Dialysis from the sharp end of the needle

Welcome Pro Publica and Atlantic readers

By Bill Peckham

Today a major series of articles on the provision of dialysis went online. Pro Publica has the most complete version of the initial article, In Dialysis, Life-Saving Care at Great Risk and Cost. Check out FixDialysis.com for all the links and to join what is sure to be a lively discussion.

As for me, I just got off dialysis (I dialyzed while I slept for 7 hours) and need to be at work by 8AM. This is my 9th straight shift - I had 54.5 hours last week and it's looking like I'll have over 40 hours this week (we go Monday to Sunday).

When I'm not blogging (which is most of the time recently. For past articles I'd suggest checking out the Dialysis (ESRD) Payment Bundle, tag and the Optimal Dialysis tag), I work for a company that sets up tradeshows; last month I was offered the lead graphics production spot, I accepted. It's a union job, this is my 16th year in the carpenters union as a tradeshow specialist. I've been on dialysis for 20 years.

Dialysis can provide the results that were originally intended, I'm evidence of that, but it helps to have great partners - mine are the Northwest Kidney Centers and my nephrologist Bob Winrow.

In Dialysis, Life-Saving Care at Great Risk and Cost

Dialysis Goes Solar Down Under

By Peter Laird, MD

Nearly fifty years after the advent of chronic hemodialysis, a simple experiment in Australia stands to substantially reduce the cost of hemodialysis through applied solar technology.  Dr. John Agar of Geelong Australia began the first home based nocturnal dialysis (NHHD) program in 2000 modeled after the Toronto protocol of Pierratos and Uldall.  A recent cost analysis of home self-management revealed annual expenditures were $24,000/pt/year compared to $52,000/pt/year for incenter.  

Nevertheless, one of the major barriers for patients utilizing NHHD is water usage and energy usage.  Dr. Agar implemented a water conservation program resulting in up to 80% reduction in water bills for the average home patient.  In addition, electricity usage remains high especially when applied to more frequent and longer duration dialysis sessions of NHHD. Dr. Agar proposed a pilot study funded by Fresenius Medical Care by applying proven solar technology to further reduce the financial burden of extended hemodialysis and the early results are very promising.

Current data (short term)

Despite starting during winter (July 2010) in the coldest, cloudiest, wettest 3 months for >10yrs, the following operative data has been achieved:

• Days of data collection 49 days
• Machine Hours 554 hrs
• Power used (machines + R/O’s) 714 kWh = 14.57 kWh/day
• Power made (solar panels) 544 kWh = 13.35 kWh/day
• kWh used/machine/hr 1.289 kWh

Despite a period of poorer than usual solarexposure and higher than usual service use, our array is already making 91.5% of power needed. Over summer, the system should prove a highly efficient power source.

Dr. Agar plans to assess this pilot project over a full 12 month period to take advantage of the Australian summers with the hope that this program will not only pay for itselfwith in 5-8 years, but actually generate a stable income stream during the projected 25-30 years of solar panel life. Application of this technology worldwide could potentially offer improved access of lifesaving dialysis to countries unable to afford dialysis in the past.

“The ramifications of this are huge. If our project proves successful – and so far it has – then Fresenius intend to roll-out solar power for their dialysis units around Australia and even the world, modelled on our system,” Prof Agar said. 

This is just one more example of how the best medicine is still the cheapest medicine.  Working smarter saves lives and money.

Are American Dialysis Patients the new Tuskegee Syphilis Group?

By Peter Laird, MD

In 1932, the US Public Health Service in Tuskegee, Alabama commenced the ill fated Tuskegee Syphilis Trial on the natural progression of the disease when they recruited 399 African-American sharecroppers already infected with syphilis.  None of the participants were ever told what the study was about and when penicillin became the accepted treatment in 1947, none of the participants were treated.  In addition, the government took active steps to prevent any of the participants from being treated in a study that only ended in 1972 after leaks to the press caused widespread public outrage.

Tuskegee Syphylis Study

The study, which lasted for 40 years included only sporadic clinical reexaminations when a Public Health physician came to Tuskegee and denied the individuals any form of anti-syphilitic therapy. In fact, in 1942 when it was brought to the attention of the then Assistant Surgeon General, Vonderlehr that some of the syphilitic subjects were being called for examination prior to induction into the Armed Forces and were being directed to undergo treatment systematic steps were taken to preserve the investigation. To prevent the draftees from receiving anti-syphilitic treatment, the investigators provided the Macon County Selective Service Board with a list of 256 names of men under the age of 45 years who were to be excluded from the list of draftees needing treatment. The Board agreed to exclude these men. Furthermore, when the modern-era of anti-syphilitc therapy began in 1943 with the introduction of penicillin as an effective drug, the Public Health Service did not use the drug on the Tuskegee participants unless they asked for it.

Today, once again in America, under a government controlled program, dialysis patients are the subject of intense study, but at present, only approximately one percent of us have access to optimal hemodialysis delivered in the comfort of our own homes.  A recent article quantitating mid arm muscle mass and survival concluded with the following statement:

Mid-Arm Muscle Circumference and Quality of Life and Survival in Maintenance Hemodialysis Patients

Conclusions: Higher MAMC is a a surrogate of larger LBM and an independent predictor of better mental health and greater survival in MHD patients. Sarcopenia-correcting interventions to improve clinical outcomes in this patient population warrant controlled trials.

American dialysis patients have a worse projected survival at time of diagnosis and intervention than the average breast cancer or prostate cancer patient.  Although the need for confirming treatment options is real, we already know much on how to impact survival in a cost effective package that somehow never translates into actual patient care.  I could easily list dozens of well done observational dialysis studies that have a similar conclusion for more study, yet the mortality rate in American dialysis patients remains unchanged for decades.  It is time to implement and not simply study effective measures now as many patients do not have the time to wait for a randomized and controlled trial to confirm what we already know.  

The deaths of those poor sharecroppers allowed to die for the sake of knowledge in the Tuskegee study haunts us today as we watch another government controlled patient population languish while we do nothing to change their fate.  There is not a single nephrologist today in America who could not immediately impact all of his patients by the simple stroke of his prescription pen.  Yet, instead, the American nephrology community continues to wait for the randomized and controlled studies that will likely never come. I would hope that the American academic nephrology community would not only call for more studies, but better yet, call their nephrology colleagues to action. Lives are lost daily because we have yet to act upon that which we already know.

Glenn Chertow, MD to give ADC 2011 Keynote Address

By Peter Laird, MD

The Annual Dialysis Conference is the best place to watch and learn about optimal dialysis trends not only in America but from around the globe. The tone of the conference is often highlighted in the key note address by one of many leading researchers and dialysis advocates. Past key note addresses in prior conferences still resonate in the lecture halls as data and information is not only presented but at times debated with great passion. Carl Kjellstrand spoke with great conviction two years ago in his keynote address against randomized controlled dialysis trials (RCT) and how they were not needed nor ethical in dialysis patients with over 40 years of solid evidence from observational studies showing great benefit of longer and more frequent dialysis schedules.

The legacy of Dr. Belding Scribner's dedication to bringing about optimal dialysis in America is often the subtext of the keynote address. Perhaps no where else is optimal dialysis championed as eloquently than at the Annual Dialysis Conference put on by the University of Missouri for over 30 years. I recently reviewed the upcoming program for the ADC meeting in February 2011 in Phoenix and found that the keynote address will come from Dr. Glenn Chertow. Dr. Chertow is a renowned nephrologist now at Stanford University and researcher involved in many of the dominant studies of the last two decades.

The HEMO study is a randomized, controlled trial that showed no benefit to high flux, high intensity hemodialysis maximizing Kt/V in conventional hemodialysis regimens. The result of this study and it's negative outcome led to questioning of the entire optimal dialysis strategy that was just gaining ground at that time with the the results of the Toronto group's nocturnal dialysis program. Dr. Chertow vocally championed the cause of further randomized and controlled trials to prove all aspects of optimal dialysis before adopting more frequent and longer duration sessions in America. In fact, DSEN has written several posts (here, here and here) in opposition to his dependence on randomized and controlled trials before going forward with the same type of programs that are already used with great success in Japan, Europe, Australia and New Zealand.

Dr. Chertow's upcoming keynote address is based on another study published in Kidney International earlier this year titled: Shorter dialysis times are associated with higher mortality among incident hemodialysis patients. The interesting aspect of this study is not only the astounding conclusion that shortened dialysis times less than 4 hours/session resulted in over 42% increased mortality, but that the conclusions were obtained not from a RCT, but from an observational trial. The simple fact that the Keynote address is by Dr. Chertow using an observational trial and not waiting for confirmation from a RCT is in my opinion big news for the dialysis industry.

Are the winds of time changing in the American dialysis community? Is this also prognostication of the results of the soon to be released Frequent Hemodialysis Network studies on short daily hemodialysis as well as daily nocturnal dialysis in which Dr. Chertow is a principle investigator? Perhaps my optimism for implementing optimal dialysis is overwhelming me with hope, or perhaps we are about to experience the paradigm shift that Mel Hodge wrote about so eloquently earlier this year. The path to a paradigm shift in hemodialysis:

About 1 out of 4 American conventional dialysis patients die in the first year and 3 out of 5 die within 5 years with no favorable trend in sight. Largely ignored in practice is the evidence accumulated over decades that longer, more frequent dialysis can immediately slash this grim result in half or more. Pierratos has called for a paradigm shift—a disruptive change—in dialysis practice from conventional treatment to daily nocturnal dialysis, performed at home, to realize this dramatic improvement. We examine here how such a paradigm shift might be brought about and suggest that changes in 3 perspectives must occur. First, new dialysis guidelines must be recast from the old goal of minimally adequate to a new goal of best possible. Second, the body of dialysis research must be interpreted through the lens of best possible patient survival and well being, and the near-impossibility of demonstrating dialysis survival advantage through randomized clinical trials must be acknowledged. Finally, dialysis modality must be seen as, most importantly, a survival and well-being choice, not merely a “Lifestyle” choice; hence, it must be the nondelegatable responsibility of the physician, not dialysis center personnel, to advise and prescribe. Many old perspectives, which might stand in the way of this sorely needed paradigm shift are also examined. These old perspectives make up a fabric of excuses that has delayed—and, if not discarded, will continue to delay—progress toward a survival and well-being outlook for dialysis patients just as favorable as might be achieved through kidney transplant.

Whatever the outcome of Dr. Chertow's keynote address, I believe that a true paradigm shift is in the making. The standard of dialysis care can no longer be that of minimum standards but instead that of maximizing patient survival and rehabilitation which are precisely the goals of therapy long advocated by Dr. Scribner. It is time to come full circle and realize that the pioneers of dialysis did it right by focusing on patient rehabilitation as the objective measure of dialysis adequacy instead of reliance on the laboratory based Kt/V. Dr. Chertow's keynote address on length of dialysis sessions is a welcome addition to the Annual Dialysis Conference not only for the data and evidence that he shall present, but more importantly because of the underlying message that he will send loud and clear in presenting evidence from an observational study as the basis of the 2011 ADC keynote address.

Notes From Transplantation in the USA: Part Two Using Incentives in Organ Donation

By Anna Bennett

This is Part Two (part one) of a three post series on Transplantation in the USA a program given in NYC on April 19th 2010 by the Kidney and Urology Foundation of America.

Paying for organs has been discussed before on DSEN. I have firmly taken a stance that opposes creating an organ market here in the United States. That being said, the discussion is on the table and both sides have the mic.

The second speaker of the evening was Alex Tabarrock, Ph.D.: Bartley J. Madden Chair in Economics at the Mercatus Center and Associate Professor of Economics , George Mason University, Fairfax VA; Director of Research, The Independent Institute, Oakland, CA.

Dr. Tabarrock presented his studies showing that economic incentive is the way to cure the organ shortage. He even quoted Adam Smith (pretty safe bet for an economist). It was when Dr. Tabarrock started extolling the virtues of the Iranian system that he raised my ire. Seriously? He was using Iran as an example of a robust and functional organ market? He did. Really.

My favorite moment though was when he said that other medical/organ donations were already being compensated. His example: When you donate your body to science, they give you a free cremation after they are done. I almost laughed out loud on that one. What are these centers going to do? Ship the body parts back home? Of course the donated body would be cremated (hint Dr. Tabarrock, unclaimed bodies in NYC are cremated for free as well).

Obviously, I do not agree with Dr. Tabarock or the whole school of thought "Why can't I buy a kidney if I can afford it? It's the American way." There have been posts here on DSEN and all over the internet about the subject, it is polarizing and controversial. I cannot write unbiasedly about it. There seems to be two schools of thought, one of individual rights (Dr. Tabarrock's camp) and Society (my position). Dr. Tabarrock cited Israel and their compensation for deceased donors. I would agree that is a program worth watching closely. Deceased donors cannot be coerced or manipulated, they are not desperate.  He also cited the State of Pennsylvania creating a trust to compensate deceased donor families. He stated that the fund was established, but never used for fear of public backlash.

This is such a polarizing subject, and debate can easily devolve, and has.  My suggestion is that we watch and wait, and while we are doing that, let's fix the holes in the current system.  Because, before we create a whole new administrative and ethical nightmare with any form of compensation for donors (other than medical expenses) we have a lot of work to do. There is so much room for improvement in our system right now.  It is my opinion that Dr. Tabarrock's time, education and energy could be of use to the CKD community in a much more advantageous and practical way, rather than pick a morally gray area and try to grandstand upon it.

Notes From Transplantation in the USA: Part One Successes and Challenges

By Anna Bennett

The Kidney and Urology Foundation of America hosted a program last Monday: Transplantation in the USA: The Shortage of Available Organs and Public Health Policy:

There are over 100,000 people on the national transplant wait list, and most wait for kidneys. The organ shortage crisis and recent events surrounding the underground market for organs begs us to explore current practices in organ allocation, incentives for organ donation, and how health care policies evolve.

See NephrOnline coverage here.

It was my intention to attend this program and write a simple recap for DSEN. As I sat in the audience at the Paley Center for Media, all hope for an unbiased recap was lost. Instead, what I found was a diverse group of presenters who challenged my thoughts and opinions, and in two cases, reassured me that there are amazing professionals working in the field today. I am writing these as a series of posts.  This is the first: Successes and Challenges in Transplantation 2010.

After a warm welcome by Jonathan A. Winston, M.D., Program Chair and Moderator. There were greetings and mutual respect for an audience full of transplant professionals, transplant families and State Health Workers.

The first speaker was David J. Cohen, M.D. Professor of Clinical Medicine; Medical Director, Renal Transplantation, Columbia University Medical Center, New York, NY; Member, Board of Directors and Chair, Public Policy Committee, American Society of Transplantation.

Dr. Cohen's presentation Kidney Transplantation in the US 2010: Successes and Challenges, was direct, full of current statistics, and had plenty of suggestions to improve the current system. Dr. Cohen talked about problems in the system that laypeople usually never hear about. The disparity in practice between transplant centers. There is no uniform protocol, there is government mandated uniform reporting, but centers can pick and choose how aggressive they are when it comes to procedures. Do they push for extended criteria kidneys? Do they push for paired donation? Or do they strictly stick to the UNOS and living related donors? Dr Cohen really highlighted the under-tapped resource of paired donations, and he stressed that this is solely in the purview of the individual center. There is no national or regional system. In his center, they do the matching by hand and they assess the cases on an individual basis. My question, wouldn't a regional registry help? But Dr. Cohen notes that then, you would be asking people to wait.

Dr. Cohen also spoke about the reality of transplant being rationed medical care. The fact that only 20% of people in CKD5 are listed for a transplant. He posited that there were possibly 100,000 dialyzors (which would be about 25%) who could be listed, but for some reason are not. Dr. Cohen also stated that 30% of those on the UNOS list have significant levels of antibodies, extending their anticipated wait time. (My take: and thus, skewing the wait time average)

Dr. Cohen also used another phrase that I would like to point out: A transplant center's "Discard Rate": organs that go unused, for whatever reason. After listening to Dr. Cohen, seeing his slides and numbers, it's clear that there are gaping holes in the current system. These can be fixed, numbers can be brought up dramatically by simply fixing what already exists. With better organization, better communication and more informed patients.

He concluded on a hopeful note - by discussing some of the cutting edge protocols that are on the horizon for lowering PRA.

2010 is indeed a time of great success for renal transplant, and it is also a time of great challenge, because as long as inroads are made, the demand will rise for those who are eligible and desiring a kidney transplant.

CKD Advocacy Community Needs to Take Their Binders

By Bill Peckham

The CKD advocacy community is calcified, they could really use some binders.

I spent some time this afternoon looking through the advocacy, professional and provider sites on DSEN's big link list. With two exceptions there is no mention of HR 3590 the Patient Protection and Affordable Care Act, the health insurance reform legislation signed into law last Sunday. When MIPPA passed there were numerous communications from all corners of the CKD advocacy world explaining the details of the legislation and its expected impact.

To date I have not seen a single communication from any advocacy group on the impact of the health insurance bill. Only the Lupus Foundation of America highlights some of the bill's provisions directly, while the American Society of Transplantation links to a pdf of the Bryan Cave Health Reform Update (March 24, 2010)(PDF link). That's it. No one else even mention the historic passage of reform that will unalterably change the CKD advocacy landscape. I didn't even see links to news articles let alone CKD specific analysis (I apologize in advance if I missed one - I looked).

How can it be, with all the highly paid analysts at the various DC lobbying firms, that no one seems to have looked at this bill through the CKD public policy lens? I believe that this bill makes obsolete many of the positions held by the dialysis and transplant community, does it? Does making insurance widely available obviate the need to extend Medicare immunosuppressant drug coverage? I think it does. Why hasn't any of the many organizations advocating for expanded access to immunosuppressants come forward with definitive analysis one way or the other?

I think that the legislation, by adding some 20,000,000 previously uninsured adults to the insurance roles, means that thousands of people who previously would have started dialysis without any health insurance will now start dialysis with private insurance primary. If those 20 million adults are average how many would be expected to start dialysis in a given year? According to the USRDS ADR the number of people who start dialysis each year is about 350 per million - so in that group of 20,000,000 you could expect 7,000 to start dialysis.

What would have happened before this health insurance reform? Here's renal social worker extraordinaire Beth Witten on what happens today:

I get calls and emails all the time from pateints, family members, social workers, Networks, etc. trying to find ways to help uninsured or underinsured people who are US citizens or permanent legal residents pay for dialysis when dialysis clinics refuse to accept them unless they have coverage for dialysis. I've heard my social worker colleagues lament the time they have to spend on teleconferences explaining situations that can't be fixed in the current health insurance system which denies coverage or charges premiums that are too high for people to pay. I've heard of providers donating money to AKF to get their patients premiums paid for EGHP (including COBRA) premiums so those providers can recoup many times what they've donated for as long as possible.

Does the new legislation address this issue as I think it does?

Where is the analysis from the KCP? From the KCC? I hear that maybe those with insurance through the exchanges would not be subject to MSP. One, if that is true it would be a good thing to advocate about but two, how could that be true? Many of the people in the new exchange could be expected to have not paid into Medicare - a self employed landscaper, for instance. Without any work quarters to qualify under the ESRD program it makes no sense to think that the exchange insurance would drop him due to illness. That would be a news worthy exception to how the bill has been described. 

Right now the number one advocacy issue in the dialysis world is KCP's call to push Congress to push CMS to pay more for oral meds if they're going to be included in the expanded bundle. DPC, AKF and ANNA have versions of the Capwiz letter on their sites. DPC, NKF, RSN and AKF sent a letter cosigned by the four groups last week. None of the organizations acknowledge the language signed into law that directs the GAO to conduct a study. None of the organizations acknowledge the changes to Medicare Part D that will likely increase appropriate use of the oral drugs in question.

Together, these elements of the bill the President signed into law will make it much less risky for CMS to add oral meds at a later date. It'll be less risky because CMS will be better able to judge the appropriate level of use and the cost of that level of use, if all Part B beneficiaries had access via dialysis. If it is less risky in the future, than it is riskier to proceed now. That is a very powerful message. Why isn't that the suggested message?

Why are the CKD advocates proceeding with the messages they developed pre passage of HR 3590 the Patient Protection and Affordable Care Act? Why is there no analysis of the impact on CKD policy issues available from any of the CKD organizations interested in public policy?

It is ironic that as CMS works to address the calcium balance among people who use dialysis, that it is the organizations that advocate on our behalf that could really use the oral drugs without injectable equivalents.

The Annual Dialysis Conference opens Sunday; the bloggin' starts today

 By Bill Peckham

I spent some time down at the Washington State Convention and Trade Center today making sure the Northwest Kidney Centers booth and display were squared away. Here is a before shot of the exhibit hall. The floor has been laid out, the booth spaces outlined with tape. Tonight crews will be in staging the large booths, tomorrow and Saturday the Annual Dialysis Conference exhibitors will be coming in to set up their booths.

The NKC banner is already flying, welcoming attendees to our neighborhood.

For dialyzors in the South emergency room is dialysis unit of last resort; Dialysis aid headed to Haiti

By Bill Peckham

RenalWEB links to what promises to be a more hopeful story on the dialysis situation at Atlanta's Grady Hospital. On reading the article, however, it is clear that there is still a way to go for a solution. I first heard about the situation at Grady in September. Back then they had 60 patients who were insurance never, Medicare/Medicaid never. It comes down to a state decision as to whether routine dialysis is a covered service under Medicaid or whether it is uncovered.

The Atlanta Progressive has done the most complete reporting on the situation (my emphasis):

As previously reported by APN, Grady sent letters to uninsured patients informing them of the closure and provided them a list of nearby private dialysis providers along with three options for future care: return to their country of origin, move to another state where they may qualify for emergency Medicaid services, or seek treatment through an emergency room.

As is often said if you show up at an emergency room with a medical emergency, you will get medically stabilized regardless of your insurance situation; the hospital will probably get some payment through Medicaid or a state level Medicaid-like-program of federal healthcare cost sharing.

Given that universal emergency room entitlement, most states allow Medicaid to pay for routine dialysis. Correctly, seeing dialysis, even routine outpatient dialysis, as sequential emergencies. Point of fact, as soon as you finish your dialysis treatment you will die unless you get dialysis again soon, so when you need dialysis it is an emergency or a day or three away from being an emergency. The problem of course is political. It is politically very unpopular to pick up the healthcare tab for illegal immigrants who are the majority of people who do not routinely qualify for Medicaid. And second point of fact, dialysis is not any where close to being universally available in our hemisphere, let alone in this world.

The reason that there are dialyzors from all over the world, in the United States without citizenship and/or insurance, is because dialysis is not widely available in their home country (e.g. central America, sub Saharan Africa) or in the US, dialysis is better (e.g. Mexico, Philippines). As individuals we understand the impulse, but as a society we are worried for obvious reasons. We can not, as a country, be the world's dialysis provider.

There is the issue of moral hazard. If we provide dialysis, people will come here to receive it. Far less than half the population of the world has any access to dialysis or transplantation. As a country we have to be clear eyed and direct aid where it will do the most long lasting good for the most people. There are huge areas of the globe where people need drinking water; on our national aid priority list, dialysis can't come before drinking water.

Right now in Haiti, struggling to get its footing after the devastating earthquake, the question of dialysis is in the news. Our impulse is to help, so we applaud the efforts of the dialysis community to fund emergency services. Yet before the quake, I believe there was a single dialysis unit in Port-au-Prince serving the entire country of 9 million Haitians. With a population of 9 million, by US standards there should have been 10,000 Haitian dialyzors (if not more, given risk factors for CKD). Is the US dialysis community going to stay in Haiti, after the next disaster moves Haiti out of our collective consciousness?

Certainly I hope the equipment on the USNS Comfort is put to good use. There will undoubtedly be people with an acute need for dialysis that will benefit greatly. They will have a chance to live and rebuild. And certainly the previous dialysis infrastructure should be rebuilt and enhanced, to the degree the community can sustain. But the need is greater than we, the United States, can sustain. That feels nearly as hard to accept as the text messages from under the rubble, sending out unanswered calls for help. It is hard to accept.

We want to help. We know dialysis. But right now, right there, dialysis isn't the right answer. Not when we can't help all the dialyzors of Georgia, and Florida, and ...

Practices alleged in lawsuit against DaVita are damaging to entire CKD community

By Bill Peckham

RenalWEB has late breaking news that the United States of America is joining a whistle blower suit is proceeding with DaVita as the only defendant. RenalWEB has the 52 page amended complaint (PDF link) and points to pages 15 to 26 (RenalWEB's editor notes feeling " ill when reading" those pages). I haven't read all the gory details but point 40 of the complaint  seems to succinctly sum up what is alleged:

40. Through training, review of patient records, and the drafting of treatment protocols, Amgen taught DaVita’s facilities about the “increased revenues” and “financial impact” arising from the increased utilization of Epogen.

These are credible charges that are inline with reports, and observed results.

This hurts us all. What is described is experimentation without consent. For example, experiments to determine how changing protocol q, increases EPO use without too great changes to measured reported hct.. Un-consented experiments, designed to discover optimal revenue. This is damaging to people doing real renal research. DaVita's optimal revenue research, is damaging to those doing optimal dialysis research. It is nauseating.

These allegations erode the trust that has to be present to achieve optimal dialysis not just at DaVita, but throughout the provider community. This is a set back for us all.

UPDATE: In False Claims Act cases, an individual can file a suit on behalf of the U.S. and the U.S. is included as a listed plaintiff. I misrepresented the US government's participation in the initial version of this post.

U.S. Equal Employment Opportunity Commission (EEOC) proposes changes to the definition of the term "disability"

By Miriam Lippel Blum

New rule-making is in the air this week and it's not just CMS that is updating things.

A press release on Sept. 16, 2009 announced approval by the U.S. Equal Employment Opportunity Commission (EEOC) of a Notice of Proposed Rulemaking (NPRM) revising its regulations to provide that an individual seeking protection under the Americans with Disabilities Act (ADA) establish that he or she has a disability consistent with the original, expansive intent of Congress when it enacted the ADA in 1990.

Congress believed that several Supreme Court rulings had construed the definition of "disability" too narrowly, thereby preventing individuals with impairments such as cancer, diabetes, epilepsy, multiple sclerosis, muscular dystrophy, post-traumatic stress disorder, and bipolar disorder from bringing discrimination claims.

The ADA Amendments Act (ADAAA) passed in 2008 and the newly proposed rule make it easier for an individual alleging employment discrimination based on disability to establish that he or she meets the ADA's definition of "disability.

The NPRM emphasizes that the definition of disability -- an impairment that poses a substantial limitation in a major life activity -- must be construed in favor of broad coverage of individuals to the maximum extent permitted by the terms of the ADA, and should not require extensive analysis; that major life activities include "major bodily functions"; that mitigating measures, such as medications and devices that people use to reduce or eliminate the effects of an impairment, are not to be considered when determining whether someone has a disability; and that impairments that are episodic or in remission, such as epilepsy, cancer, and many kinds of psychiatric impairments, are disabilities if they would "substantially limit" major life activities when active.

The regulation also provides a more straightforward way of demonstrating a substantial limitation in the major life activity of working, and implements the ADAAA's new standard for determining whether someone is "regarded as" having a disability.

The 60-day public comment period on the proposed rule-making will officially commence upon publication of the NPRM in the Federal Register, which is expected to be published the week of September 21, 2009.

The NPRM will be available from the Commission's website, www.eeoc.gov, along with a question-and-answer guide about the proposal and instructions for submitting public comments.

NY Times highlights need for lifetime immunosuppression coverage; overstates cost of dialysis

By Bill Peckham

The New York Times has a good article up U.S. Cost-Saving Policy Forces New Kidney Transplant that shines welcome light on Medicare's myopic 36 month coverage period for transplant drugs. But where does this come from?:

By late 2003, her transplanted kidney had failed, and she returned to dialysis, covered by the government at $9,300 a month, more than three times the cost of the pills.

$9,300/month? The article isn't even internally consistent because farther down it gives Medicare's total average cost per beneficiary on dialysis as $71,000/year or about $5,900/month.

Even the $71,000 number is misleading since that average cost includes those on dialysis and in a skilled nursing facility. For the purpose of comparing renal replacement costs, transplant vs. dialysis, the NY Times should have used the average cost per beneficiary on dialysis not in a skilled nursing facility which is about $65,000/year or $5,400/month.

As I've written I think Medicare's cost/benefit analysis underestimates some of the savings that could come from extending lifetime immunosuppression coverage under the ESRD program. The numbers are compelling without exaggerating the cost of maintenance dialysis.

National Review Online misunderstands USA Today article

By Bill Peckham

John Graham has a post up on the National Review Online healthcare blog, Critical Condition. Kidney Dialysis: The Price of Government Monopoly works hard to draw incorrect conclusions about the provision of dialysis in the United States.

Graham takes issue with Rita Rubin's USA Today article contention that in 1972, before the launch of dialysis coverage under Medicare "Only the wealthy could afford long-term treatment." (I'd say that's true. Aside from those with strong community support, only the wealthy (or well insured) could afford the long term costs.) Graham finds fault writing:

The truth is different, according to a fascinating chapter by Richard A. Rettig in the book Biomedical Politics (pp. 176-214). Dr. Rettig reports that effective dialysis was an emerging technology in the 1960s.  The innovators founded the American Society of Nephrology in 1966 (p. 181).  "Nephrologists trooped to Seattle in the early 1960s to learn how to perform dialysis, and programs sprang up across the country, each growing over time as means were found to finance treatment." In the late 1960s, "there were fewer than 1,000 patients being dialyzed in the entire country, but that number had been increased to approximately 10,000 by the time the 1972 legislation was adopted" (p. 182)"

USA Today reports that there are 350,000 patients undergoing dialysis today. The overall population has increased by 45% (from 210 million to 305 million), so we can reasonably assert that the eligible population for dialysis in 1972 was about 240,000 patients. At the rate of growth prevalent until 1972, it would have taken seven more years, until 1979, for the private sector to cover everyone. But it's reasonable to assert with confidence that the pace would likely have accelerated as the technology was broadly accepted as effective.

I can't say I understand the point he was trying to make, it was largely the nonprofit sector (not the "private sector") that had steeped up to cover those 10,000 people in 1972, but I can say his idea of a reasonable assertion is spectacularly wrong.

A quick check of the USRDS Annual Data Report for 1994 presents some actual numbers. There weren't even 240,000 people on dialysis in 1991, it was 1981 before the 75,000 mark was broken. It's a reasonable assertion that Graham knows nothing about the provision of dialysis generally or in the US specifically but that isn't going to stop him from continuing to dig:

So, things were actually progressing pretty well until the government crowded out private coverage.  I suppose dialysis patients were just unlucky, that significant medical breakthroughs were happening just as the government succeeded in its first phase of taking over Americans' access to medical services.

If President Obama achieves his goal of completing the government's take-over of Americans' access to medical services, expect every medical treatment available in 2049 to be (at best) unchanged from those available in 2009.

Graham wants to use the ESRD program to reinforce his preferred healthcare policies but as with his previous numbers assertions this too has obvious problems.

The reason we in the US know we are under preforming in the provision of dialysis is that our industrial world peers are getting much better results. Our peers and allies, who mandate healthcare access for all citizens, achieve better clinical outcomes while spending less money. Graham's explanation for our under achieving dialysis outcomes, that government crowded out private coverage, isn't correct. What is missing from Graham's history is the other shift that happened with the advent of the dialysis entitlement under Medicare. The shift from community based nonprofit dialysis, to corporate, for profit dialysis.

When those "Nephrologists trooped to Seattle in the early 1960s" what they saw at the Northwest Kidney Centers (then the Seattle Artificial Kidney Center) was dialysis based on volume control and how the patient felt; provided through a nonprofit community based outpatient dialysis unit. That was Scribner's vision, a vision for optimal dialysis.

What took over in the US after Medicare came in was for profit dialysis. Dialysis as it was imagined at the Brigham and based on the clearance of urea - a harmless, tiny and therefore easy to remove molecule. First with National Medical (now Fresenius), for profit dialysis centers today provide over 80% of US dialysis treatments. The cost of profit and an acceptance of adequate is a better explanation for the US's dialysis under performance.

The USA Today article was good but there are nits to pick

By Bill Peckham

Coming home from the meeting Saturday, I took Sunday off. I went back to bed after I got off dialysis. Two days of discussing  dialysis reimbursement and the politics of healthcare left me spinning and spent. In that state reading the USA Today article by Rita Rubin Dialysis treatment in USA: High costs, high death rates was refreshing. The article was a great overview of a program I just spent two days discussing but one comment in the article seemed out place. It's in the side bar on prevention where I too am quoted:

J. Michael Lazarus, Fresenius' chief medical officer, says: "Every nephrologist would love to see patients earlier. But nobody sends them. … I've seen them in the emergency room at the end." That's because many rarely have seen any kind of doctor, let alone a kidney specialist, he says. End-stage renal disease "is a disease of the indigent," he says. "They show up because nobody treated their hypertension, nobody treated their diabetes."

"renal disease "is a disease of the indigent,"? Really?

I don't think the way that reads reflects what Dr. Lazarus believes. He knows severe CKD is an equal opportunity disease - I know this because I've spent time with him so I know he knows me. Seriously though, I think it's likely he was saying that poverty is a risk factor for severe CKD. That those who are indigent are disproportionately likely to need dialysis. I don't think my quote in that box reads quite right either:

"It's kind of immoral the way it works now," says Bill Peckham, 45, a dialysis patient and blogger in Seattle. Though about one in five dialysis patients die every year, Peckham says, "you keep the chairs filled with new people, because Medicare doesn't show up until you're in the dialysis unit."

I'm don't think I said those statements in proximity to each other.

I believe the immorality was in reference to the way people are funneled into conventional dialysis - the lack of informed consent. And the second part doesn't sound like how I normally state the problem. Those are three points I make but I don't think they are related in the way the sentence makes it out.

If I had to guess Rita Rubin didn't write the side bars.

Patient Safety Day July 25 - a moment of silence and candlelight vigil

By Bill Peckham

Check out the web site and there is a press release:

Patient Safety Day is held on July 25th annually. Patients, families, healthcare providers and consumer groups join together in a moment of silence and candlelight vigil at noon and 6:00 PM; at home, work or wherever you are - in memory of patients and families who have lost their life or quality of life due to medical errors - and in tribute to those who work to improve the quality and safety of healthcare for future patients. The event now draws participants from more than 40 states and numerous countries.

This is a good time to reflect on the importance of involving yourself in your ongoing care.

Is a robust public insurance plan a threat to the provision of dialysis?

By Bill Peckham

DaVita's first quarter of 2009 Earnings Call (from April 28, 2009) transcript is online available from Seeking Alpha. It includes DaVita CEO Kent Thiry's take on healthcare reform and what a "public plan" would mean for DaVita. At the Kidney Care Partners' meeting recently in DC I heard that alarmist terms were bandied about when discussing what the impact might be of a public insurance plan (here is a PDF making the case for a robust public plan). Reading through the DaVita call transcript it is clear that Davita's business model depends on treating people with private insurance and a robust public plan is seen by DaVita as a threat to their business model.

In prepared remarks to start the call Thiry asks and answers a series of questions on the issue health insurance reform:

Question number two, what benefit would the dialysis received from any expansion coverage for the uninsured? The answer is simple. It would be a positive if we increase the number of insures with private insurance and neutral if the expansion were entirely Medicare. 

His answer isn't complete because it leaves Medicaid out of the equation. Right now if someone has CKD5 and no insurance they will, in most states, have to spend down to qualify for Medicaid. After 33 months they'll qualify for Medicare if they have enough quarters of work. Those with Medicare through disability or CKD5 vintage might still need Medicaid to pay the 20% not covered by Medicare - these are the so called dual eligibles: Medicare primary and Medicaid secondary.

In most states Medicaid is an awful payer. On average 10% of DaVita's patients are Medicaid primary and an additional third likely have Medicaid as their secondary payer to Medicare but at no time during the call is Medicaid mentioned. In some states when Medicaid is secondary to Medicare, Medicaid does not pay the 20% Medicare leaves unpaid. To the degree a public plan would draw in people who are currently covered by Medicaid, dialysis providers (including DaVita) will benefit and it is a significant benefit in states where Medicaid is a bad payer, for instance Florida where DaVita has many units.

Again and again on this call the importance of the private payers are highlighted (note there is an error in the transcript in several places they have "pair" instead of "payer") and health insurance reform is seen only through the lens of what it would mean to the lucrative business of treating private pay patients. I understand that this is a point of view coming from a for profit dialysis provider with fiduciary responsibilities to stockholders, that's fine. But I think this is the wrong way for the KCP to position themselves on the issue.

I think a public plan would be very good for the people of working age who require dialysis and I think a public plan would just as likely increase average reimbursement in many states. I think the KCP should support a public insurance option.

DaVita and the rest of the US dialysis providers are not driving the healthcare reform discussion in DC but as matter of principal KCP should support reform that would allow people treating their CKD with dialysis options, options other than Medicaid. A robust public insurance option would allow people with CKD5 options that are now closed, particularly employment and entrepreneurial options. It would improve the lives of those with CKD5 and there is no reason to think it would decimate dialysis provider finances.

30 Rock musical appeal for kidney donation

By Bill Peckham

The NBC show 30 Rock produced a start studded musical appeal for a kidney last night. The show is a comedy so the lyrics are pretty silly but it still stands as the most star studded appeal for kidney donation I've seen

The stars include Elvis Costello, Mary J. Blige, Clay Aiken, Sheryl Crow, Adam Levine, Adam Horovitz, Mike D., Sara Bareilles, Wyclef Jean, Norah Jones, Talib Kweli, Michael McDonald, Rhett Miller, Steve Earle, Moby, Robert Randolph, Rachael Yamagata, and Cyndi Lauper.

That's quite a line up. Let's hope they all stay engaged with CKD and continue their advocacy on a more serious note.

Lufkin TX dialysis nurse faces death penalty

By Bill Peckham

The Lufkin Daily News is reporting that Kimberly Clark Saenz a former employee of the DaVita Lufkin dialysis unit has been indicted by a grand jury for four counts of capital murder and five counts of aggravated assault. The Lufkin Daily News has a summary of the story and RenalWEB has been keeping a time line of events. This blog followed the story pretty closely last year; DSEN was the first to report the possibility that bleach was involved.

This is going to be a capital case - which means Saenz will likely face the death penalty in a state known for carrying out the death penalty. No doubt the case will receive a lot of coverage perhaps putting the provision of dialysis under a media spotlight. One issue that remains unaddressed, the Lufkin TX DaVita unit problems preceded employment of Saenz.

UPDATE: Renal Business Today has posted the full official DaVita statement following Saenz's indictment.

BCBS of Georgia prevails in law suit

By Bill Peckham

RenalWEB links to a Summary of the ruling in the National Renal Alliance vs. Blue Cross and Blue Shield of Georgia case. The entire ruling is available (pdf link). Reading the ruling I am not sure the summary is accurate when they write:

The dialysis provider's Medicare as Secondary Payer Act claim is dismissed. The claims alleging breach of contract under state law and violations of the Employment Retirement Insurance Security Act (ERISA) are not dismissed and may proceed.

The claims for only some subset of patients who were included in the breach of state law complaint may proceed and the judge writes that he is taking NRA at their word that some of the effected patients are not under the ERISA law (the judge is not impressed by NRA"s brief). The outcome of this last piece of the lawsuit will not impact how much NRA can get paid but it might allow additional reimbursement for services rendered during a three month period when BCBS had not made their coverage change clear to NRA.

With this judicial approach blocked I would expect additional energy around the legislative approach and promoting the euphemistically named Dialysis Bill of Rights in various state houses. The for profit dialysis providers will do all they can to receive what they have established as Usual and Customary Charges. Through the grapevine I've heard that the two Large Dialysis Organizations have raised their rates about 33% in the last 12 months - this would put their usual and customary charges in the $4,000 per treatment neighborhood, over $50,000 a month before separately billable medications.

Meet me in Naples, FL March 31 - April 1, 2009 10:00 am - 2:00 pm

By Harvey Wells

For anyone that lives in the SW area of Florida, I’m going to be doing a home dialysis demonstration in my motor home at the:

ARA Dialysis Center
4529 Executive Dr
Naples, FL 34119
(239) 566-7180

Tuesday March 21 and Wednesday April 1, 2009 from 10 am – 2 pm or when the last person leaves. The ‘Main Event’ (self-cannulation) as I bill it, occurs around 11:00 – 11:15. Get your questions answered, look at the equipment, see how easy the setup procedure is and observe for yourself the freedom and flexibility of travel and staying active on more frequent daily dialysis. If you have any questions please feel free to contact me or call the center. See you in Naples!

NKF has a transplant focus to the exclusion of dialysis

By Bill Peckham

Rich's post gave the numbers showing how many more people use dialysis vs a kidney transplant to replace their renal function and he noted the huge number of adult Americans that are at risk of needing renal replacement. Peter posted pointing out that for the vast majority of those with CKD 5 or transitioning to CKD 5 dialysis is the primary treatment. And readers of this blog know that not all dialysis is equal, that the vast majority of people who need dialysis receive an inadequate dose (sign the petition to help change the status quo). It is in this context that the National Kidney Foundation (NKF) operates.

This picture is one I took back in November at Renal Week, the American Society of Nephrology (ASN) meeting in Philadelphia. I design and produce booths like this for a living; I have 14 years in the business. This is a nice 30' x 30' island booth, among the largest booths at a conference that had a lot of large booths. DaVita's booth at this show was 20' x 20', less than half the size.

Now it could be that they had everything donated from the trade show company (GES, who I use to work for). Maybe the NKF has their own Bill Peckham, someone who was in a position to hook them up with a fancy booth. Maybe the ASN steeply discounted the $30,000 booth fee. Maybe the dozen or so people you need to set up and staff this sort of booth donated their time too, saving additional tens of thousands of dollars. Or maybe since the NKF's transplant drug manufacturer benefactors were at the ASN meeting the NKF decided they should make a big splash and the cost was a feature, not a bug. An example of you gotta spend money, to make money.

After that impressive presence I was very interested to see what their booth looked like at the Annual Dialysis Conference(ADC) I attended last weekend in Houston. I circled the exhibit hall, walking its wide aisles twice and did not see an NKF exhibit at the ADC. From flat screens, couches and hanging signs, to zip, nada, zilch- the NKF stiffed dialysis and the hard work of advocacy for improved dialysis outcomes. Maybe it's because I'm in the business but to me this says all you need to know about the NKF's renal replacement priorities.

Complaints can save lives: Hepatitis linked to closed NYC Dialysis unit

By Anna Bennett

The saga of my old DaVita Unit, Life Care Dialysis continues.  Today the New York Times ran the article Manhattan Dialysis Clinic May Have Infected Patients With Hepatitis C.

Excerpts:

The patients whose infections were genetically linked came in for treatment on the same days of the week, and two had been hooked up to the same dialysis machines, the investigators reported.

The clinic tested patients occasionally for hepatitis C and was aware that some had tested positive for infection with the virus, but it never informed those patients or state health officials as required, the report said.

The investigation was triggered by a patient who called state health authorities in January 2008 to complain that the clinic was dirty, said Dr. Jenifer Jaeger, a C.D.C. officer assigned to New York State and the new report’s principal investigator.

The Office of Health Systems Management, part of the New York State Health Department, began an investigation in March, Dr. Jaeger said. It found, among other things, that the patient who made the phone call had tested positive for hepatitis C in January. “She had not been informed,” Dr. Jaeger said.

and

The dialysis center was described by the investigators as a filthy place where employees did not wash their hands properly, disinfect equipment or always wear gloves when treating patients. Dried blood was found on treatment chairs, bleach solution was not stored or prepared properly, and there was no separate clean area for storage or preparation of medications.

The dialysis center, located at a convenient spot near public transportation, operated at full capacity, and turnover time between patients was short, investigators said.

In one case described in the report, a single bleach-soaked gauze pad was used to clean an entire patient dialysis station, including the machine’s surfaces and equipment like the blood-pressure cuff and shared computer monitor and keyboard. Many staff members were unaware of the center’s written infection control policies about cleaning and disinfection.

I could write for days and day with editorial commentary about this story.  The lesson learned, one patient made a phone call that saved many more from possible infection.  If you see something wrong, complain to the State.  These are our lives, and the lives of the people that we love - silence kills.

How to complain:  (from aakp's What Should I Do If I Have a Concern With My Dialysis Facility?

Alternative Complaint Resources

If you have identified an area of concern and you do not feel comfortable reporting a complaint to your physician or using the grievance process put forth by your clinic, you always have the option of reporting the complaint to outside agencies. The two primary agencies are the ESRD Networks and your State Survey Agency. Both are capable of receiving and acting on your complaint either alone or with the other agency.  

The ESRD Networks, of which there are 18 throughout the country, are contracted by CMS to receive and act upon patient complaints. Your clinic should have your Network’s number posted or you can ask a staff person to provide you with the telephone number. You can also access the Forum of ESRD Networks on the Internet at www.esrdnetworks.org. This site contains a detailed map of the areas covered by each ESRD Network, as well as a link to the Web site of each individual Network.  

The other alternative is to contact your State Survey Agency directly. State Survey Agencies are responsible for the licensing and certification of outpatient dialysis clinics and handle individual patient complaints. You can access a directory containing the contact information for your State Agency on the CMS Web site at www.cms.hhs.gov.

Finally, here is a link to my post about NY's ESRD network reaching out to me after the DaVita Life Care closure.

New Health Reform Czar former DaVita Director

By Bill Peckham

Today President Obama named Nancy-Ann DeParle as White House health care czar:

As director of the White House Office on Health Reform, DeParle will work with Sebelius as the president's point person coordinating outreach to Congress on the administration's ambitious health care reform agenda.

DeParle was the administrator of CMS in the Clinton Administration. Until her resignation last year DeParle served on DaVita's board and at the time of DaVita's 2008 SEC proxy statement, she held 38,984 shares of DaVita stock, worth about $1.8 million at today's price. In 2007 DaVita provided her a Director's compensation package worth $193,913.

Beyond serving on the DaVita board DeParle should be familiar with the provision of dialysis after six years as a MedPAC commissioner. She was appointed to MedPAC in June, 2002 (pdf link) and reappointed in May 2005 (pdf link), she left the commission in June 2008 about the same time she left the DaVita board.

White House releases DHHS budget details

By Bill Peckham

The White Housed posted details of the 2010 fiscal year budget, the Department of Health and Human Services budget details comprise a four page pdf. The element that has gotten the most discussion on the CKD Discussion boards is on page 4:

Compares the Effectiveness of Treatments. Building on the unprecedented $1.1 billion included in the recovery Act for comparative effectiveness research, the Administration will continue efforts to produce state-of-the-science information on what medical treatments work best for a given condition. When coupled with electronic health records, these findings can form the basis for clinical decision support tools— distilling all available evidence on the outcomes of different treatment options into user-friendly pop-up alerts for physicians at the point of care. These findings can thereby enhance medical decision- making by patients and their physicians.

This initiative has been held out as the first step to rationing, first in an online commentary, which was then repeated, causing a response everywhere else rightly pushing back on the commentary's conclusions.

The dialysis industry is ahead of the curve on electronic medical records (EMR). CROWNWeb is meant to collect just the sort of outcomes data this initiative calls for and with the additional EMR spending in the budget and in the Recovery Act I hope CROWNWeb will be able to accept batch data from all providers very soon.

This sort of comparative analysis of costs and benefits are what many advocates for optimal dialysis have been calling for for many years. When we say we want to tear down the wall between Part A and Part B it is because we think if total costs were compared high dose dialysis would come out on top. I think if all available evidence on the outcomes of different dialysis treatment options for someone transitioning from CKD4 to CKD5 were distilled into a pop-up alert then it would recommend frequent home dialysis a majority of the time.

DHHS Secretary nominee Daschle withdraws nomination

By Bill Peckham

This is big news. Tom Daschle, a former Senator, was initially expected to be quickly confirmed. Now that he has taken himself out of contention for Secretary of the Department of Health and Human Services the focus will be on who President Obama will select to serve instead.

Daschle was seen as someone with the political savvy to get healthcare reform legislation through the Senate but I think the political dynamics have changed. Today President Obama is expected to formally announce Sen. Judd Gregg as his Commerce Secretary. By selecting someone to his political right Obama will face mounting pressure to appoint someone to his political left for the high profile job of DHHS Secretary. The Obama cabinet is also heavy on Senate alumni which might push Obama to look to the country's Governors for his next health czar.

If that calculus drives the nomination I would expect Howard Dean, former Presidential canidate (one hopes his finance are in order) and former Vermont governor to be at the top of the list.

NYC Says NO to Salt

By Anna Bennett

We at DSEN have been writing about salt and how salt has a negative affect on those with CKD - both in the hastening the onset of CKD5 and too much salt making dialysis inefficient. In an effort to promote better health (and lessen the burden on our underfunded over stressed public healthcare system) the city of New York has started a campaign to Cut the Salt. 

Although there is no mention of CKD, this is a step in the right direction to keep people off dialysis.

Americans’ salt intake has increased dramatically in recent decades. We now consume almost twice the recommended limit of salt each day – but not by choice. Nearly 80% of the salt in our diet is added to processed and prepared foods before we buy them. Reducing salt in food will lower blood pressure in people with hypertension. Salt reduction will also help prevent strokes, heart attacks, and other problems in people who don’t have clinical high blood pressure.

The initiative calls on food industry leaders to help develop, and then adhere to, sodium targets for all products, using categories such as breads, breakfast cereals and prepared entrees. The goal is to achieve substantial, gradual reductions in salt levels across a wide range of foods. Meeting salt reduction goals will require significant changes in food manufacturing practices, but the changes are feasible.

The website also contains some helpful links:

Their Health Bulletin with facts and helpful hints, including a page with the sodium content of popular foods - which is full of sobering numbers.  Like one tablespoon of ketchup is 8% of your daily sodium.  One canned biscuit (the kind you pop and bake) is 24% of your daily sodium.  This list blows my Beware Hidden Salt post out of the water, and just goes to show that salt is everywhere.

The New York Times picked up on this story with the article Throwing the Book at Salt and created a graphic of Where Salt Lurks.

This is all information that you can use to live a healthier and longer life.

Alport Syndrome chat tonight, 6PM Pacific

By Bill Peckham

Kidney Space, the Renal Support Network discussion board, is having a live chat tonight January 20th. The discussion will concern Alports Syndrome. You'll need to be registered as a member of the Kidney Space discussion board and then, while logged in, launch the flash chat. The chat will start at 6:00 PM PT (in Seattle, 7:00 PM MT, 8:00 PM CT, 9:00 PM ET or 2:00 AM Greenwich mean time).

The Internet allows real time communication in a number of ways. Chat is a way for a lot of people to join in a conversation. It can be a little confusing because more than one conversation might be going at once but give it a few minutes and you'll get in the rhythm. Sign up and join the Kidney Space community.

World Salt Awareness Week is February 2nd - 8th

By Bill Peckham

World Action on Salt and Health (WASH) is holding its 2nd annual World Salt Awareness Week on February 2nd. This year the focus is salt eaten outside the home. That's a helpful focus - there is no reason people can't salt food to taste rather than having it over salted back in the kitchen. There are a lot of people who have not yet gotten the message, WASH has a lot of education work still to do.

It's true the guy did give her a kidney but everything else appears to be a total lie

By Bill Peckham

I've held off on commenting on the man wants his kidney back stories that have been widely discussed on not only CKD discussion boards and listservs but throughout the national media. It supposedly brings up questions of ethics and should we pay for organs. I don't think it does but I do know one thing: You should never think that you know what happened in a marriage if you've only heard the story from one of the spouses.

HDCN links to Dawnell Batista, wife at center of kidney case breakup finally tells her dramatic story published in the Daily News and sure enough it turns out the guy is a lying liar and a gigantic jerk. When the lying doctor "told Larry King his reason for divorce was “infidelity.” He didn’t say it was his own." In fact the wife has an incredibly sympathetic story and it is an indictment of the media that they took this liar and his Howard Stern lawyer at face value.

The one part of the story that the highly believable Daily News story missed is that the lying doctor also impacted people far removed from his self centered universe. This idea that your donor could come back years later and want your kidney will add another factor against in the calculus of accepting a kidney from a living donor. I am waiting for Larry King to have Dawnell on, as well as her corroborating friends so that the lying doctor can be properly held up to public ridicule and scorn.

While Larry is on the topic he should also have on his show someone from Donate Life (if it was up to me I'd call it Sustain Life, but whatever) to talk about living donation and why this one particular lying jerk shouldn't enter into anyone's personal calculus on whether to accept a kidney from a living donor.

Creatively improving the provision of dialysis: the Hana, Maui model of communial home hemo

By Bill Peckham

In March of last year I wrote about the effort to provide dialysis in the remote community of Hana Maui. On Saturday The Maui News posted an article, Hana home dialysis sets a Feb. 20 start announcing the launch of an innovative home hemodialysis program. The innovative feature of this program is the home hemodialysis will be provided in a neutral location, a home donated for the use of all the dialyzors in the community (currently 2 but the number ebbs and flows, 5 additional people have been identified with CKD).

The Maui News article announces that a building, formerly a residence for the community doctor, has been turned over to the community for the use of as a communal home hemodialysis center. This is a final step; the most critical step was taken in October when the Centers for Medicare and Medicaid Services (CMS) approved a first-of-its kind arrangement. The dialyzors in Hana will go to a local home, where their own machine (provided by Liberty Dialysis) will be set up by trained community volunteers (trained by Liberty Dialysis) and these volunteers will serve as dialysis helpers. You can read the letter from CMS Regional Administrator Deborah Romero authorizing Liberty dialysis to provide communal home dialysis, it's exhibit C on page 8 of this pdf.

I think this could be a model for care in other rural communities without enough dialyzors to support a small unit. Beyond economics an advantage of co-locating home dialysis machines would be to address some of the reasons people are reluctant to choose home hemodialysis. A dialysis co-op would preserve the social atmosphere of going through dialysis incenter, the space issue related to storing home hemo supplies and equipment would no longer be an issue and family members would not have to be be exposed to the treatment or have to provide support so they could continue to avoid dealing with their loved one's condition. Kudos to CMS and Liberty Dialysis for supporting this innovative program.

The group that has been formed to provide support and advocate for all this is called Hui Laulima O Hana. I'll be interested in following the co-op's progress.