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Rich Berkowitz
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Enough already! Stop the drumbeat! That’s the message this dialyzor and many others are crying. Quit messing with our lives. After all it’s our population that has the most to gain -- or lose. How many lives must we lose to renal failure, to both fatalities and spirit? Too many people have died too early needlessly. Too many people have seen their essence disappear. It ain’t easy to feel yourself dry up like an overused washcloth. Just try dialyzing three days per week for up to four hours each time. Just imagine all facets of your life shriveling up. Imagine feeling washed out with excess fluid being drained from your body too fast. Imagine just surviving a long weekend with body chemicals getting all out of whack. I can imagine both surviving the long weekend and having a heart attack during and right after. I've done it. But I’m a survivor. I also got out of the prison of conventional hemodialysis and got home just in time to live on not just for another day, but another six years. And it’s not just a life of getting from one day to the next. It’s a purposeful life where I found my new calling – that of an advocate for more optimal dialysis. I’m an advocate for rehabilitative therapy that allows people to be as best possible restored to their life before kidney failure struck them down. For people of working age, they continue or regain the ability to be employed. To others, it means a closer and more meaningful relationship with family and community. There are few people I know who have broken the chains of inadequate therapy who would return in-center. Is this proof enough for our ivory-towered clinicians (no, not all live in an ivory tower)? Apparently not for many who in the face of reason continue to demand more studies, which presumably they will survive to write another scholarly paper. It’s time for patients to loudly declare “enough already. Stop messing with our lives”.
Where have they gone indeed? As one would say, ‘that’s a good question”. Surely Fresenius doesn’t think the Baby K is the answer for home hemodialysis. Not when a growing number of people are demanding portability so they have the option to travel. So far NxStage is the only game in town, and with a growing following. But dialyzors have been demanding more even from the leader in home hemodialysis. Since its inception dialyzors have gotten just a taste of what a home machine can do. From the time ten NxStagers cruised together on the Freedom Cruise to dozens of dialyzors and care partners going to NxStageUsers Meet Ups and Conferences, people have learned travel and a better quality of life need not be given up from the lack of inadequate therapy. Yet, we want more. We want easier and lighter machines. We want to be able to live “normal” lives. NxStage should certainly be credited for re-establishing home hemodialysis after it had practically disappeared from the landscape. The Aksys machine didn’t survive, although it too allowed people to go back home. The Allient from Renal Solutions was supposed to be the new entry and even got its FDA approval to be marketed. Fresenius could have and should have introduced it to the marketplace after its purchase. They certainly had the finances and a defined market since it’s the largest dialysis provider in the country. It seems like it should have been pre4tty easy with its captive patient base. So why did Fresenius not introduce a machine that seemingly didn’t required any additional work. Peter asks a good question and I think we deserve an answer. Was Fresenius serious about home hemodialysis, or was the purchase of Renal Solutions and Xcorporeal a way to stifle the market. Many people believe the FTC should force the breakup of both Fresenius and DaVita as both continue in their rampant consolidation of the dialysis provider arena. But perhaps a closer look is due at a company which, because of its wealth, is looking to control dialysis in other insidious ways. How can we let this continue? If other machines are available, dialysis patients should have a choice of what is better for them. And surely the RSI sorbent technology would have been able to be put into a more portable chassis. So what are the intentions of Fresenius? We do know that Renal Solutions filed a 510K for the 2008 Sorbent Hemodialysis machine in August 2010. It named the predicate devices as the Allient and the 2008T Hemodialysis Systems. Please don’t tell us these are the plans from a purchase that had so much promise for home hemodialysis. Fresenius, please tell us that you are trying to expand the potential for home hemodialysis.
Gary and I have been talking almost daily on this subject for a couple of months. We have often differed on strategy, but not the basic premises. He is absolutely correct a well dialysis patient model of care that addresses larger societal concerns is needed. We disagree on some concepts, but generally are in agreement. I have to admit that it bothered me that additional incentives will be necessary for providers to want to rehabilitate patients, but he’s correct that there’s not enough money in the system for its accomplishment, especially considering the impact bundling and its corresponding lower reimbursements. Already we’re seeing providers cutting back on named pharmaceuticals and other specific ones. I’ve been tossing around a chicken or egg question about what comes first — a well patient or rehabilitation. I remain in the camp that most patients are not getting enough dialysis and get more debilitated as time goes on making rehabilitation less likely. So I’m still a fervent believer for longer and more frequent dialysis, meaning home dialysis for more people. There’s a greater chance of habilitation, keeping people healthier as they begin their dialysis journeys. However, it’s true that the original intent of Congress when the Social Security Act first hit the books that rehabilitation was to be foremost. So in my own dilemma of the chicken and egg question, I’ve come to the conclusion a well patient is needed first. So what’s needed to make rehabilitation a success? It’s clear to me that we must get more people to go home. But the fact is that over 90% of dialysis patients are still in-center. One thing needed is to have more centers open after 5:00pm. Dialysis centers must conform to workers schedules and not the other way around. With centers open in the evening it would be possible to have more frequent dialysis for some per the protocol of the FHN Study where daily was done for an average of 5.2 days per week. After that shift, centers could remain open for nocturnal dialysis, preferably every other day rather than three times per week as conventional hemodialysis should be. One hope would be that the members of the frequent group could move home when they felt more comfortable, thus making slots available for others. Will this require more funding for providers other than typical reimbursements? Perhaps! But we already know that more frequent dialysis also brings the need for fewer meds and this translates into less cost in the age of bundling. By getting people off of disability and gainfully employed again (assuming jobs are available as the economy rebounds), the system can save a tremendous amount of money. In fact, many people are getting Medicare benefits because they are disabled by CKF. That would possibly mean they would regain employee health insurance and return to the world of private pay instead of Medicare. To get a perspective on the data which indicates only 19% of dialysis centers remained open after 5:00pm, only 2% were employed through a vocational rehabilitation service and only 20% were employed, please see Table 20 of the Annual ESRD Consolidated Network Report for 2008!. So where can extra money come from to handle additional expenses. We know it’s not going to come from the bottom lines of the for-profits. We also know it’s not going to come from Medicare or the government. Once again, Gary offers the only real solution, which is to shift funding from Medicare to the private insurance companies who pay more than Medicare. Providers have been trying to get the Medicare Secondary Payer (MSP) provision extended from its current 30 months before Medicare picks up responsibility for the majority of reimbursement. It’s almost guaranteed they will try again. Thus, more funds would be available for dialysis. But there will be a big fight to accomplish this as the insurance companies will object. It’s time for patient organizations to step in and speak in one voice to represent their constituencies. Not to be necessarily adversaries to providers, but they must find a way to truly help return the ESRD program to its initial intent. They must help dialysis patients regain as much as possible the lives they had before their kidney failure and allow them to meet their own life goals. If that means insisting on strings attached to any increase in the MSP, then that’s what they must do. Of course, there are other issues which need to be tackled. Patient organizations must always put patients first. We need to depend upon ourselves. We need to be our own best advocate. No one knows better about dialysis than us. Rich Berkowitz NxStageUsers
@Roberta...We're not trying to ignore the in-center population at all. However, no matter how safe you make a center, the vast majority of patients still will be getting inadequate dialysis and will continue to get more debilitated until they die. They will continue to fall from their previous self, whether that was employment or being a productive member of society. Therefore, we need to get beyond the safety issues. If one wants to go by numbers, mMore people die from bad dialysis. That's the area we must improve. Several studine have shown that is patients are informed and learn of home modalities before starting dialysis that between 45% - 60% choose a home modality. Yet only about 8+% are at home. So what does that tell you. The Conditions for Coverage must be adhered to and nephrogists have to start doing their jobs. Also, ti wouldn;t be impossible for providers to set up 6X3 programs based upon the FHN. The potential for more frequent dialysis is present.. But it needs a push - of whatever strength is required.
Toggle Commented Jan 8, 2011 on A plea for a unified approach at FIX DIALYSIS
So what has happened. This discussion has migrated from one page,Fix Dialysis, to four. Unbelievabe! We can't even keep the thread in on location! Now I've got to go to dofferent locations a piece everything together! And then some chimed it to put forth reasons why their site should be the central location. We need to get this territorial chauvinism out of the formula if we're ever going to go forward. We need a site which is machine and modality neutral. That is if we feel there a problems across the entire range of U.S. dialysis. Fix Dialysis is just that. It's a place where we can talk across all lines. It's true we all may have disparant views in how to do that. But it's a starting point. I don;t want to fix dialysis just for those at home. In fact, that's probably the last place that needs fixing. The 8+% at home today are getting the better treatment. Even there we'll have our differences as to whether HD is better than PD, and whether NHD is better than SDD. But let's put petty differences apart and start talking about substantive issues. Also, if one has a strategy for fixing dialysis, please come to the table with an action plan. The time for talk is over; the time for doing is now.
Toggle Commented Jan 8, 2011 on A plea for a unified approach at FIX DIALYSIS
Yes, there should be unity of purpose. The proponents of optimal dialysis, or whatever you want to call it, whether it be at home or in a center, need to find common goals in order to work together. Hopefully that would include all groups from patients to nephrologist to nurses to providers. But in the U.S. these groups are splintered. Even within each of them they are splintered. There are differences in patient organization regarding a commitment to better dialysis. Yes, there is corporate influence within some. Some patient groups are more focused on transplantation and don’t advocate much in the dialysis arena. We have to acknowledge there are differences. We have to wonder about nephrologists and their organizations and commitment to more optimal dialysis. Even looking at the upcoming Home Hemodialysis Symposium at the ADC is bewildering. Here we have a group of nephrologists and nurses committed to home dialysis, yet there is nothing on the program about reaching outside of the choir and organizing to reel in more renal professionals who haven’t bought in to more optimal dialysis yet. They’re just talking to each other. We need to get their involvement too. But John, you are also saying we need to find a way to work with those same corporations. That’s fine, as long as they want to put the interests of the patients first and earn their profits from performing a good job. But is that the case. Unfortunately it has been the forces of for-profits which totally co-opted and corrupted the dialysis landscape in the United States. The rest of us would love nothing more than these dialysis providers working to bring about more optimal dialysis. We proponents really don’t want an antagonist relationship with our for-profit providers. However, we cannot ignore their acts of the last 40-some years in how they have “treated” patients. It’s no secret most of their profits comes from billing private insurance. Gary is right, that’s the time they will be more likely to keep their patients healthy. Once on Medicare, a patient is worth a lot less if anything. It really does sound pretty bad when you assign dollars and cents to the worth of a human being. But that’s exactly what they have done. Before bundling when epo was billed separately, it was a profit center as they overdosed patients. Now with bundling, epo is a cost center. Let’s see what their practice will be now. So let the for-profits come to us and say they want to work with us to put more optimal dialysis in motion. Yes, we need to find common purpose. Other than a public discussion, a few of us will also be meeting privately to see what the few can agree upon. There must be some points we can coalesce around. We may all be stakeholders in this fight, but we also may be bringing different agendas to the table. We will have to be willing to listen to each other and hope we can compromise to find common purpose. As to a place for public discussion, Fix Dialysis is fine. But we also must be aware of discussion going on else ware and link to them. There have been many comments on the ProPublica pages we ought not ignore. If fix Dialysis is the place, then it must be more open so anybody can start a discussion thread. I’m sure Gary wouldn’t have a problem with that. Okay, let’s get to work and try to form this strong, unified internet voice which will carry us to the promised land of more optimal dialysis. I think we can all agree we want dialysis patients to be rehabilitated. But there will be differences of opinion as how to accomplish that. I think we can all agree we want dialysis patients to live as normal a life as they can, but there will be differences to how we accomplish that. We live in a country where the costs are higher and the outcomes lower than others. That’s one of the biggest dilemmas we need to reconcile. All of the stakeholders have a part in solving that problem. Let’s begin!
Toggle Commented Jan 6, 2011 on A plea for a unified approach at FIX DIALYSIS
Great post. You're correct in that there was no mention of more optimal dialysis. D. Murphy's idea of a proactive dialysis patient was a man who had listed himeself for a transplant in several locations. Depending on his blood type, he should have a better chance of getting a transplant as long as his health remains good enough to remain on the active list. But must be a reason why only about 80,000 are on the transplant list out of nearly 400,000 on dialysis. It's not just people don't know about a transplant option;. Much of it is because people don;t stay healthy enough to reach the day their name would be called. That's why the emphasis must be on more optimal dialysis. That's the only way to help the most people on dialysis to have a more healthful and productive life.
MM, I believe you're on the right track. You're already have optimal dialysis on the radar screen. You've got a tremendous positive attitude going into the game. That's essential. I too had a positive attitude although it took me three very difficult years to get home, and that attitude did turn sour a few times. Regardless, let's not kid ourselves; dialysis is a hard life. It is a horrible treatment. If it wasn't the fact that it keeps us alive that is. We ought to wear it as a badge of courage.
I have to agree with Bill, stipends should be paid directly to dialyzors once they go home. That would be an additional incentive for them to embrace more optimal dialysis. The stipends would help with the additional expense of added utilities (water and electricity) and may also go toward paying the partner. Once they experience feeling better they may then want longer treatments in addition to more frequency. Lo and behold, many who are still of working age will want to get re-employed. Irrespective whether the MSP is extended when they return to work, disability payments and fewer hospitalizations would be the financial upside to government, even if people continue to have Medicare. I’m beginning to have several problems with trying to extend the MSP in order to influence dialysis centers to promote rehabilitation by providing more optimal dialysis so they can profit more. First, I just have an issue with putting more money in the troughs of the for-profit to do something they should be doing anyways. Secondly, I don’t see it as practical. It would mean legislative changes and I believe the insurance companies would fight like hell. I don’t believe there is anything in Health Reform that says dialysis patients can continue with their EGHP after the 30 month MSP period. Please correct me if I’m wrong. I think either way we go we end up with rehabilitated patients. In either case I think the changes must be led by patients, and right now the only ones who are active are home dialyzors. So one of the biggest questions is how we engage those who have become more debilitated and don’t own their CKF. Home dialyzors can take the lead now, but in-center patients have to follow. The easiest way to influence them would be through their nephrologists. But obviously that has not worked yet. But we do have nephrologists who are close to the cause and have been advocating for years. NxStageUsers will be forming a Medical Advisory Board to have dialyzors and doctors get together to try to develop a plan. So far everybody has been talking to the choir. We need to get beyond that. As Dori suggests, perhaps it will help to do away with the justification letters for the 4th and possibly more dialysis sessions. But centers would still not be set up for nocturnal sessions. Most centers only have recliners and not beds. For some of us, a recliner is fine, but others would prefer a bed. That also would me that some daytime patients would also have to use a bed. There are complications in terms of making the center ready to provide both modalities. That might be a reason why so few are doing it now. Another problem is setting the hours which is most conducive for sleep. Dori is correct that the nocturnal session should start later. Her suggested schedule would work better than the one now employed. There should be enough time between shifts to get people off and on. When I did nocturnal in-center, my session was to start at 8pm and finish around 4am. It was terrible. I found myself going back to sleep once I got home. It wasn’t because I was washed out, but because I didn’t get a good night’s rest. There were other problems with my particular nocturnal center, but not knowing if that was the rule, I won’t comment on it. It will be interesting to see how CMS and members of Congress react to the DFR’s and the FHN results. But it’s our duty to make sure they aren’t ignored. Correcting the U.S. dialysis system will be difficult. I don’t know if anybody has all of the answers in how to do it. In a way, we’re still a square one from over 30 years ago. But beginning to openly discuss the situation hopefully will bring out some solutions.
Thank you Peter for saying talking to Rich Berkowitz is anything but horrible. In fact, I talk to him all of the time and find him a decent chap. In addition to the intelligent way about him, he is witty and has an incredible talent to be quick to the point. And he let's you talk, which is more than can be said about many. As to Dr. McClelland, he may be one of the many nephrologists that doesn't prescribe optimal dialysis. That would allow his patients to have a brighter outlook on live, even though he may not. But I have to agree with him; dialysis is horrible. That's not to say we can't adjust our lives and make it a part of it. We have successfully done that and many of us are living quite okay. But it is a hard life and we shouldn't deny that. Your idea of optimal dialysis might be having a good meal, talking to Rich Berkowitz and writing blog pieces. My idea is falling asleep for 7+ hours and waking up not even knowing I just had a dialysis treatment. But as we agree, optimal dialysis is not the same for everybody; you like to talk to Rich Berkowitz and I like to dream with him.
Longevity on dialysis is obviously a relative term. One if the most important assets one should have is a positive attitude. Barbara is a good example of that. Although we live one day at a time, it's important to have future plans and hopes. We must be able to look forward to a "normal" life. While in-center, I had a heart attack driving home from a dialysis session. I survived and going home with more frequent dialysis saved my life as I was already degrading to the point of requiring extra treatments to manange my interdialytic fluid gain. It's not that I was non-compliant in term of watching my fluid, but it was a case that my vascular system could not handle even relatively small gains. One thing I have always had in common with Barbara is that positive attitude. This year exemplifies what one can do while on dialysis. The year started with the 7 Day Freedom Cruise to the Caribbean in which 10 NxStagers shared a great experience. A speaking engagement at ADC and a DC lobbying trip came next with other advocacy activity. Planning for the NxStageUsers 1st Annual Meet Up and Conference was extremely time consuming but very gratifying. Did I mention two knee replacements fit in between June and November. The knee replacements were done because I'm looking forward to many years of travel and activities to which my arthritic knees were going to make difficult. Everything I did was for looking to the future, and there's no reason why someone doing optimal dialysis can't do as well. The key is to be able to live well with a chronic condition. It's true our kidneys have failed, but that surely doesn't mean our lives have to come to an end. Dialysis is not the end of life, but just a nre beginning. Let's all remember that and adjust our attitudes if needed. None of us are going to live forever, but that no reason to become negative. Barbara has found a way and I have too. There's no reason why you can't join us.
Wand, if she isn't a home dialyzor, she would have to book through a company like Dialysis at Sea.. This is an extremely expensive way to go as Medicare won't pay for the treatments. On the other hand, we brought our portable machines with us and had NxStage deliver the supplies to the boat. We dialyzed in our own cabin. To see what it was like, please go to NxStageUsers website ( ). You'll find information on the homepage ( ) as well as the Forum ( ). We are planning more events and trips in the future. You may want to ask your friend if she is interested in dialyzing at home.
Toggle Commented Jun 20, 2010 on We're Taking Dialysis to Sea at 2010 Freedom Cruise
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Leslie and everybody else, please follow future announcements about upcomings events and trips at the NxStageUsers website. You'll find information on the homepage as well as the Forum.
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With the passage of the ACA, it is true that insurance companies will not be able to deny coverage to a person with a preexisitng condition beginning in 2014. That means that anybody getting a transplant beginning next January should be able to continue with their current health policy. Those whose insurance lapses before 2014 should be able to get into one of the high risk pools within their state.
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Much better letter than the one written, but I'm still not convinced one should have been written in the first place. With everything going on in Congress regarding health care, staff members are currently absorbed with that. Although it's necessary to keep in constant contact, there's an art in when to ask for something, and now isn't the time. It would have been more appropriate to write a letter to Representatives during the Open Comment period. I, too, see how this can cause unintended consequences. CMS doesn't need the additional pressure now, which more or less is after the fact. There's no doubt in my mind the final rule will not be all we would desire. But that fight will have to wait for another day. In dealing with our Reps now, I think it should be low key and more educational in nature. Let's build support now so when we do have an "ask", there will be more receptive ears.
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Curious indeed. Although the issues raised in the most part were talked about last year at the Town Hall and Comment Period, the absence of a discussion about home dialysis is stunning. If there was ever one area to change in the dialysis community it would be to drive more dialyzors home. What's needed is more optimal dialysis, not find a way to only pay for less adequate treatments. It's true dialyzzors' co-payments will be affected, and we spoke against that earlier. But there are better ways to deal witht the situation. Obviously we don't want providers to go broke in treating dialyzors, but nor do we want the cost of meds to go unchecked as well. Providers can alleviate the impact of meds by moving more dialyzors home, preferibly nocturnal. Then binders and calcimimetics arent't the problem it is today. That's not to say the letter doesn't raise a valid point. It does. But it's also in the vacuum of reqally doing what's best for dialyzors. How the letter talks about everything but home is amazing. One has to question what their priorities are. The reality is there must be some cost containment. It's not a perfect world. It also seems any changes from this point on regarding the CMS's final rules will have to come from legislative action. I agree that CMS was not charged with including meds in the bundle, but as Bill suggests, the Senate version of Health Care "Reform" specifies the issue should be studied. Of course, that also imples a bill will be finally passed. From a strategic standpoint, it's probably too late in the game to try to influence CMS anymore than what occurred during the Comment Period. That's not to say continuing education should not occur. It should and it must. But any education also must include home dialysis.
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Bill, I don't think so. Since immunosuppressants wouldn't fall under bundling because it's not dialysis specific, it would then be a Part "D" med. Each individual insurance company that has a Part "D" plan can decide which meds are covered. I would doubt they would have immunosuppressants in their plans. Also, if the Dems go ahead with reconciliation, the House would have to pass the Senate version and hope differences can be ironed out afterwards. And the only items that can be changed are those that have to do with the budget. Adding immunosuppressants in without taking something out would obviously not be budget neutral. I certainly wouldn't want to see them take something else away from dialyzors.
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It will be interesting to hear the background talk at the NRAA meeting this May in DC. If CMS is trying to justify the inclusion of meds and labs with the upcoming TEP meetings to determine QIP, there could be more consolidation, most likely in 2011. If I were Fresenius, I would wait until after bundling takes effect when the prices may drop. But I still believe the smaller independents can respond by moving more dialyzors home, and especially nocturnal to alleviate the need for binders and calcimimetics.
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This will be my third NxStage get together, not counting the one at sea. I'll be there hoping more people connect with NxStageUsers. At each of these events we pick up more members. I'm looking forward to Seattle.
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Stacy Without an E is a perfect example why the Every Other Day Dialysis Petition was started. In-center dialyzors are normally being cheated of the extra treatments they need to live a healthier and more purposeful life as Stacy is. It's a credit to her neph and dialysis center to allow her to have more treatments. Now if we can only get all of the others to do the same. It's not to late to sing the Every Other Day Dialysis Petition.
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