Every Other Day Dialysis Petition

March is National Kidney Month! It’s a good time to think about dialysis–and how sad it is that the U.S. lags so far behind the rest of the industrialized world. 20 million Americans have chronic kidney disease (CKD), and 20 million more are at risk. About 375,000 require dialysis–of which 92% do conventional hemodialysis (CHD): 3 treatments/week of 3-4 hours. This is not enough dialysis for most to live healthy and purposeful lives. We want Medicare and the Congressional Kidney Caucus to support better treatment. Won’t you please sign our petition to show your support?

1. Please take a minute and go to http://www.petitiononline.com/eodD0903/petition.html
2. Please forward this message to everybody in your address book.
3. Please post this message to all of your social networking friends.
4. Please post this message to all of the internet forums and groups to which you belong.

The U.S has the worst dialysis outcomes of any industrialized nation. Supporting every other day in-center treatments will allow those managing their illness with conventional hemodialysis to avoid the ‘long weekend’ with no treatment—which many studies have shown triples the risk of sudden death from a heart attack. Even this won’t allow the U.S. to catch up; that won’t happen until longer and more frequent treatments are made more widely available. But it’s a start! Please give this vital change your support!

Hi y’all,

Just to clarify, this petition is to improve IN-CENTER care for the folks who dialyze only 3x/week. We want to raise the floor, and increase the standard routine to every other day to help get rid of the 2-day “killer gap.” Nearly 600 people have signed the petition today. Have you?. If you’ve signed it, have you forwarded it to others? There are few easier ways to make a difference than to add your name to a growing list of folks who want to make things better for people on dialysis. Please help.

Canadians may sign this made in the United States petition. The outcome of this petition does have influence on the deliverance of dialysis here in Canada. From the beginning of the introduction of three times a week, four hours a day (3X4) by the 1972 United States Congress dialysis patients here in Canada have been subjected to the very same routine of the so-called “adequate dialysis”. Mountains of evidence from decades of pilot projects and studies from around the world have proven beyond a doubt that, 3 times a week 4 hours (and less with the two day gap ) dialysis sessions are not only inadequate but actually violent physiologically on dialysis patients. Despite all the efforts and technological advancements within the medical community, the trend continues, the most common modalities used for treating kidney failure leave the patient in the state of , well, kidney failure.

Hi Folks

Signed in. How is it going to work? Since I enter dialysis all the center I been to are only open Monday to Saturday. The hrs run 6 am (when staff comes in) to 5:45 PM (so staff can get out by 6 pm. I had been asking here since the start .Why in world are dialysis center not mandated to be open 24/7? So what will the petition do? Don’t misunderstand me I’m all for more in center dialysis and far better tx of the folks on dialysis. And why better tx for those on home dialysis? We still have to drive whatever miles to go to a center that offered the tx therapy we wanted. Why can’t we get the training then go back to our local hospital with the Dr we had be seeing for X # of yrs. Right now I drive 100 miles once a month that is where I trained for nocturnal. I’m told if I find another Dr he/she has to be with a center. Even though I will never go back in center for a day .

Well Rich I hope and wish someone pays the petition some notice.
Thanks for all the work You , Bill and Beth , Dori do on behalf of people on dialysis

Bob Obrien

Hi Bob,

The idea is that centers WOULD be open 7 days a week (not necessarily 24/7, though). Folks in-center would then do a 2-week rotation of Mon-Weds-Fri-Sun-Tues-Thurs-Sat instead of 3 days/week. This would eliminate the 2-day “killer gap.”

Please copy and paste and send it to all of your contacts. United we can make things happen!


March 12th was World Kidney Day! It was good time to think about dialysis, but nothing has changed since then. How sad it is that the U.S. lags so far behind the rest of the industrialized world. 20 million Americans have chronic kidney disease (CKD), and 20 million more are at risk. About 375,000 require dialysis–of which 92% do conventional hemodialysis (CHD): 3 treatments/week of 3-4 hours. This is not enough dialysis for most to live healthy and purposeful lives. We want Medicare and the Congressional Kidney Caucus to support better treatment. Won’t you please sign our petition to show your support?

  1. Please take a minute and go to http://www.petitiononline.com/eodD0903/petition.html
  2. Please forward this message to everybody in your address book.
  3. Please post this message to all of your social networking friends.
  4. Please post this message to all of the internet forums and groups to which you belong.

We thank you for your support!

PETITION:
We, the undersigned, ask the Congressional Kidney Caucus to advocate for the Centers for Medicare and Medicaid Services (CMS) to increase the number of routinely reimbursed hemodialysis treatments from three per week (156/year) to every other day (183/year).

We are people on dialysis, care partners, health professionals, family, and friends. Dialysis is not the end of life, but can and should be a new beginning. We believe that so-called “adequate dialysis” (three short treatments per week) merely allows people who need dialysis to hang onto life unproductively–in essence, many are prevented from living the life they were meant to live. This need not be the case! Research has proven that more treatments mean healthier lives, fewer hospitalizations, longer survival, increased productivity, and less overall cost to the healthcare system for people on dialysis.

The U.S has the worst dialysis outcomes of any industrialized nation. Supporting every other day treatments will allow those managing their illness with conventional hemodialysis to avoid the ‘long weekend’ with no treatment—which many studies have shown triples the risk of sudden death from a heart attack. Even this won’t allow the U.S. to catch up; that won’t happen until longer and more frequent treatments are made more widely available. But it’s a start! Please give this vital change your support!

I am a nephrologist from Canada and the Director of the Renal Program. While I strongly support any efforts for more dialysis therapy there is conflicting scientific results. Epidemiologic data reports that more dialysis patients die on Mondays and Tuesdays (after there long break). However, the HEMO study showed no benefit to more intense hemodailysis.

I think that some of your efforts shoulf be spent lobbying for prolonged hemodialysis (8hsx3) as they use in somemparts of France and have shown a huge benefit and home hemodialysis especially nocturnal. These are modalities where the science supports the intervention and hence will be easier to make a case with the funding agencies. It is also importan to note that industry (Fresenius etc) have a financial benefit in shorter (“high efficiency”) hemodialysis. When all you measure to determine adequacy of dialysis is urea clearance this makes sense. However there are many large sized molecule that are the real toxins that make real patients feel unwell and these are really only removed significantly with prolonged dialysis therapies including nocturnal hemodialysis.

Since starting a nocturnal hemodialysi program 4 years ago I am still shocked at the rapid improvement in the patients when they start the (8hrsx6) program.

Good luck,
Nairne Scott-Douglas MD PhD FRCPC

Dear Dr. Scott-Douglas,

The HEMO study was significantly limited by the thrice weekly in-center dialysis schedule. Upon reanalysis, it has become clear that “more intense hemodialysis” was not really delivered in the HEMO study. Both frequency of treatment beyond 3 times per week AND treatment time beyond 3-4 hours are needed to truly deliver “more intense” therapy. Neither was done in that study. So, I don’t believe there is any conflict. Hundreds of studies have demonstrated the benefits of more renal replacement therapy (which is, after all, common sense). Not one has ever shown that the standard schedule is preferable–or even comparable. (For that matter, there has never been a randomized, controlled trial of whether survival is better with transplant, nor will there be. Yet our whole industry believes this to be the case, despite the obvious patient selection issues there. Better dialysis is no different.)

I think that some of your efforts shoulf be spent lobbying for prolonged hemodialysis (8hsx3) as they use in somemparts of France and have shown a huge benefit and home hemodialysis especially nocturnal. These are modalities where the science supports the intervention and hence will be easier to make a case with the funding agencies. It is also importan to note that industry (Fresenius etc) have a financial benefit in shorter (“high efficiency”) hemodialysis. When all you measure to determine adequacy of dialysis is urea clearance this makes sense. However there are many large sized molecule that are the real toxins that make real patients feel unwell and these are really only removed significantly with prolonged dialysis therapies including nocturnal hemodialysis.

When you look up “Choir” in the dictionary (as in “preaching to”), I suspect you’ll see our photo! We are in violent agreement. :slight_smile: In fact, nearly all of our efforts ARE on behalf of longer and/or more frequent HD. This petition was by no means our sole initiative. The entire, stated purpose of this website is to raise awareness and use of PD and home HD. (And we truly mean longer and/or more frequent home HD). One of the biggest steps we’ve taken recently toward this goal was to successfully advocate for a change in the Medicare rules governing US dialysis clinics so that they are now required to educate patients about ALL of the treatment options. The leading reason why people here were not choosing those options in larger numbers is that they had no idea these better therapies existed. (Most people still don’t know).

The purpose of this petition is to raise the floor for people who dialyze in-center. As much as we believe that long, frequent dialysis is best, we are also aware that it will take years for more than a tiny fraction of patients to use it. In the meantime, we would like them to survive longer and feel better.

Since starting a nocturnal hemodialysi program 4 years ago I am still shocked at the rapid improvement in the patients when they start the (8hrsx6) program.
Good luck,
Nairne Scott-Douglas MD PhD FRCPC

Almost like what you see when a patient gets a new kidney, I suspect?

Thank you so much for taking the time to write. I hope you’ll tell your patients about this site so they can join our conversation. They are very fortunate to have a doctor who is so passionate about getting them better treatment!

Warms me all over to see a fellow Canadian putting a paddle in… Alberta seems to making strides towards more nocturnal. While “parts”of Ontario seem to be stuck in the mud… a regular quagmire with wonky bureaucrats pretending nothing is wrong in the cookie jar…very infuriating

We have hit 1800 signatures.

There is a Support the Every Other Day Dialysis Pettioncause on Facebook, Please join the cause.

Hi Folks

Rich, checked out the site. I’m not going to join, when I hit the join button. A small window came up, stating ‘’‘Allowing Causes access will let it pull your profile information, photos, your friends’ info, and other content that it requires to work."" So far with dialysis I don’t think any site I’ve gone to or signed on too has made this request. I’ll sign petitions. I’m talking to my center about the issues that are important to myself as a person on dialysis. And I hope will clear things up for other who end up on dialysis.

As to money, it was and still is my thinking that until there is real give and take between dialysis providers and CMS and Insurance on mandating. That all centers are open 24/7 and centers have rules that don’t change from center to centers.

Don’t centers get payed the same for a person in center 3’x a wk as person doing all the work at home? Or have I misunderstood this tale?

[QUOTE=Rich Berkowitz;17567]We have hit 1800 signatures.

There is a Support the Every Other Day Dialysis Pettioncause on Facebook, Please join the cause.[/QUOTE]

Thanks
Bob O’Brien
Coatesville

Could you give a little info on the origin of the petition as far as was it the original idea of Dori, Bill and Rich or was there a sponsor? And when is the deadline to sign?

Why so many questions? Doesn’t the petition speak for itself? But if you must know, it can be blamed on Skype. Bill and I were having one of our long conversations. I being the antsy acitivist and Bill being the consumate advocaite got to talking that it was about time we dialyzors should begin to act independently of all corporate involvement, especially the drug companies and service providers. We brought in Dori’s expertise. Now that we have brought more along with the petition campaign, perhaps we can expand our base and form a truly independent voice for dialyzors.

No, I don’t think any petition or project speaks for itself until I check it out and discover if the true motive is patient advocacy and/or improved standards of patient care, The industry/clinics have a long history of fraudulent schemes/spin to make it look like they are concerned for the patients’ welfare, but we all know there is a lot of greed. But great that you are speaking of forming an independent voice for dialyzors- this is always music to my ears! So, when is the deadline for signing the petition?

There is no set deadline right now. I plan on presenting taking the petition with me to DC in early May. I will be meeting with the legislative health aides of two of the Congressional Kidney Caucus’s co-chairs who are from Illinois. Bill’s rep is another co-chair from Washington.