valid XHTML 1.0! Valid CSS!