Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 10/31

By Miriam Lippel Blum

There are only 17 days left to get your voice heard by CMS in regard to the new proposed rule for dialysis payment. Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn.

Here are the CKD related blogs updated since my last report on 10/28. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill reports on the the rapid spreading of the H1N1 virus.
• Kamal Shah's Blog Kamal finds that he can reduce the water he drinks if he drinks hot water instead of cold or room temperature. (A good tip for dialyzors with fluid restrictions.); after discovering that his dialysis machine had a blood leak while he slept on nocturnal dialysis, Kamal buys a Dri-sleeper which is a moisture sensor so an alarm will go off if this happens again.
• Kaply, Inc. Tracy is having vascular surgery next week and sinus surgery the week after that, she would like items of amusement while she heals; Tracy doesn't celebrate Halloween.
• Toastiest Toastie tallies the things stolen from his yard in the last three yeas; a photo of him playing with his cat on a night without dialysis.
• Becky Perry Becky is going to talk to doctor about taking meds for depression, referral to a sinus specialist. is really bothered by restless leg syndrome; her Friday Felicity feature.
• Life on dialysis ... and now life after my transplant! Holly lists all the things she has done in the year since her transplant, how great she feels now, and her plans for the next month.
• On the Road to a Cure The Lupus Foundation of America (LFA) is participating in an international online voting competition that covers major innovations in web technology and social media and would like to take the category of “Best Non-Profit Use of Social Media.” Help them win by submitting a nomination.
• I Am. Are you? shares a video entitled Organ Donation: Waiting for a Second Chance with Bill Coon's sister.  Bill just received a heart and kidney transplant.
• Transplant Alliance has a number of fanciful posts about the World of Warcraft (WOW)- fantasy game. (This was totally beyond me, but I suppose players might enjoy it.)
• Chronic Chick Talk recommends taking an inflatable mattress for comfortable sleeping on camping trips.
• Linda Gromko MD kidneycare is a new blog. Linda Gromko, MD is a family physician whose husband, Steve Williams, receives five Home Hemodialysis treatments per week. Dr. Gromko's blog explores issues of treating Renal Failure at home, making the treatments more user-friendly, and supporting the all-important caregiver in the family on Home Dialysis.  She has some posts introducing her blog.  The latest entry is her advice about getting a fistula to a patient nearing renal failure.
  
• Renal Fellow Network Nathan is presenting a "Renal Fellow Network" poster at the poster session on Saturday, 10/31 (SA-PO2863) if anybody would like to drop by & chat; PPAR alpha activators may aid in the prevention of AKI in high risk patients.
• Uremic Frost  Introduces a new website called Ureakinetics.org maintained by Chicago nephrologist Dr. John Daugirdas.It aims to provide a home for Solute-Solver and related programs linked to urea kinetics and adequacy of hemodialysis; a study shows extreme increases in muscle mass require the kidneys to increase their filtration rate, placing harmful levels of stress on these organs. It may also be likely that anabolic steroids have direct toxic effects on the kidneys; a paper was just presented at the ASN meeting in San Diego claiming younger nephrologists tend to send their patients for renal transplantation preemptively more frequently than the more senior nephrologists.
• Neophron's Senescence a video musical song in support of the public insurance option.
• pkdmom2five Amy has some advice for people who send hurtful comments anonymously over the internet. (Right on! if you don't want your words attached to your name then you probably shouldn't be sending them.)
• Dialysis and Me Barry posts about the importance of organization when you travel with dialysis; he and Laura celebrate their third anniversary and he remembered;  three videoblog entries about  their trip to Cape Canaveral, Laura reviews a Brazilian restaurant they visited.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has information about the potassium in lime juice (For all those margarita drinking dialyzors out there.); a link to a controversial paper he coauthored about how bodybuilding with steroids damages kidneys
• The Ballad of Billy The Kidney links and comments on an interview with Therese Rein, wife of the Prime Minister of Australia, the Rt Hon Kevin Rudd MP.  Ms Rein had some very interesting and worthwhile things to say about identifying one's health strengths and then running with those - rather than being fixated with the negatives.
• The inner game of PKD discusses the meaning of "support" as it applies to those with PKD and finding it on the internet and elsewhere..
• Kidney Diet Tips Diet tips and recipes for Halloween.

H1N1 Flu (Swine Flu) Continues to Spread Rapidly

 
By Bill Peckham

Two weeks ago the CDC changed how they presented the data for percent of patient visits reported through the U.S. Outpatient Influenza-like Illness Surveillance Network. I created the image below based on the previous reporting style of layering each year's data:

Now for the last two weeks the CDC has been presenting the data as a continuous line with one year following on the one before:

The same data is being displayed in each graph but the upper graph gives a clearer picture of the current situation. Right now when influenza like illness should be at a yearly low ebb, influenza like illness is more prevalent than at any time during the peak of recent flu seasons.

This chart is updated to October 24; going by news reports the H1N1 virus is increasing in prevalence. I may have to extend my Y axis beyond 10%.

Dialysis & CKD Report 10/28

By Miriam Lippel Blum

There are only 20 days left to get your voice heard by CMS in regard to the new proposed rule for dialysis payment. Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn.

Here are the CKD related blogs updated since my last report on 10/25. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill argues why CMS should not use race/ethnicity as a basis for a case mix adjustment; the outline of comments from NxStage's Joe Turk given at the CMS Town Hall meeting.
• Kamal Shah's Blog Kamal figures out how to disable the app updates in Facebook (Now you're not going to know how I'm doing in FarmVille.  Phooey!); the technician who assists Kamal with his nocturnal dialysis may be getting married and Kamal has to find a way to get adequate training so he can do without him.
• Kaply, Inc. Tracy posts a cool video of bent metal art; goes to Ikea and introduces a friend to their fabulous Swedish meatballs; Tracy is getting the sweater she desires for Christmas, but also has to have a fistula revision or a stent. (Try to avoid the stent if you can, they don't last very long.)
• Toastiest Toastie breaks his record on the iPhone Skeeball game but thinks he should be doing something else with his spare time.
• Hasten down the wire Michael writes about the social implications of hypermedia.
• The Life of a 20-Something With Lupus While on her bus ride home, Flo watches an intoxicated man try to cross a busy street, she finds a mysterious lump on her knee; she gets scammed by a phony website.
• Becky Perry reviews A Little Help From My Friends by Anne Dayton and May Vanderbilt; a link to the SwagBucks website.
• On the Road to a Cure Factors that influence pregnancy outcomes in women with lupus; BioVid is looking for men with lupus who are 65+ years of age to take part in a survey, which will take about 45 minutes to complete. For those selected to participate, there’s a $75 stipend.
• Really, I'm as Old as I Feel? a photo of 2-year old Abby picking a pumpkin.
• I Am. Are you? Morgan D'Organ needs help deciding on his Halloween costume.  Vote in his online poll.
• Transplant Alliance Gwen has a post about really taking time to get to know someone before getting involved romantically;  writes about the challenges and rewards of being a foster parent.
• Chronic Chick Talk has a Madonna video for Music Monday; describes how she dealt with fleas on her dog; has a hard time keeping her Vitamin D level up; didn't have the energy to deal with a dishonest seller; a photo of two dogs enjoying the smells on a walk.
• Bud's Ramblings Bud loves watching the cows in his neighbor's yard and shares some trivia about cows, likes Bag Balm for chapped hands. (It sounds "udder-ly" ridiculous, but it works!)
• Precious Bodily Fluids has uploaded his entire Fluid, Electrolyte and Acid Base Companion to Sribd and you can download it for free.
• Renal Fellow Network a study shows that renal cilia length increases with acute tubular necrosis; mechanisms associated with saline expansion-induced metabolic acidosis.
• Uremic Frost Dr. Prince supports and signs the Every Other Day Dialysis petition and urges you to do the same.
•  Neophron's Senescence responds to an argument against the public insurance option.
• pkdmom2five shares her son's birthday party photos; thanks her friends who  made the party special.
• Dialysis and Me shares a video of fun and games with his dog, Jojo.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to a review article that details recent advances in the genetics of atypical hemolytic-uremic syndrome; a link to a heart-wrenching necrotizing fasciitis case in NEJM.
• Lemonade and Kidneys Ruth sets up her Seasonal Affective Disorder (SAD) light machine on her desk to perk herself up.
• The Ballad of Billy The Kidney John links to and comments on a news article about revisions being considered by Australia and New Zealand that would match kidneys from older donors after death to elderly recipients.
• The inner game of PKD Richie participated in the Greater New York City area Tri-State PKD Walk, and would like to find ways to get more PKD sufferers to connect for mutual support and encouragement.
• My New (transplanted) Kidney Al updates on labs and status three months post-transplant.
• DailyHemo - Home Dialysis Advocates New Videos: Grand Opening of Hale Pomaika'i Dialysis Clinic - Hawaii; Carla & Hanna - Home Dialysis; Florence Tewogbade and Her Kidney Disease Journey.
• Biologically Safe Water Filters A new initiative was announced by HHS Secretary Kathleen Sebelius, to fight costly and dangerous health care-associated infections (HAI’s). Hospital water systems are a source of many infections.  Water purification will reduce or eliminate these waterborne infections.  Nephros Dual Stage Ultrafilters can help.
• Kidney Community Emergency Response Qualitest Pharmaceuticals and the FDA notified healthcare professionals of a nationwide recall of Accusure Insulin Syringes. All syringes, regardless of lot number, are subject to this recall. The syringes in these lots may have needles which detach from the syringe. If the needle becomes detached from the syringe during use, it can become stuck in the insulin vial, push back into to the syringe, or remain in the skin after injection. Click here for more information.
• NephrOnline Blogs Mark E. Neumann gives an excellent summary of the presentations given at the CMS Town Hall meeting on the payment bundle.
• Renal BizBlog reports on the extensive backlog of dialysis clinics in Texas awaiting CMS certification.
• Team Teddy Bear Bob visits the Walkway over the Hudson, a new state park made from a former railway bridge into a path across the Hudson River from Poughkeepsie to Highland, photos from the field trip.

Turk's comments on behalf of NxStage at the CMS Town Hall meeting

By Bill Peckham

The recording of the CMS Town Hall meeting on ESRD Prospective Payment System Proposed Rule is available until Thursday October 29th. RenalWEB has linked to some of the comments that have been made available; what follows is the outline Joe Turk spoke from on behalf of NxStage:

Good morning

• And thank you for this opportunity to comment on behalf of my colleagues and partners.
•  Since 2005 at NxStage Medical, we’ve been providing hemodialysis devices designed for the home that have at least partially enabled a modest rebirth of home hemodialysis in the United States.
• In my comments, I’ll focus on access to home HD and how the proposed rule addresses home HD training. I’ll echo on some comments previously made, and hopefully expand on these as well.

In our review of the proposed rule…

• The Agency’s desire to encourage home dialysis comes out loud and clear, and we applaud this. Many proposed policies are quite supportive of home HD, namely the treatment as the unit of payment, medical justification provisions for more frequent dialysis sessions, and the addressing issues with separately billable injectables in the home.
• However, we have serious concerns about how home HD training is addressed in the proposed rule
• We feel that inclusion of training into the base bundle is inappropriate because of training’s investment significance and non-routine nature, and feel that home HD training should be handled with an adjustor.

So first, training represents a significant, essential investment by the dialysis provider.

• Home patient training is a necessity, not an option. Training transforms a patient from a health care novice to an expert in his or her own care. Without resources and provider investment, patients cannot go home.
• Our data representing thousands of patient experiences over multiple years show that home HD training requirements average 5 days per week for 3 to 4 weeks, representing 100 hours or more of 1:1 RN time per patient.
• The Moran Company also analyzed Medicare cost report data for home HD training. This study found average costs of $394 per training session, approximately $250 more per session than the base composite rate. This amount is consistent with the reported labor requirements of training.
• So, home HD training is far from a trivial expense for the provider. It also differs in scale and scope than that of PD. Home HD and peritoneal dialysis are very different animals, and I caution anyone from applying generalizations of what we know about PD to home HD. We cannot assume it directly applies.

Second, training is clearly a non-routine activity

• Only 15% of centers offer home HD therapy today. At even these centers, only a subset of their patients are trained each year.
• Training sessions represent only a tiny fraction of one percent of total treatments.
• Paying for training in the bundle compensates clinics who are not even offering home modalities, while taking funds away from those that are.
• As such, inclusion of training costs into the bundle will not provide encouragement to pursue home HD training activity given the large up-front investment per patient; in fact, the reverse will be true.

Third, we believe that training should be addressed through an adjustor, but importantly the first 4 months adjustor does not adequately achieve this objective

• In the proposed rule, adjusters are applied for select high cost service episodes or situations, and training is in concept similar
• In fact, it is noted in the proposed rule that the first four month adjustor is intended in part to support home HD training. Practically, however, this is not the case. Based upon third party analysis of a large cohort of patients initiating home HD therapy over recent years, only 15% were in the first 4 months of therapy. This adjuster applies only to a small minority.

In summary

• We are at an exciting juncture, where home HD could finally become a practical reality for more than 1% of patients and part of the fabric of kidney care.
• But, we can’t forget home HD therapy remains in its infancy and is vulnerable, and is different from established PD and HD options in this regard. Payment policies will either support ongoing maturation or could inadvertently stall or reverse access.
• Again, NxStage is pleased that the proposed bundle is largely supportive of home HD therapy, but believes home HD training must be addressed differently if providers are to invest in the resources necessary to build and maintain home HD programs. This is a real gap today, as Bill Peckham mentioned.
• We urge CMS to address home HD training using the adjustor construct and to use the best available data to create an appropriate payment amount.

THANK YOU AGAIN FOR THIS OPPORTUNITY TO COMMENT

I certainly second Turk's remarks, it is inappropriate to include home training in the base payment rate.

The change CMS is proposing to the way dialysis is reimbursed is an historic, one time opportunity. After the proposed rule goes into effect it will be much harder to make a change. This is what happened in 1983 when the first composite payment came into effect - when that rule was proposed a mechanism to update the payment to accommodate inflation was not included. It's taken over 25 years to fix that by getting a law passed by Congress and signed by the President! I do not want to spend the next 25 years lobbying Congress for a training rate that has some relationship to training costs.

I think it is clear that without a training rate significantly greater than the base rate access to home dialysis, particularly home hemodialysis will be limited. 25 years from now no one wants to look back and see access to healthier forms of dialysis limited to certain zip codes. All Medicare beneficiaries should have the access I do to clinically superior frequent dialysis in the home.

Turk is right that we are at "an exciting juncture", a proverbial fork in the road. Down one path lies the penny-wise policy of paying for home training at the same rate as routine incenter dialysis. This path dwindles as it disappears over the horizon because fewer and fewer dialyzors are offered this healthy route. The other path is the one CMS should develop, the path of adequately reimbursed home dialysis training. Looking towards the horizon this path grows over time as home dialysis training capacity increases. As the census of dialyzors at home grows so too will grow the number of dialyzors living the lives they were meant to live but for their CKD.

CMS should take this historic, one time opportunity to set us on the path to optimal dialysis, CMS should adequately reimburse for home dialysis training.

Medicare shouldn't use race/ethnicity as a case mix adjuster

By Bill Peckham

When CMS published the proposed new dialysis payment model they did not use race or ethnicity as a payment adjuster but they did request comments on the idea (page 46 of large PDF):

We specifically invite public comment on the data issues presented in this section, other data sources for race and ethnicity we should consider, and specifically, the need for adjustments for race and ethnicity in the final ESRD PPS.

I think CMS was right to not include race as an adjuster.

Race is not a biologic concept, it is a social concept. And as a social concept it has been judged by the Supreme Court to deserve condemnation:

Over the years, this Court has consistently repudiated "[d]istinctions between citizens solely because of their ancestry" as being "odious to a free people whose institutions are founded upon the doctrine of equality." Hirabayashi v. United States, 320 U.S. 81, 100 (1943)

To contravene the doctrine of equality and include a case mix adjustment for race there would have to be a biologic basis for the various racial classifications. There is no biological basis for racial categories. A person's classification is commonly based on self-reported information. Self reported information is problematic, particularly with regard to racial/ethnic classifications.

Who is considered Hispanic? Who is Hispanic is a social, or mental construct that varies from community to community, however, checking that box would have serious consequences if you need dialysis. Under the two data sources CMS evaluated, REMIS/CMS Form 2728 and the Medicare Enrollment Database, those self identified as Hispanic would be reimbursed less, 14.2% and 16.3% respectively, then some who self identifies as white. It would be wrong to reimburse someone's dialysis less based on their identifying with a particular community.

The Kidney Care Council, DaVita and the American Kidney Fund (AKF) spoke in favor of including a race/ethnicity adjuster to the new expanded dialysis payment rate during their comments at CMS's Town Hall meeting Friday (Uremic Frost has posted the AKF's remarks). The AKF noted studies that report African Americans require higher doses of EPO to maintain a their hemoglobin in the target range. Their phrasing points up the problem. How are they using the term African American - what is their definition? Does it include those from the Caribbean? First generation immigrants from Africa? From South Asia?

Medicare was right to not include race/ethnicity adjusters in the proposed dialysis payment model. In general I believe, in the name of simplifying the payment model, that there should be fewer patient level case mix adjusters and that those that are used should be based on underlying clinical conditions.

Dialysis & CKD Report 10/25

By Miriam Lippel Blum

The clock is ticking everyone! Comments on the Proposed Rule are due to CMS by end of business on November 16. Submit them here. If you don't understand how this rule might impact your dialysis care then go to the Renal Support Network's Kidney Public Policy 101 and learn. If we don't stand up for ourselves, who will?

Here are the CKD related blogs updated since my last report on 10/22. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill posted the comments he made at the CMS Town Hall meeting on the ESRD Prospective Payment System Proposed Rule; Bill notes that the audio recording of the CMS Town Hall meeting will only be available for four days and thinks that it should be available until the end of the open comment  (It was excellent, definitely worth hearing. I think they are only having it available for four days to limit patient exposure to it. Less exposure means fewer complaints.);  Rich Berkowitz also spoke at the Town Hall meeting and shares his comments, as well as urging us all to submit our written comments for CMS's consideration; Bill posts Dori Schatell's testimony from the CMS Town Hall meeting and applauds her for bringing the 2-day killer gap to the attention of both CMS and the entire renal community.
• Kamal Shah's Blog Kamal reports that the Andhra Pradesh state government in India is extending a program for dialysis with 111 new clinics where patients can obtain dialysis three times a week - free of cost. a revolutionary step.  He also doen't understand people who think less dialysis is acceptable treatment.
• Kaply, Inc. Tracy lists things she loves, including a cashmere sweater, is having fistula surgery yet again and might have to have sinus surgery. (Tracy, you would look gorgeous in that sweater and if you have to put up with all the health stuff you do, darn it, Girl, I think you deserve some cashmere!)
• Toastiest shares a photo of his cat.
• Birdman Sparrow's wife has a cold, a neighbor brings soup, Sparrow needs a keyboard for music and for his transplant pager to go off.
• The Life of a 20-Something With Lupus Flo looks forward to her week off, finds it difficult to juggle nocturnal dialysis and early morning appointments to which she must travel by public bus, she also yearns for her kidney pager to ring.
• Becky Perry Becky's boys have colds, she does lots of laundry, and is addicted to crunching Ice Breaker mints which she thinks is a dialysis thing. (People do all sorts of things to combat thirst and dry mouth.)
• Life on dialysis ... and now life after my transplant! Holly's brother gets "Live Life Then Give Life" tattooed on his back for her which delighted her; Holly celebrates the day she got "the call" for her kidney with some photos and reminisces about it and how her life has changed, she expresses gratitude to the donor and their family for the amazing gift they gave her.
• The Daily Dialysis Bonni is amused to find out that Mark's nephrologist discovered her blog when he googled himself, he noted that she likes to write and uses it to vent, she now has a following of dialyzors, caregivers, dialysis staff...and at least one doctor.
• I Am. Are you? has an interview with Donate Life Illinois’ hard-working Volunteer Coordinator, Jane Lee-Zimmer.
• Transplant Alliance A young woman, member of a donor family, shares thoughts about eye donation.
• The Ins and Outs of Dialysis Gayle describes clinic visits and how she and John lighten the mood.
• Chronic Chick Talk urges supporting the Lupus Foundation of America in America's Giving Challenge to help them win $50,000; some tips for traveling when you have a chronic illness; her Friday Fill-ins feature; a link to a bed cover to keep the bedbugs away from you; a photo of her dog, Mason, hiding under a chair; is surprised at how furniture styles change from year to year.
• Precious Bodily Fluids Joel manages to revive the files from his first book Fluid, Electrolyte and Acid Base Companion and shares the first chapter. He will be editing and revising it to provide a modern, comprehensive tutorial about fluids and electrolytes aimed at medical students and residents.
• Renal Fellow Network A review shows that renal biopsy complications occur in 7.4% to 19.5% of patients. These mostly consist of self-limiting macroscopic hematuria or a peri-renal, or subcapsular, hematoma.
• Uremic Frost has a photo of a thoracic kidney, an extraordinarily rare congenital anomaly. It is more common in men and usually found in the left thorax. It is also completely benign and does not require any intervention; a clever video called "Assault by Salt" about avoiding excess sodium intake; a study showed that higher intensity CRRT (continuous renal replacement therapy) prescription in the ICU resulted in a lot more hypophosphatemia, but unfortunately, no reduction on the mortality rate; a nice video about the NKF Kidney Walk; the testimony given at the CMS Town Hall meeting by LaVarne Burton,  President of the American Kidney Fund; the FDA has just approved APP Pharmaceutical’s Chlorothiazide Sodium (Diuril) for injection. The drug is approved for use in the treatment of high blood pressure , as well as fluid retention in people with congestive heart failure, cirrhosis of the liver, kidney disorders, or edema caused by taking steroids or estrogen;  a study in the New England Journal of Medicine  showed that nursing home residents requiring renal replacement therapy with hemodialysis suffered "substantial and sustained" declines in functional status after the initiation of therapy.
• Renal tsar's blog The UK's Dept. of Health is introducing a new capacity planning software model called MORRIS (the model for optimizing renal replacement investment and services).  MORRIS has been constructed to support policy making and commissioning of renal replacement therapy services for adults in England and is now available for anyone who wishes to use it. NHS Kidney Care will be interested in hearing comments and views of all stakeholders.
• pkdmom2five Amy posts pictures from a family visit to the pumpkin patch; quotations regarding religious revival; photos from the birth of her son, Isaiah.
• Dialysis and Me Barry has been busy making model soldiers and proves it with photos; a video of him and Laura organizing his Warhammer stuff; a picture of another model he will make called the Fortress of Redemption; a video of his participation in the American Heart Association's Heart Walk.
• Kidney Notes - Exploring the Intersection of Medicine and Technology posts a very clever animation from NPR about how a virus does its thing in your body. (After you watch this, you'll go get your flu shot.)
• Lemonade and Kidneys Ruth will be at the Swarthmore Co-op's Food Festival come rain or shine.
• The inner game of PKD  If you sense that you, the PKD patient, could use an injection of fortitude, Coach Richie invites you to contact him to discover how to tap into your natural store of fortitude.
• Kidney Diet Tips has low potassium diet tips and recipes.
• Team Teddy Bear Bob's grandson receives Confirmation at his church.

Mend the Gap - Schatell's comments to CMS and the renal community

By Bill Peckham

I liked a lot Dori Schatell's remarks during the CMS Town Hall meeting on the ESRD Prospective Payment System Proposed Rule. Schatell is the Executive Director of the Medical Education Institute, which is probably best known for its troika of dialyzor centered websites: Home Dialysis Central, Kidney School and Life Options. Less know is the role Schatell has played online with MEI's discussion boards and also with the Dialysis_Support listserv where she has patiently answered questions for 13 years. Schatell is a tireless advocate for optimal dialysis through dialyzor education and involvement in their own care.

The dialyzor is central to MEI's evaluation of CMS policy. MEI has published a draft of their written comments to CMS on the proposed rule (PDF link). They are very good, very thorough. When given the opportunity to speak at the town hall rather than present a summary of these written comments MEI took the opportunity to address the entire renal community about a topic dear to my advocacy heart. As a strategy that was a great idea.

Here are the Medical Education Institute's comments Schatell presented to the CMS Town Hall Meeting 10/23/09:

Thank you for the opportunity to speak, and for all of the countless hours you must have put in compiling this proposed bundled.  I’m sure it wasn’t fun.  Like many others today, we agree with the concerns that have been expressed about including oral medications and lab tests, the overall complexity of the bundle, and the impact of both on patient co-pays.  But that’s not where I’ll be addressing my remarks today.

At the Medical Education Institute, we don’t work day-in and day-out in dialysis centers.  So, that gives us the luxury to step back and observe the renal community from a bit of a distance.  We take a long-term, strategic view.  And one observation that we’ve made is that it’s very important to periodically challenge our assumptions.  They are not gospel.  

For example, the case-mix adjustment is based on completely unvalidated 2728 data—which means we are building a structure that can affect patient care on top of a house of cards.  We strongly recommend that those data be validated—that a sample of them each year be checked for accuracy.  Maybe you’ll find that they’re 100% accurate.  But I don’t think so.

We also need to challenge the assumption that it’s okay to do dialysis just three times per week.  We were very pleased to see that CMS included the possibility of more frequent hemodialysis treatments in the proposed bundle, with medical justification—but I think you need to go one step further, and eliminate medical justification.  Here’s why.  Each year in the U.S., about 110,000 people start dialysis—and about 87,000 people die, a rate that has only improved by about 2% over the past decade, and which is worse than any other industrialized nation.  

Now, you might think that all of those deaths are evenly distributed among the seven days of the week.  And, for peritoneal dialysis, they are.  But for standard hemodialysis, that’s not true:  Bleyer’s studies, compiled from USRDS data, found that the risk of death, of sudden cardiac death, is 50% higher than expected on the day after the 2-day dialysis weekend.  And, in fact, it’s three times higher—triple—in the 12 hours before the next treatment after that 2-day gap.  In a keynote address at the Annual Dialysis Conference last February, Dr. Carl Kjellstrand, a nephrologist from the Netherlands, estimated that more than 10,000 dialysis deaths per year in the U.S.—10,500—could be attributed solely to what he calls the 2-day “killer gap.”  

Kathe LeBeau said, “If we get this wrong, patients pay with their lives.”  I would argue that they already have.

We don’t close ICU’s on Sundays.  We don’t give insulin to diabetics just three days per week.  We don’t use heart-lung machines three times per week.  It makes no physiological sense to replace a continuous body function with an intermittent therapy.  If any practice in U.S. nephrology requires medical justification, it should be short, three times per week dialysis treatments!

Perhaps you noticed that all of the patients who spoke today were getting home dialysis, or had a transplant.  At the Medical Education Institute, our mission is to help people with chronic disease learn to manage and improve their lives, and our goal is to create expert patients who can self-manage at a high level.  The best way to do that is to have more home dialysis.  So, it is vital to not threaten more frequent dialysis by rewarding clinics that don’t train and punishing the minority who do. 

You have an opportunity to improve dialysis patient care.  I hope you’ll take it.

To adapt a phrase from London's subway - Mend the Gap.

The 2 day "killer gap" underlies the entire proposed rule - the payment is based on 13 payments a month, so it was an apt topic to bring up but more important than bringing these points to Medicare's attention was bringing these points to the renal community's attention. I'm not sure CMS's reimbursement is the barrier to every other day dialysis, so much as it is dialysis providers that have shown no appetite to challenge the status quo. (note that this is a world wide phenomenon. Every other day incenter dialysis is not offered anywhere in Europe or Oz either, AFAIK).

The Town Hall was a unique opportunity to talk to the whole renal community - Schatell made the most of it. Mend the Gap.

Berkowitz comments to the CMS Town Hall meeting on ESRD Prospective Payment System Proposed Rule

By Rich Berkowitz

I was so very glad I was chosen to be a speaker by CMS for the Town Hall Meeting.  I'm sure everybody else who asked to speak had comments just as important as ours, and I'm sorry not everybody had a chance to speak.

But I want to remind all that your written comments will be just as important as ours were today.  In fact, more important since ours were not to be seen as testimony, but just remarks.  We, too, have to send in our written comments.  So let's please get serious in the coming days before November 15th.

Here are my remarks:

I’m Rich Berkowitz, the founder of NxStageUsers, the largest independent group of dialysis patients using the NxStage home hemo machine.  I’m also on the NxStage User Advisory Panel.

Dialysis can be said to be akin to the storyline of The Lord of the Rings – at every turn lurks potential danger.  Unless you’ve experienced it, you have no real idea, and numbers alone don’t tell the story.

I’ve been on dialysis since February, 2003.  The first three years I dialyzed in-center and since then at home.  I’ve experienced four modalities: in-center conventional and nocturnal, and home short daily and nocturnal.  Home dialysis has saved my life.  For many, in-center is an increasingly debilitating experience, and I can be proof that conventional dialysis is certainly not “adequate”.  At least it wasn’t for me.  Even though my labs were always within acceptable range I suffered a heart attack driving home from one of my dialysis treatments.  The symptoms began over the long weekend.

When I started home dialysis, I went through an intensive period of training.  There were initial problems once at home that would have probably been avoided if I had another week’s worth of training.  In fact, I ended up hospitalized unnecessarily.  I later learned my training was limited to three weeks because the dialysis manager was concerned about how much it was costing her department.  That’s what happened when $20 was reimbursed for the training session when a nurse gets paid about $50 per hour.  So my concern is not that training is to be included in the bundle, but that the allotted dollars have been insufficient in the first place.

One reason mentioned for the first four month 47.3% adjuster is the cost of initial home training.  But the fact is approximately 85% initially start with in-center hemodialysis.  Therefore, those funds will not be available for home training use for most patients.  For that reason I would first like to see training remain outside the bundle and increased in its reimbursement, or alternatively have an accommodation made for more realistic training costs to be covered inside the bundle, such as an additional adjuster.  Although I’m an existing home dialyzor, I’m concerned about new home patients getting the necessary training to successfully transfer home.  It can also affect current dialyzors if their center has less incentive to continue its program.

Another great concern for home dialyzors – actually all dialyzors - is the inclusion of all dialysis meds.  I don’t think I have to tell you how difficult or expensive it is for many dialysis patients to get Medigap insurance.  Including all meds affects and discriminates against those who already have Part “D”.  Also, patients, especially home dialyzors, may pay more out-of-pocket because they will be responsible for the 20% Medicare doesn’t cover, whether or not they use or need the meds.  Another concern is whether providers will be able or willing to make available the most effective meds, which tend to be newer, and non-formulary.  Regarding labs, the proposal is too broad in that it doesn’t define ESRD related labs, but allows all tests ordered by the MCP physician to be included in the bundle.

I want to speak briefly on the Quality Incentive Program.  Adequate is such an ambiguous term.  It has a different meaning to each person. To me, adequate dialysis connotes to be just enough.  But just enough for what?  Just enough to stay alive?  Instead of adequate, the emphasis should be to optimize treatments.  Make the treatments to allow people to lead more healthful and purposeful lives.  Keeping them alive just to have another treatment is simply not enough.

Longer and more frequent treatments have proven to be more effective in optimizing outcomes.  Therefore, whatever measure is chosen for the QIP, it needs to be applicable and adjusted for the treatment regimen.  Home dialysis should not be inadvertently disincentivized – it is the superior treatment.  In the future, I would recommend tracking, iron management, bone mineral metabolism, phosphorus and vascular access.  Please consider hospitalizations, fluid overload, cardiovascular health, and overall survivability.  Please allow the dialyzor’s quality of life to be the best it can.  Thank you.

Recording of CMS PPS Proposed Rule Town Hall available for four days

By Bill Peckham

I found the Town Hall very informative. There were 24 speakers (PDF link) in addition to brief opening remarks from a couple CMS officials. CMS will make audio of the town hall available for just four days:

A recorded audio version of the Town Hall meeting will also be available Monday, October 26, 2009 beginning at 9:00 AM through Thursday, October 29, 2009 at 11:59 PM (Eastern Daylight Time) by dialing 1-800-642-1687, conference ID number 33239635.

Audio from the Open Door Forum is going to be available for a month. The Town Hall was more informative, its audio should be available at least until the proposed rule comment period closes.

My comments to the CMS Town Hall meeting on ESRD Prospective Payment System Proposed Rule

By Bill Peckham

I was given the opportunity to present oral comments to the CMS Town Hall meeting today. Speakers (PDF link) were limited to five minutes and many of hit us the same points. I hope to be able to post and/or link to some of the other remarks, here are mine (lightly edited):

Good morning everyone. I wish I was there with you but I am grateful for the accommodation that is allowing me to address you from my home. I'm Bill Peckham.

I have been a Medicare beneficiary due to ESRD since July 1988 when at age 24, I received a kidney from my oldest brother.

My underlying condition - FSGS - recurred in the transplant; I started dialysis in September 1990. After first dialyzing incenter I switched to home dialysis in September 2001. At home I enjoy a healthier, more frequent dose of dialysis. I currently dialyze five nights a week, over night, while I sleep.

I appreciate the opportunity to comment on the ESRD Prospective Payment System Proposed Rule. My comments are grounded in my belief that all Medicare beneficiaries with severe kidney disease should be able to live the lives they were meant to live but for their bum kidneys.

I know dialysis works. As I read through and thought about the proposed rule I asked myself:

Will this proposed rule increase or decrease the burden of dialysis on those who are ill?

After many hours of thought and deliberation, numerous conference calls and meetings … I don't know the answer. I don't know what all this rule will do but I have concerns. It is a big change! Including Part D medications?!? Really? As the kids say OMG.

I am a  payment policy hobbyist. This is my avocation, not my occupation. And this was a lot to evaluate. I am not entirely confident in my understanding of each of the many elements in this proposed rule. Some things I'm sure of; other things not so much.

First, the thing I am most sure of is the need for a separate home dialysis training payment modifier. Home dialysis training is not a routine service. It is expensive and right now access to home training is limited by insufficient training capacity.  

Including training in the base rate will further constrict access to home dialysis. Each training session should be paid at a level commensurate with the amount of one-on-one nursing time training requires.

Second I am confident  that this rule would be improved if covered labs were defined on a list rather than defined as those ordered by the MCP.

My nephrologist (who receives the Medicare Capitated Payment each month) should also be able to act as my primary care doctor. This came up this summer when I had a cancer diagnosis. I would not have wanted to endure the added appointments this proposed rule would have required. Non ESRD labs, drawn in the unit, should be paid outside of the ESRD bundle.

Having routine labs defined by a list would also better accommodate travel. Labs related to travel should be specifically excluded from the bundle – travel is important, please don't make it harder.
 
In general I think the complexity of the new rule will drive further dialysis provider consolidation, in an already consolidated industry. I think ownership diversity is healthy. I don't understand CMS's choice to define small volume facilities in terms of patient census rather than in terms of the size, and therefor the purchasing power, of the provider.

CMS should define “small volume” as units owned by providers who serve fewer than 1% of the total dialysis census. This would help slow the rush to oligopoly by giving truly small providers additional resources to operate under the new payment rule.

I doubt anyone can fully predict the impact of having dialysis units administer oral medications. It's too big a change. In the face of this uncertainty I urge Medicare to be constrained by prudence. Simplifying the rule would be prudent and also would help small providers cope with this far reaching change. Do not expand the bundle beyond what is required by MIPPA. Scale back the complexity.

This is an historic change that will guide and constrain the provision of dialysis for a generation. It's critical to get this right. I urge caution. Thank you.

Those five minutes went by fast.

I've long seen that dialysis provider size was a key factor in the move to expand the dialysis payment bundle. My belief in the value of nonprofit community based healthcare was in my mind as I spoke in favor of provider diversity. However, one of the speakers, Mrs. Diane Crafton, of Wheeling Renal Care, LLC, gave compelling remarks about the importance of supporting small providers that really spoke to the need to define "small provider" in terms of patients served or treatments delivered. A small provider should be a provider that delivers fewer than 1% of all dialysis treatments.

Dialysis & CKD Blog Report 10/22

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/19. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle has the blog report.
• Kamal Shah's Blog Kamal has trouble cannulating his arterial buttonhole.
• Kaply, Inc. Tracy blames steroid mania for her shopping spree, at least her sinusitis is better, wishes the pills were smaller; has a video supportive of Washington State's Referendum 71 to preserve the domestic partnership law.
• Toastiest Toastie's cat is doing well (as evidenced by video) and has a great vet,
• The Life of a 20-Something With Lupus Flo is almost done with her exams and looks forward to a break during Reading Week; writes a post while waiting for her HD machine to rinse.
• Becky Perry reviews Watch Over Me by Christa Parrish; shares some websites she like.
• On the Road to a Cure The Lupus Foundation of America (LFA) is participating in America’s Giving Challenge.  If you participate they might win $50,000.
• The Daily Dialysis Mark hopes to have his gall bladder removed, he has lost 25 lbs. so he can get on the transplant list, Bonni enjoys their time together.
• I Am. Are you? Update on week 2 of the Donate Life Illinois Campus Challenge; Bill Coon received a heart transplant yesterday.
• Transplant Alliance has advice on writing college admission essays.
• Chronic Chick Talk has a photo of her daughter's favorite shoes; a link to a place that helps to find alcohol detox centers for those who need them; a poem about life being like a roller coaster (It sure is!); some links for places to buy maternity clothes and baby items; a landscape photo for Wordless Wednesday post; suggests businesses change from analog phone systems to internet-based ones to save money.
• Bud's Ramblings Bud had sausage for breakfast instead of cereal and hopes to be able to go outside today.
• Precious Bodily Fluids extrapolates data from an AARP article on commonly prescribed drugs, seems most are prescribed for anxiety, depression, and pain.(What a sad comment on the state of our society.)
• Renal Fellow Network a brief differential diagnosis of hypouricemia, which can be broken down into two main categories: decreased uric acid synthesis, and decreased renal reabsorption of uric acid; how best to design RCTs for new transplant immunopressives; some guidelines for prescribing renal replacement therapy in the neuro ICU; results from last week's poll about strategies to prevent IV contrast nephropathies.
• Uremic Frost a study shows that eating two or more servings of fish a week may increase diabetes risk.(Just when you thought eating fish was good for you!)
  
• Renal tsar's blog a study shows a relationship between supported staff and better patient experiences; recommendations for better acute kidney injury care; a new PD specification is launched at a home dialysis conference that will help patients and units procure high quality and cost effective care.
• Neophron's Senescence recommends both the book Money Driven Medicine by Maggie Mahar, and the documentary based on her book.
• pkdmom2five shares her son's contest winning photograph.
• Dialysis and Me writes about the importance of being your own advocate when it comes to health care.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to two interviews: David Pogue Interviews Dr. Blumenthal, US Electronic Medical Records Czar; and Dr. Brad Berk, University of Rochester Medical Center CEO, discusses his spinal cord injury.
•  Lemonade and Kidneys Ruth will be making homemade marshmallows for a local food fair. (Yum! I wish I could sample some.)
• Chronicals of the PD Warrior is glad that Roman Polanski is finally going to be brought to justice.
• The inner game of PKD Coach Richie writes about the importance of optimism.
• Michael W. Newman notices that the tech trainee at his HD unit is setting up machines incorrectly and wonders how long it will take till corrective action is taken by the administration or corporation, or will a fatality have to occur first.
• DailyHemo - Home Dialysis Advocates New Videos: Nephron.org - Dr. Fadem Gets a Flu Shot; Pat Spurgeon Does Dialysis on the Road; Doctors Fund Raise for Kidney Benefit.
• Renal BizBlog General Electric unveiled a diagnostic ultrasound device called the Vscan, that looks like a cross between an iPod and a mobile phone.  (Dr. McCoy is smiling somewhere!)

Dialysis & CKD Blog Report 10/19

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/16. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill reports that Baxter corporation is venturing into home hemodialysis with a new system.
• Kamal Shah's Blog Kamal celebrates Diwali. the festival of lights, with lamps that symbolize light in a dark world.  He write about Diane Franks who he considers a light in the world. She is a UK citizen who is giving a living kidney donation to an unknown recipient. (A great act of kindness. May others be enlightened by her act.)
• Kaply, Inc. Tracy has a busy day, includes voting, dim sum, and an exploding microwave.
• Toastiest posts a photo of his cat with some lovely music to listen to; some humor at the expense of Wilford Brimley; a positive message from Toastie's dog, Herman.
• Becky Perry shares links to some websites she likes.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease 17 months post-transplant doctor visit report, Jeff is doing well overall although still has fluctuating BK Virus, still has his fistula and draws blood for labs from it, he will get the H1N1 vaccine and explains why.
• On the Road to a Cure has a description of the Lupus Foundation of America, Mid-South Chapter's  Walk for Lupus Now even held in Nashville.
• Really, I'm as Old as I Feel?  Rob's young daughter takes a spill down the stairs and gets a black eye, she's okay but it gave quite a scare.
• The Daily Dialysis Mark and Bonni settle in to the dialysis routine, Mark is feeling better, Bonni busies herself working on her business and playing Facebook games to fight the loneliness.
• I Am. Are you? shares two emotional journal entries from Bill Coon, a 20-year-old college student currently waiting for a heart transplant.
• The Ins and Outs of Dialysis has a great photo of John, a big cake, and four happy grandkids celebrating his 72nd birthday. (We wish you many, many more healthy, happy years.)
• Chronic Chick Talk loves her new clock that has a temperature gage; she is sick and tired of lupus and fighting with her daughter over homework; bought a compressor for her car's air conditioning from a company that sells auto parts online and ships by UPS; Music Monday video of Sheryl Crow singing "All I Wanna Do;" makes plans for her daughter's sixteenth birthday party.
  
• Dialyse This Cassie feels ambivalent about getting a transplant, also she catches a man staring at her catheter. (Sometimes people stare at my AV fistula, too.  I flex it at them and intimidate them with my hefty, well-sculpted arm muscle.)
• Bud's Ramblings At dialysis, Bud had his arm stuck in a new place and it's very sore.
• Renal Fellow Network  has a list of drugs which can result in hyperkalemia, characterized by mechanisms of action;  describes the Gordon Syndrome,  an unusual syndrome which causes hyperkalemia and metabolic acidosis (It's also called pseudohypoaldosteronism type II, which takes way too long to say and type!)
  
• Uremic Frost announces a community lecture he is giving about renal transplantation, Oct. 20, 7:30 pm in Manhasset, NY; a study from the UK suggests coronary angiogram screening does not accelerate the decline in renal function in patients with advanced CKD prior to renal transplantation; an Australian study reveals a link between alcohol intake and the risk for albuminuria.
• UKidney has a big written exam on CKD and wants everyone to pray that he does well. (We'll pray but you should study, too. Good luck!)
• Neophron's Senescence reports on the current football games and players.
• pkdmom2five became official members in their new church.
• Dialysis and Me has a link to the DSEN 2010 Freedom Cruise, wishes he could go and maybe will go next year.
• The Ballad of Billy The Kidney John reports that Australian scientists have developed an improvement in the solution in which donor hearts are transported – making a donor heart viable for up to 14 hours, as opposed to the current situation of 5 or so hours. They hope to apply it to other organs soon. (Great news! Those Aussies are always coming up with great things!)
• Michael W. Newman After getting no response from the ESRD network, Michael contacts his clinic's dialysis corporation to complain about dangerously low patient/staff ratios and finally sees some improvement.  (Way to go, Michael!)
• Jenna Franks Jenna, 2 1/2 years post-transplant, is now in Paris and enjoying her classes there.  Proud mom, Karol, is home, shares a photo and awaits Jenna's return at Christmas.
• Kidney Community Emergency Response American Regent and FDA notified healthcare professionals that anaphylactic-type reactions, including fatalities, have followed the parenteral administration of iron dextran injection. The Boxed Warning has been modified to recommend administering a test dose prior to the first therapeutic dose and observing for signs or symptoms of anaphylactic-type reactions during administration of Dexferrum.
• Libre Clothing has pictures from the NKF-Dayton Kidney Walk
• Team Teddy Bear The Walk for PKD gets some publicity on the CBS Early Show.

Baxter takes first steps towards home hemodialysis 510K

By Bill Peckham

On Thursday Baxter reported third quarter results and activity highlights including:

Filing an Investigational Device Exemption (IDE) with the U.S. Food and Drug Administration (FDA) to begin a clinical study to collect safety and effectiveness data required for a 510(k) application for a new home hemodialysis system.

A new home hemodialysis system. How exciting.

Dialysis & CKD Report 10/16

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/13. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill notes that severe cases of H1N1 are already straining ICU infrastructure causing the editors of JAMA worry about what is to come during the rest of the flu season, dialyzors may find themselves on the bad side of the triage process; Bill will be presenting at the Nephrology News & Issues' free webinar Can home dialysis survive in the bundled payment era? on Wednesday October 21, 3PM EDT: Go sign up to attend!; Bill live blogged the CMS Open Door Forum hoping that he (and the rest of us dialyzors) can get a better handle on the bundle; Joyce Jackson, the CEO of Northwest Kidney Centers, wins the 2009 Warren Featherstone Reid Award for Excellence in Healthcare.
• Kamal Shah's Blog Kamal discusses the pros and cons of telling white lies when it comes to work deadlines.
• Kaply, Inc. Steroids are making Tracy hungry all the time; likes lounging in her new flannel pajamas from Costco; did many things this week...and dialysis.
• Toastiest describes his dialysis experience, it has been difficult adjusting,  but they moved him to a different bed so he slept better this time on nocturnal HD.
• Birdman shares photos of his grandchildren.
• Becky Perry has some website links she likes; reviews Leaving Yesterday by Kathryn Cushman (who lived in the same town when they were children.); Psalm 42.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease adopts a new dog, photos of their dogs.
• Jack's Kidney Adventure six month post-transplant labs are very good, doctor wants him to start exercising,  he has a telangectasia in his gum.
• Life on dialysis ... and now life after my transplant! Holly has been busy this week doing radio interviews, she likes the Natalie Imbruglia song "Glorious" because she feels that she also has been "smiling on the inside" since her life is so much better with her kidney transplant.
• On the Road to a Cure BioVid Corp. -- a market research firm – is conducting a survey of people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.  There is a small stipend for participation.
• Really, I'm as Old as I Feel? Rob's appointment with his doctor goes well, but his insurance wouldn't pay for his flu vaccination so he didn't get one.
• I Am. Are you? updates on Week 1 of the Donate Illinois Campus Challenge; photos from a video shoot with Chicago Bears cornerback Charles Tillman whose daughter had a heart transplant.
• The Ins and Outs of Dialysis John's DaVita clinic offers respite care for the home HD caregivers so Gayle gets to go visit her 93-year old mother.  (All clinics should offer this service.  It would help avoid caregiver burnout and it's the right thing to do,)
• Chronic Chick Talk has a photo of dog, Mason; shares a link for an attorney service that helps domestic violence victims file the necessary paper work for restraining orders; her Friday Fill-in pst; is amazed at how computer touch screens are now found everywhere.
  
• Precious Bodily Fluids a case study involving a woman with an old type B aortic dissection, recurrent TIAs, a carotid bulb tumor, a bilateral pulmonary embolism, and a belief that anticoagulation is bad (Poor lady!); a study showing that nursing home patients do poorly on dialysis, both in terms of mortality and morbidity.
• Renal Fellow Network Revised diagnostic criteria for hepato-renal syndrome;  RFN readers were posed the question, Which RT modality would you choose for yourself if you had CKD5?  The poll results: Home Hemodialysis was vastly preferred over standard hemodialysis (No kidding?), while CCPD had an edge over CAPD.
• Uremic Frost has a link to the Renal Support Network's KidneyPublicPolicy101,  a forum dedicated to the CMS Proposed Rule for CKD / dialysis. Comments are due by November 16th. Please log on and contribute prior to this landmark ruling.(Your voice matters!)
• Renal tsar's blog reports on a document that sets out to  promote continuous quality improvement in primary care services.
• pkdmom2five has a quote about the origins of oak trees; the definition of hypocrite; the weather is great, looking forward to a baseball game, is being annoyed by stalkers.
• Dialysis and Me comments on the story about the first grader who was suspended from school for bringing his Boy Scout camping utensil to school; videoblogs about feeling down (We all have days like that.  Hang in there, tomorrow will be better.); reviews the Space Wolves Codex: Dark Angels vs. Space Wolves.
• Kidney Notes - Exploring the Intersection of Medicine and Technology The Electrolyte Composition of the Red Sea.
• Lemonade and Kidneys Ruth gets the "honest and scrappy" award and shares ten honest things about herself; her husband is out of town, hopes for quiet times and good karma.
• The inner game of PKD Help with keeping your emotions in positive motion.
• LightLizard's Lair had charlatans offer to cure his CKD5, he's glad he accepted his disease and went for traditional western medicine which he credits for saving his life.
• DailyHemo - Home Dialysis Advocates New Video: Machine Eases Fatigue, Long Waits; ESRD Proposed Bundling Rule Presentation; UBS Global Life Sciences Conference.
• Biologically Safe Water Filters a new  EPA rule gives airlines 24 months to comply with the new testing and disinfecting schedules for aircraft drinking water. Nephros DSU, point-of-use, filter can filter biological contaminants well beyond EPA drinking water requirements.
• Encompass Network Partners has an article on foot pain and diabetes.
• Renal BizBlog suggests that one way to address the CROWNWeb's problem of inability for smaller dialysis providers and clinics to batch submit data is to have one person enter the data for multiple clinics within a provider.

NKC CEO - Joyce Jackson - wins 2009 Warren Featherstone Reid Award for Excellence in Healthcare.

By Bill Peckham

The Northwest Kidney Centers tweeted the announcement that Joyce Jackson, NKC CEO has been selected by Washington State Governor Gregoire as the 2009 recipient of the Warren Featherstone Reid Award for Excellence in Healthcare:

In 1994, the Legislature honored Warren Featherstone Reid and his policy interests by creating the Warren Featherstone Reid Award in RCW 43.70.045 and RCW 43.70.047 to recognize cost-effective and quality health care services. The award is to be given annually to health care providers and facilities in Washington State who exhibit exceptional quality and value in the delivery of health services. When it created the award, the Legislature recognized the importance of ensuring that all Washington residents have access to affordable, quality health care.

It is deserved recognition for Jackson who has lead NKC to be a model for the industry.

CMS Open Door Forum on proposed rule to expand the dialysis payment bundle

By Bill Peckham

The CMS Open Door Forum should be starting any time, I'm on hold listening to music while I wait  for the next available operator. Live blogging will commence once I am connected to the call. The PowerPoint NephrOnline posted (PDF link) the call is going through this slide by slide.

12:41 The goal was for a model with the maximum explanatory power

12:46 Giving a history of the dialysis payment system (see slide 4)

12:47 (slide 4) we chose the per treatment (good choice)

12:50 (slide 5 - 8) This is being gone over very quickly - the base rate is meant to be 98% of what would have been paid if there wasn't a PPS.

12:53 (slide 9) Part D drugs related to ESRD are not to be paid after 2011 so if units choose to phase in the new rule payments will be increased by $14 to pay for medications previously covered under Part D

12:56 (slide 11) The case mix adjustments

12:58 (slide 12) The lowest cost group was identified as 45 - 59; new analysis for the new rule concluded female patients higher cost than males; low BMI is measure to identify malnutrition

1:00 (slide 13) The higher costs are believed to be related to stabilization need; administrative & labor costs; Initial home training (how many dialyzors train for home in the first four months?)

1:03 (slide 14) did not include race/ethnicity (good choice); did not include a payment variable for PD "We want to encourage home dialysis"

1:06 (slide 15) Pediatric payment choices

1:10 (slide 16) adjustments to bundle payment due to wage variations

1:13 (slide 17-21) deciding what facility level adjustments are needed other than geographic wage index. One adjustment for a low volume facility is in response to MIPPA requirement. Decided on 3,000 treatments/year (is this fewer than 3,000 Medicare primary treatments?) Considering a low volume adjustment of 10%  instead of 20%+

1:19 (slide 22-24) (calculating outlier payments is complicated)

1:22 (slide 25) assume 36% will choose to phase in (wouldn't this mean one LDO chooses to phase in or all non-LDOs choose to phase in?)

1:26 (slide 26-32) (the complexity of choosing to phase in might mean few providers take the option)

1:35 (slide 33) will be updating data with 2008 claims data, and in response to comments made to CMS

1:37 (slide 34-39) the quality incentive program is expected to evolve

First question is from Rich Berkowitz asking about including home training in the initial 4 month adjustment; response was that MIPPA required its inclusion. Dori Schatell follows up to echo concerns on including home training in the first four month adjuster. In response to a question it was emphasized that after January 1, 2011 CMS can not pay labs or pharmacies for services that are covered under the bundle so after 2011 all payments must be made to CMS.

I was able to ask a question - I don't think CMS's proposed bundle base rate of about $198 is enough. I'll need to post separately my thoughts on why.

646 participants were on the call.

CMS Open Door Forum today, DSEN plans to live blog

By Bill Peckham

Today I was asked over lunch, by a dialyzor I've know through the dialysis-support listserv for 13 years, what the bundle was all about and I didn't know where to start. The proposed rule to expand the dialysis payment bundle is beyond my ability to explain. The more I try to understand it, the more I find to understand, the less sure I am of what I know. Where's a dialyzor to turn?

Tomorrow (Thursday) CMS is holding an Open Door forum:

Special Open Door Forum [ODF]: End Stage Renal Disease [ESRD] Prospective Payment System [PPS] Proposed Rule Overview will be held on Thursday, October 15, 2009 from 3:30pm-5pmET. During this ODF, CMS staff will highlight the key features of the proposed ESRD PPS Proposed Rule including composition of the bundle and basis for the proposed unit of payment, data sources used in developing the system, proposed patient-level and facility-level case mix adjusters, proposed outlier policy and proposed market basket. This call is Conference Call Only. If you wish to participate dial 800-837-1935 Conference ID 26811397. Discussion materials will be available to download at http://www.cms.hhs.gov/ESRDPayment/

The discussion materials are a 41 slide PowerPoint which NephrOnline posted (PDF link).

I am planning on calling in and plan to live blog the call. Hopefully by the end I'll be able to explain what the bundle is all about.

How does the proposed expanded bundle effect home dialysis?

By Bill Peckham

Sign up for Nephrology News & Issues' webinar on Wednesday October 21, 3PM EDT -  Can home dialysis survive in the bundled payment era?: 

With dialysis payment reform approaching, some concerns have been raised in the renal community about how home therapies will be reimbursed. Will the proposed "bundled"payment provide enough financial incentive for dialysis providers to offer home therapies? This hour-long Webinar will examine the value of home vs. in-center therapy, how to set up and manage such programs, and how Medicare plans to compensate providers.

It's going to be an action packed hour and I'll be one of the people talking.

It's a new format from the webinars I've been a part of at Home Dialysis Central, this will be my first webinar panel. Mark Neumann, Executive Editor, Nephrology News & Issues will moderate essentially a panel of five: four people from industry and me. After you sign up to attend the webinar check out the E-Poll on the NN&I home page - the results are only surprising in that nearly 10% would choose incenter hemodialysis. I'll assume they were thinking of incenter nocturnal.

Is triage coming?

By Bill Peckham

RenalWEB links to four articles - three from JAMA (with introduction) and one overview from Reuters - reporting cases of severe complications from H1N1 illness. These severe cases are already straining ICU infrastructure causing the JAMA editors to worry as they look ahead:

Hospitals must develop explicit policies to equitably determine who will and will not receive life support should absolute scarcity occur. The controversy that erupted around triage decisions during Hurricane Katrina highlights the importance of advance planning and clear guidelines.10 Several groups have provided recommendations for allocating scarce therapies during the influenza pandemic.11-13 Any deaths from 2009 influenza A(H1N1) will be regrettable, but those that result from insufficient planning and inadequate preparation will be especially tragic.

This is another way of saying hospitals will need to impose triage guidelines.

I first wrote about dialyzors being on the wrong side of the pandemic triage framework in March of '08 (I was thinking of a different virus at the time: H5N1), Peter wrote about the potential triage threat with regard to H1N1 in August. Now as the pandemic is slowly unfolding instances of triage being used will increase. The most recent CDC FluView (for week 39) shows the trend - hospitalizations and deaths are increasing in advance of the normal flu season.

Dialysis units have not reported any problems related to the flu - the Kidney Community Emergency Response Coalition monthly calls have continued to emphasize preparedness (September minutes PDF link). Thus far the virus has been spreading in schools, there have been no reported breakouts in hospitals, clinics, businesses or hotels. There has not been a lot of adult to adult spread, which is great but with flu we can't say why. It could be that adults have some protection gained from previous bouts with flu or it could be something about the way the flu spreads. At this point we can say it is spreading more easily among young people but we don't know why and we don't know if that will continue.

Dialysis & CKD Blog Report 10/13

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/10. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Brian Steele-Sierk, who has Type 1 diabetes and CKD5, points out excellent lessons that CKD5 care could learn from the advances in diabetes care. (I think if the medical community stopped thinking of CKD5 as "End Stage Renal Disease" (ESRD) and realized that those of us with CKD5 don't have to be at the end of our lives if we have optimal dialysis then maybe things would be more likely to change.)
• Kamal Shah's Blog Kamal has a video of his going down the natural water slide at Chaparai; describes the difficulties involved in getting dialysis when he is away from home and how he managed when he skipped treatment on his recent vacation.
• Kaply, Inc. Tracy has done all her Christmas shopping except for her Grandma who is hard to shop for; Tracy's doctor want to treat her chronic sinusitis with steroids and antibiotics or surgery, Tracy expects the steroids to make her psychotic.
• Toastiest tried a new dessert at a Greek restaurant; links to a story about a 4-month old baby being denied health insurance; linked his blog to Facebook; posts an open letter to the Davita staff at his center whose poor planning causes scheduling problems resulting in their rushing Toastie at the end of his treatment.
• Stayin' alive Kathy finds wearing her prosthesis is a lot of work so she often doesn't wear it even as she realizes it is the key to more independent living, she is knitting many items for a charity bazaar.
• Hasten down the wire comments on the reauthorization of three sections of the Patriot Act by the Senate Judiciary Committee
•  Becky Perry posts some links she likes; does the best she can despite health and financial problems, finds that she enjoys and is good at home schooling; reviews Things Worth Remembering by Jackina Stark.
• Jack's Kidney Adventure Jack has a reunion with old friends, has a quick review of major blog moments.
• On the Road to a Cure Amanda Davenport continues her guest blogging about Hell's Kitchen.
• I Am. Are you? 20-year-old Columbia College student Bill Coon shares his thoughts as he waits for a heart transplant.
• Kevin’s Blog Kevin shares a letter written for his daughter's dedication ceremony in his church.
• Bud's Ramblings Bud had a tasty dinner and family visitors.
• Renal Fellow Network posts on dietary measures which have been shown to reduce the risk of nephrolithiasis (kidney stones); acid-base issues related to eating disorders; the electrolyte composition of the Red Sea.
• Uremic Frost An article concludes that physical inactivity leads to an increased mortality in CKD patients (Time to exercise, Everyone!); preferred medications for pain control in CKD.
• pkdmom2five writes a response to an anonymous letter writer.
• Dialysis and Me posts a photo of his workspace and some of the model soldiers he is working on.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a photo of a sign precluding healthcare practitioners from Minnesota, Vermont, or Massachusetts from eating the munchies at a pharmaceutical company exhibit; a med/peds hospitalist writes on resources for nephrology; medical students at the University of Medicine and Dentistry, New Jersey required to have an Apple iPhone or iPod touch (I guess smart phones make smart docs?); an updated the list of kidney diseases for patients.
• Michael W. Newman is very concerned that this weekend a technician trainee will be the only tech available at his HD unit. (I would be scared. too. Time to file a complaint with the Medicare Network again.)
• PKD World has a link to an article about why people choose to become live organ donors; links to PKD blogs.
• Kidney Community Emergency Response Unomedical Inc., a manufacturer of medical devices, today announced that it is conducting a voluntary recall of certain units of the single-patient use Manual Pulmonary Resuscitator (MPR).
• Libre Clothing has a photo of a happy dialyzor wearing Libre's women's oxford button-up shirt.
• NephrOnline Blogs CMS is likely to delay full implementation of CROWNWeb Project until March 2010 due to bugs in Version 1.2 of the program and complaints by small providers of the labor-intensive data delivery process.
• Team Teddy Bear photos from the 2009 Hudson Valley Walk for PKD.

Lessons to be learned from advances in Type 1 Diabetes Care.

By Brian Steele-Sierk

In the Early 1970's type 1 diabetes care and stage 5 chronic kidney disease (CKD5) care in the United States were very similar.  Both used infrequent therapies (1 insulin shot per day, 3X4 in center hemodialysis), monthly blood chemistry tests (indirectly, in the case of urine glucose sampling), and both carried an expectation of severe long term complications.  In the intervening decade, diabetes care and outcomes have changed and advanced rapidly, to the point where University of Washington Researcher Dr. Irl Hirsch can say "people diagnosed with Type 1 diabetes today will not have to deal with significant complications later in life."

The same can in no way be said about people today receiving a CKD5 diagnosis.  The vast majority will suffer from and die from complications arising from insufficient dialysis resulting in poor control of the disease.

I am a type 1 diabetic, as is my father, brother, and daughter.  My father and I are also CKD5 patients as a result of our diabetes.  He received a Simultaneous Kidney/Pancreas transplant in 1995, and  I am currently dialyzing with the NxStage System One at home, doing extended daily home hemodialysis.  I have seen firsthand the development in diabetes care from the early 80's to the present. I have also seen a lack of significant development in the care of CKD5 in the same time frame. I can't speak definitively as to the causes of the disparity in development, but I think there are some things that Dialysis can learn from Diabetes.

First, diabetes therapy has sought to more closely mimic the natural processes that it seeks to replicate.  Natural insulin is released at a low level constantly, and at greater quantities (a bolus) when triggered by ingestion of carbohydrates.  Insulin therapy has gone from one shot a day to multiple shots of differing insulin that have different medication profiles, to wearable pumps that constantly infuse insulin.  The huge majority of dialyzors are still stuck on a 3x4 incenter hemodialysis regime that is as far from natural kidney function as you can get while not being dead. Extended home hemodialysis is much closer to natural function than 3x4 incenter, but has  a miniscule adoption rate, and is still viewed as experimental by many in the field.

Second, the external feedback loop in diabetes therapy has gotten much smaller.  Glucose testing has gone from monthly urine collection, to daily urine collection, to daily strip testing, to daily digital monitoring, to constant glucose monitoring.

The testing in CKD5 care is still on a monthly basis. This is in spite of the fact that potassium, sodium and urea levels vary widely based on diet activity, dialysis prescription, etc. Care will improve when we as dialyzors can know that we are hypo- or hyper-kalemic instead of just guessing or suspecting that we are.

Third, the expectation of caregivers must change. When my daughter was diagnosed with Type 1 diabetes in 2008, the expectation was there that she would test 5-6 times a day, and that she would prepare to get a pump, and maybe a constant glucose monitor.  When I was in the hospital for kidney failure, I was told that I would dialyze 3 days a week, even though my nephrologist and technicians giving me dialysis were aware of home hemodialysis.  It is true that many type 1 diabetics are non compliant patients, and do not seek the top level of care available to them. However, the top level of care is seen as the goal, and non compliance, while possibly the norm, is labeled as such. In treating severe kidney disease, those that seek daily, nocturnal home dialysis are seen as outliers, and people getting 3x4 hemo in center, which we know is insufficient, are seen as the norm.

Here's to hoping that technology can make this discussion obsolete.  Until then we need to keep pushing for better therapy, tighter feedback, and higher expectations of patients and care.

Dialysis & CKD Blog Report 10/10

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/7. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill notices that most of the comments on the new bundling rules seem to revolve around the oral drug inclusion.  He points out that there are many other important concerns that need to be asked and addressed.
• Kamal Shah's Blog Kamal continues the description of his vacation, with photos, including a very exciting ride down a natural water slide.
• Kaply, Inc. Tracy is feeling unsettled; discusses her grandmother's stomach surgery with her brother.
• Toastiest has photos of his bruised fistula arm, also his dog and cat; a video of Rachel Maddow commenting on Obama's Nobel Peace Prize.
• The Life of a 20-Something With Lupus reports on how her school tests are going; will be working on Canadian Thanksgiving; writes about people on the bus who irritate her.
• Becky Perry reviews Measure of Mercy by Lauraine Snelling; some web links she likes; her Friday list of things that make her happy; a link to a free scrapbooking search engine.
• On the Road to a Cure highlights a helpful book available in their store: Coping with Lupus by Dr. Robert H. Phillips.
• Renal Fellow Network writes about different and more accurate equation-based calculations used to determine total body water; results of a Poll of the Week regarding managing the potassium bath in a patient with hyperkalemia; an explanation of T-regs and the effect of the currently used immunosuppresant medications on T-reg function.  
• Uremic Frost Fosrenol beat Renagel in a recent study.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) adds a FaceBook link to his blog.
• pkdmom2five shares family photos from a road trip.
• Dialysis and Me video blogs about grocery shopping; links to Keith Olbermann's excellent commentary on healthcare reform.
• Kidney Notes - Exploring the Intersection of Medicine and Technology Eight ways physicians can use Evernote.
• Lemonade and Kidneys Ruth's auction event went well, she had lots of friends help, and is exhausted from it all.
• The Ballad of Billy The Kidney John is off on a short vacation to city of Adelaide in South Australia and he reflects on the very different (to the rest of Australia) system of organ donation there.
• Living with PKD Heather goes to the ER after three days of vomiting, turned out to be the stomach flu, doctor gave her Zofran (an anti-nausea drug) that helped her.
• The inner game of PKD Richie explores the idea of having a teleconference on PKD issues, contact him with your thoughts on this.
• Nathan's PKD  Nathan is sick with vomiting and diarrhea, gets tested for CMV; the CMV test is negative and after lots of fluid and some Immodium he is feeling much better.
• My New (transplanted) Kidney Al's latest clinic visit noted high blood pressure and raised creatinine, has some medication changes and must monitor his BP at home, otherwise he's pretty well.
• Michael W. Newman Michael is concerned about the quality of care at his HD unit since as a cost-cutting measure they have only one technician available for nine patients. (That certainly sounds inadequate. A recent article on best practices recommended a ratio of one technician to three or four patients. The Medicare rules for coverage require that a facility must have staffing sufficient so that quality care is provided to dialysis patients that is consistent with the patient plan of care and professional practice standards.  I don't think they set a minimum ratio but often state laws do. I suggest you find out what standards exist in Florida law where  you are and check with your region's ESRD network to file a complaint if you feel your care is compromised by inadequate staffing. Florida is Network 7. Here is their toll-free phone number: 800-826-3773 or local 813-383-1530, and here is a link to a Medicare publication on how to file a complaint regarding a dialysis center.)
•  PKD World has a link to details of 17 current drug / non-drug trials for PKD; an article about PKD by Dennis Byrne from the Chicago Tribune; a Facebook link for people in the UK with polycystic kidney disease (PKD), their friends and families; a sad story from India about a woman whose husband dumped her after selling her kidney.
• DailyHemo - Home Dialysis Advocates New Videos: Wearable Nano Dialysis.
• Libre Clothing has a link to a feature article about their company in the October issue of Renal Business Today.
• KIDNEYBLOG Stephen Fadem, MD, explains the importance of getting your flu shot and posts a video of him getting one.

MIRIAM'S WEBSURFING FIND: If you don't get the Renal Support Network's (RSN) newsletter, Live & Give, you should.  It's a wonderful resource for important information and upbeat features to raise your spirits.  In their Spring/ Summer 2009 issue they had a moving article written by photojournalist, John F. Martin, about his kidney transplant surgery where his father was the donor.  He is still going strong nine years after his transplant.

John also has a super website called In focus: A photojournalist chronicles his journey through kidney failure where he tells his whole story both in text and photographs.

The chapters of this Web site chronicle my journey through the kidney transplant process, from early discussions with my doctor, to dialysis and ultimately to the surgery on March 31, 2000.

My goals with this site are to help patients and families better understand what may be ahead for them on the kidney failure road and to demystify the transplant process.

It is an excellent site, well done, and very moving, as well as informative and artistic.  Check it out!

Oral drugs focus of comments to CMS but many other areas of the proposed dialysis payment rule deserve scrutiny

By Bill Peckham

CMS is posting comments to the proposed rule to expand the dialysis payment bundle. As of Thursday night there have been about 52 comments. The majority of the comments - about 40 of the 52 - are exclusively concerned with including oral medications in the expanded payment and of these all come down against the idea. I agree that including oral medications was the most surprising part of the proposed rule and their inclusion is hugely problematic, however, it is not the only problem.

So far commenters have not mentioned labs. CMS intends for all labs ordered by the patient's nephrologist (defined as the doc that receives the monthly capitated physician payment: the MCP physician) to be covered under the bundle. This creates a number of problems because people have labs unrelated to dialysis done through the dialysis unit. Under this proposed rule patients will need to go outside their nephrologist's care to have second blood draws for routine coumadin tests, blood tests related to transplant, blood tests related to treatment for cancer, etc.. Second blood draws are always a bad idea for people on dialysis. We need to preserve our veins for future fistulas so it's best practice to have the blood drawn during treatment to the extent possible, the proposed rule will prevent this best practice.

Another related way this rule will prevent best medical practices is by preventing lab testing outside of the dialysis center. Under the proposed rule if I show up at an appointment with my MCP physician with a symptom that requires a blood test, I will have to see a second doctor to have the test paid for by Medicare. That could result in a dangerous delay in care. That is not a best practice. This proposed rule will likely prevent my nephrologist from acting as my primary care physician. That is a big change to the way I manage my healthcare and I don't think it is a change for the best, it will add cost and complexity to my care.

Travel. Patient travel must be defended against this proposed rule. When I travel and need to dialyze incenter the unit I am traveling to, almost always requires lab tests that would not otherwise be needed. Who is suppose to pay for these? That's not all. My travel will cost my home unit money even if they do not pay for the added lab testing. My home unit will not receive some of the reimbursement for things they provide monthly/quarterly/yearly - fractional payments for these periodic services are in the new bundled  payment for each treatment. The unit I visit will get the fractional payments due my home unit. I don't think it is my interest, for my travel, to cost my dialysis provider money.

On the other side of equation what will happen when I get to the unit at my destination? Will I get all of my medications? What happens if I don't get my epo? This sometimes happens today when the unit can bill separately for the epo they administer. Today if I don't get my epo, they don't get paid. What happens under the new bundle? What recourse do I have if my epo is withheld during a week long visit away from my home unit? Travel shouldn't require that I compromise the quality of my dialysis.

I understand that I am free to comment and I will, but if the comments so far reflect, broadly speaking, the thinking of the dialysis community then a lot is being missed. Even more than I hit on here ... pediatrics, the small facilities definition, increased patient copays, access to home dialysis, and more. The Kidney Public Policy 101 message board created by the Renal Support Network is a great resource (it's not just for patients but patients should feel particularly welcome). Everyone connected with dialysis should be checking out and using the forum to sort through this complex legislation that will change how dialysis is provided in the US; most particularly people with CKD should involve themselves in this historic process.

Changing how oral drugs are reimbursed is a big deal but this proposed rule change is full of big deals. It all deserves comment.

Dialysis & CKD Blog Report 10/7

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 10/4. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Looking at recent data from the NIH, Bill notes seasonal patterns in people transitioning to needing either dialysis or transplant and wonders why that is; Bill announces  a Renal Support Network (RSN) Patient Lifestyle Meeting (PLM) that has a great program planned, to be held on October 17 in Seattle. Registration is free and can be done online (PDF file); Bill agrees with suggestions for patient empowerment discussed in The Atlantic's article  Power to the Patients and contends that offering financial incentives will go a long way to  improving patient performance and outcomes; Bill comments on a survey that showed that transplant surgeons disapproved of cash payments to organ donors but would consider insurance premium payments acceptable; Bill was impressed and moved by Keith Olbermann's commentary on healthcare reform and reflects on how different the values of the current Senate are from the one in 1972 that passed the dialysis entitlement.
• Kamal Shah's Blog Kamal shares details and photos from his trip to Vizag and Araku.
• Kaply, Inc. Tracy got her new Terry Pratchett book and has put everything on hold while she reads it.
• Toastiest Toastie's dog, Herman, is developing tolerance for other dogs; is concerned about speeding buses; reviews his interests over the last five years.
• Hasten down the wire Michael critiques Dan Gilmor's new rules for journalism.
• Becky Perry shares some website links she likes; reviews Extraordinary by John Bevere; struggles with the difficulties CKD has brought to her life and finds hope and strength in her faith despite it all.
• Life on dialysis ... and now life after my transplant! Holly's brother had a serious bicycle accident and surgery but he's doing better now; announces a star-studded fundraiser for Live Life Then Give Life to honor her friend, Jess, that will take place on the evening of October 16th in London; Holly gets another award.
• On the Road to a Cure reports that a national health care consulting firm issued recommendations on ways to overcome the barriers that have obstructed lupus drug development; Lupus Foundation of America's Work Disability / SSDI / Health Insurance Webchat will be on October 14, at 3 p.m. Eastern Time, with guest expert. Sheri Abrams.
• Really, I'm as Old as I Feel? has a cute photo of his daughter, Abby.
• I Am. Are you? The Donate Life Illinois Campus Challenge begins today, has links to participating colleges; Julie shares the latest chapter from the Illinois Donor Diaries about her late husband, who was a transplant recipient. 
• Kevin’s Blog Kevin describes his excitement with the new Bible class he is taking.
• Life on Dialysis Saamir reflects on what he has learned in his two years of blogging; shares photos and describes a trip to an unusual fort.
• Dialysis Postings couldn't get to dialysis because of the flooding in Manila, stresses the importance of being prepared for emergencies.
• Chronic Chick Talk has a music video of I love Lucy, Babalu; her auto insurance premium goes up so she's shopping for a less expensive company; cold weather makes it hard for her to get out of bed; doesn't like looking in the mirror because of weight changes; got  her flu shot but is not going to get the H1N1 vaccine.
• Bud's Ramblings has more photos from the family cookout
• Precious Bodily Fluids has a link to a good online resource for evaluating proteinuria in pregnancy.
• Renal Fellow Network A recent study provides evidence that Cystatin C, a cysteine protease inhibitor, does a better job of predicting mortality than creatinine; notes the impact of the work of the current American Nobel Prize in Medicine winners on renal carcinoma; discusses a review article entitled "Can we personalize treatment for kidney diseases?"that explores the application of genomic and molecular data to better target the delivery of health care, facilitate the discovery and clinical testing of new products, and help determine a person's predisposition to a particular disease or condition
• Uremic Frost notes the controversy over the flu vaccines this season and that Fresenius has goals  to  offer to vaccinate 100 percent of its patients and health care workers.
• Renal tsar's blog clarifies a policy regarding the pneumococcal vaccine for people diagnosed with CKD.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish)Alejandro shares a letter from a brave and determined dialyzor in Peru who got a scholarship to study in Europe and is going to go even though affording dialysis while he is there will be a tremendous financial challenge.
• pkdmom2five shares Nicholas Kristof's NY Times editorial about how sometimes donating a kidney to a relative can end in losing health insurance; a message to abusive pastors.
• Dialysis and Me has an update and pictures of his true scale space marine project; shares a link to a blog he finds inspirational; decides he is going to get a job and videoblog's his day's activities turning in job applications. (I hope the Game Boy store calls, you'd be perfect for that!)
• Kidney Notes - Exploring the Intersection of Medicine and Technology HealthGrades makes it difficult for physicians to edit their info; a New York Health Department study shows how blended drinks from coffee chains foster calorie overload. (I had no idea that  a large Dunkin’ Donuts Vanilla Bean Coolatta (32 oz) would set you back 860 calories!  Scary!)
• Mid-life ramblings Dianne shares a religious video; is home after NxStage home HD training, it was hard at first but she is now feeling more confident, got support from NxStageUsers Forum, still struggling financially, but feels blessed, nonetheless.
• The inner game of PKD Exploring how you characterize yourself can lead to new insights.
• Nathan's PKD Nathan has been sick for a week and was tested for CMV virus, results expected Friday.
• I need a kidney Jason gets a permacath (Hickman catheter) for dialysis access and treatment is imminent, he wonders about showering with the catheter. (Take a look at CoverCath for help with the showering problem.)
• Jenna Franks Jenna and her Mom are staying near the Eiffel Tower and having a great time in Paris, has a link to photos.
• PKD World reprints Nicholas Kristof's NY Times article "Dad's Life?  Or Yours?; reports on new and upcoming treatments for PKD.
• Biologically Safe Water Filters   Using ultrapure water, will allow dialysis clinics to lower their cost per treatment by saving on EPO needs.
• Encompass Network Partners has an article on peripheral arterial disease (PAD) and limb loss.
• Kidney Community Emergency Response  Philips Corp. announced that it is voluntarily recalling approximately 5,400 HeartStart FR2+ automated external defibrillators (AEDs). This recall is being conducted due to the possibility of a memory chip failure that may render the device inoperable.
• NephrOnline Blogs Mark Neumann reports that the National Renal Administrators Association (NRAA) conference starting this week will be focused on the issues and problems engendered by the new bundling proposal.
• Renal BizBlog has a link to an extensive interview session with Dr. Anthony Fauci, who is director of the National Institute of Allergy and Infectious Diseases. In short, Fauci  is the government's point man for tracking H1N1 and finding the answers in combating it.
• Kim Hoben's Blog Kim walks and raises $1000 in the Kidney Walk, while she appreciate heartwarming stories about transplants she feels that if people really knew how awful in-center dialysis is they would be more disposed to signing up for organ donation.

1972, when we were unified against death

By Bill Peckham

Jennifer Nix has an article up on Fire Dog Lake that takes from her Salon article, highlighting the political change between 1972 and now. Nix points out that the dialysis entitlement passed with bipartisan support and that wouldn't happen in today's world. I was thinking about Nix's article while watching Keith Olbermann's special comment (transcript).

Olbermann took the whole hour tonight for a special comment on Healthcare Reform; it was as powerful and compelling as anything on TV. I heard in his voice the echo of my own experience being my Mom's care partner last year. Olbermann asked, How can we not be unified against death? and that's when I thought of the 1972 Congress.

In 1972 the Congress voted against death when they passed the dialysis entitlement. They voted to fight death, to sustain the lives of people not based on their ability to pay but rather because it was the right thing to do. Congress did that, Democrats and Republicans. Today politics is trumping the human suffering of the under and uninsured. We should be doing a much better job.

Transplant surgeons do not support cash payments for organ donation

By Bill Peckham

Nephrology Times reports that a survey of transplant surgeons shows that they are mostly against cash payments to donors or their families to encourage deceased or living organ donation, however, there is a large gray area. The survey was conducted by the American Society of Transplant Surgeons towards the end of last year:

Most of the respondents were surgeons, practiced in the United States, had less than 15 years of experience in transplantation, and had a primary focus on abdominal organs.

In terms of government-regulated strategies to increase living organ donation, 76.8% of respondents supported payment for lost wages, 72.0% payment of health insurance premiums, and 64.0% an income tax credit.

Payment of life insurance premiums was favored by a slight majority-55.5%-and a contribution to a charity of the donor's choice by a slight minority-44.5%. Cash payment to the donor received the least support-20.1%, with 61.5% of respondents opposed to such an incentive.

Like all these proposals there would be a lot to work out in the details - saying you'll pay insurance premiums can mean a lot of things. 

What level of insurance would you be prepared to fund? For how long? Often the solution would be to provide vouchers for people to use towards an insurance policy they select but it isn't clear to me why this is acceptable if pure cash payments are not. I think accepting one (pay for insurance) but not the other (pay cash) shows transplant surgeons are conflicted.

The survey respondents are acknowledging that cash payments might not feel good in practice; that they can imagine not approving of the decisions donors are making. But what to make of those that said yes to insurance but no to cash? Is the appeal that insurance would obscure bad decision making? The thing about altruistic donation is that we (society) approve of the decision. Are we ready to support living organ donation when we think the donor has made the wrong choice? Transplant surgeons aren't ready.

Patient empowerment to achieve optimal chronic disease outcomes

By Bill Peckham

Clayton M. Christensen and Jason Hwang have an article in the Atlantic suggesting one way to improve health outcomes would be by empowering patients. Power to the Patients suggests three ways to do this: provide patients access to their health records; physician participation in online communities e.g. discussion boards; and rating systems. Christensen and Hwang use the experience of people dealing with diabetes to illustrate the advantages of empowerment:

Insulin-dependent diabetics, for example, quickly learn how to manage their blood glucose levels at home by matching their insulin dosage to changes in their diet and physical activity. Many diabetics have also joined online communities to share information and advice, sometimes viewing each other as more trusted advisors than their own doctors. Diabetics who take their health in hand in this way find that the cost of care decreases dramatically, while the quality increases: it’s far more effective than relying on experts whom they may see only every few months.

People on dialysis experience the same dynamic (it's often after their own or a loved one's online research that people seek out more frequent home hemodialysis).

It's really in managing chronic illness that patient empowerment becomes important. Christensen and Hwang don't make the point directly but it's the growth of chronic illnesses that makes empowerment an important, yet little discussed, strategy to improve healthcare. The person with the chronic illness has far more control over their clinical outcomes then their physician. Christensen and Hwang focus on the power of information per se to improve clinical outcomes, the assumption is that if you know what is best you'll make good choices.

Unfortunately human nature being what it is that doesn't always work, if it did no one would smoke cigarettes. Information alone does not reliably change an adult's behavior. Cash. Cash changes an adult's behavior. Achieved your clinical goals? You get $200 off your quarterly Medicare premiums. For those on dialysis it may be managing phosphorus or keeping fluid gains down between treatments. Health care reform should direct financial incentives towards those with the most control over clinical outcomes, the patients.

Pay less for performance. If you perform, you pay less. We'll know patients are empowered when they are the target of financial incentives.

Seattle area CKD meeting October 17 - register now - it's FREE

By Bill Peckham

We're having a meeting here in Seattle on October 17 (PDF file). This is a Renal Support Network (RSN) Patient Lifestyle Meeting (PLM):

For the past several years, RSN has hosted free patient lifestyle meetings across United States, attended by people with chronic kidney disease (CKD) and their family members.

At these meetings, healthcare professionals and renal patients—on dialysis or with a kidney transplant—speak on life-enhancement and illness-related issues relevant to living a fulfilling life despite renal disease.

Any illness—and particularly CKD—is too demanding when you don’t have hope. If people with CKD do not believe they have a future, then the demands placed upon them by dialysis or by the immunosuppressant regimen will prove overwhelming. The goal of the patient lifestyle meeting series is to let patients know that their kidney problems are just that... problems that can be overcome with hope, an eye toward the future, a working knowledge of their disease, and a touch of common sense.

Patients are treated to a renal-friendly lunch or brunch and refreshments, and raffle prizes will be given away throughout the day. During the scheduled breaks, attendees are encouraged to visit information stations located throughout the venue where they can speak with experts on topics such as cooking renal-friendly foods, making traveling easier, re-entering the workforce, taking charge of one’s own health, and honing one’s skills as a caregiver.

Space is limited so you need to preregister to attend. Go online to preregister or print, fill out and fax the form (click image for larger version) to (818) 244-9540.

The agenda features Dr. Chris Blagg, emeritus director of the Northwest Kidney Centers who will speak about the journey chronic kidney disease has made from the first dialysis treatment nearly 50 years ago in Seattle through the challenges and opportunities of today. Dr. Blagg presents the history of CKD to conferences throughout the world and has been recognized for promoting home dialysis, as well as for developing public policy for renal disease treatment and kidney transplantation.

As always the agenda is subject to change:

Seattle Patient Lifestyle Meeting
Agenda

• 10:00       Registration, Brunch, Visit the Exhibits

• 11:00       Introduction, RSN Overview       
  
  • Sharon Pahlka, CLC, kidney patient
  • Bill Peckham, kidney patient dialyzor and blogger

• 11:15       History of CKD and Seattle 
  • Chris Blagg, MD

• 12:15       Home Dialysis:  There’s no Place Like Home
  • Sandra Glenn, RN, BA, CNN

• 12:45       Make Yourself a Perfect 10
  • Sharon Pahlka, CLC, kidney patient

• 1:30        Break, Raffle, Visit with Exhibitors

• 1:45        Importance of Blood Pressure
  • Leanna B. Tyshler, MD

• 2:30        Self Care – Cannulation
  • Lynda Ball, MSN, RN, CNN

• 3:00        The Transplant Experience
  • George Murray

• 3:30        Latest Issues in Health Care Reform
  
  • Bill Peckham, DSEN

• 3:45          Raffle, Evaluations, Adjourn

It will be a fun and informative meeting, be sure to REGISTER BY OCTOBER 9TH!

You can bet we'd love to have your volunteer help if you're interested in staffing registration or other day of event jobs. On your registration form indicate your willingness to volunteer or drop me an email/write a comment. I hope to see you there.

The seasonal incidence of CKD

By Bill Peckham

RenalWEB links to a National Institutes of Health press release announcing that they are providing more current incidence (transitioning into) and prevalence (already has) data about people treating stage 5 chronic kidney disease (CKD5):

Previously, incidence and prevalence data had been made available only through yearly updates of the USRDS Annual Data Report (www.usrds.org/adr.htm). Because the report includes detailed data from multiple sources, reporting lagged by about 18 months while data were merged and verified. For example, the 2009 report, which became available this month, has complete data only through 2007.

Now we can see the preliminary data for 2008, broken down by quarters.

I was interested to see this graph showing incidence by quarter. Two things struck me. First, the per year/ incident numbers have been flat over the last three years - 2006/111,008; 2007/111,000; 2008/110,766, which is very good news. Second, there appears to be a clear and consistent seasonality to people transitioning to needing either dialysis or transplant. 

The seasonality of CKD is consistent - about 10% more people transitioning into CKD5 in the winter vs the summer - Quarter 1 vs. Quarter 3. I can't think of an obvious explanation for this and searching Google came up empty on the specific question of CKD. There are papers noting the seasonality of other diseases (e.g. myocardial infarction) and of mortality generally but it isn't clear why there is a seasonality to developing severe kidney disease.