I would really appreciate it if someone could list the current kidney bills, give a brief summation and explain how these bills benefit patient care.
Hi Folks
Hi Jane
I thought this web site on the home page gave a break down on what is before congress.Unless they have changed the format.
bob obrien
Yup. Just click the “Legislative Action Center” box at the top of each page (or here http://capwiz.com/meiresearch/home/. That said, legislative advocacy is not our primary interest or a core strength for us. We try to keep up, but folks like Bill are likely far more up to speed than we are. AAKP, RSN, and DPC all do much more in this arena than we do–and all of these groups disagree on key points. So, it’s important to decide for yourself what’s important to you as someone with kidney disease, not just go along with any of them wholesale…
The main point of my question was, I would like someone to clarify what the proposed kidney bills do to improve patient care. But this is interesting- I didn’t know that HDC isn’t strong in the legislative action dept.and that while the other groups mentioned are, that they disagree on key points.
I hope Bill, or someone, can answer my question here in this thread. Personally, I think it’s very confusing and time consuming to figure out the legislation. I’ve seen the newsletters and net announcements from all the groups with their urgent pleas to write your representative, vote for this bill or that one, And I see how they train the more politically savy patients to lobby for these bills. The average dialysis patient is totally removed from all of this- in the dark if you will. They have no voting power because they are ignorant of the process. Decisions are routinely made for the patient population, without their knowledge or input, that directly affect their lives.
So, if anyone can shed some light on how this whole process works, I’d be interested to hear it. Because I don’t see anything out of any of these groups that impresses me as being something I would want to support. There are serious problems in our U.S. dialysis clinics as many can attest to. I, myself, was in half a dozen clinics located in different parts of the country since I relocated several times, and including most of the corporations and some private, and the care was so subpar. This site has helped me more than any to get to much improved care at home- I have gotten my life back!. So when I hear that a group stands for patient advocacy, my question is–what kind of advocacy?..who are they really advocating for??? I invite anyone who can to explain the process and tell me something specific, not general, that their group is doing to improve patient care.
Hi Folks
Hey Jane
I’m not if you have a bill in mind or just the whole process. But the process is long and hard and has no one has all the answers. The problem we have today were born for most part yrs. ago.
I don’t have much faith in dialysis consumers being looked at from the consumer point of concern as the dialysis companies have more $$ on their own ,not counting $$ they might from med-pac.
The media plays a big role in things in what they (media) want to make a major issue. If dialysis could get together like other groups (AIDS, Breast Cancer Alz, not that these problems are not well worth the effort, my Mom has alz, my Wife had both breast removed) we might be able to get more done. But we need the so called consumers groups to have an office in every area where there are centers and centers have the names of these groups on message boards in the centers. And these groups really standing up at centers that need to be watched.
My own trip into dialysis had been very bad from the start, no dr talking to me ,an over crowded center with techs that were more concerned about the lack of pay then consumer care
[QUOTE=Jane;15052]The main point of my question was, I would like someone to clarify what the proposed kidney bills do to improve patient care. But this is interesting- I didn’t know that HDC isn’t strong in the legislative action dept.and that while the other groups mentioned are, that they disagree on key points.
I hope Bill, or someone, can answer my question here in this thread. Personally, I think it’s very confusing and time consuming to figure out the legislation. I’ve seen the newsletters and net announcements from all the groups with their urgent pleas to write your representative, vote for this bill or that one, And I see how they train the more politically savy patients to lobby for these bills. The average dialysis patient is totally removed from all of this- in the dark if you will. They have no voting power because they are ignorant of the process. Decisions are routinely made for the patient population, without their knowledge or input, that directly affect their lives.
So, if anyone can shed some light on how this whole process works, I’d be interested to hear it. Because I don’t see anything out of any of these groups that impresses me as being something I would want to support. There are serious problems in our U.S. dialysis clinics as many can attest to. I, myself, was in half a dozen clinics located in different parts of the country since I relocated several times, and including most of the corporations and some private, and the care was so subpar. This site has helped me more than any to get to much improved care at home- I have gotten my life back!. So when I hear that a group stands for patient advocacy, my question is–what kind of advocacy?..who are they really advocating for??? I invite anyone who can to explain the process and tell me something specific, not general, that their group is doing to improve patient care.[/QUOTE]
hope I help some
bob obrien
I’m so glad you’ve found our site helpful, Jane, that’s why we’re here.
Each of the groups would have to explain for themselves what exactly they are advocating for, and how. I direct the Medical Education Institute (MEI), which put this site together. Our mission is to “help people with chronic disease learn to manage and improve their health.” And our advocacy is with people with kidney disease, renal professionals, and CMS (not legislation, as I said). So, we:
– Conduct and publish research with people who have kidney disease (and sometimes renal professionals)
– Translate the findings of our research and other published research into evidence-based patient education
– Spread the word about what we’ve learned, through presentations, articles, exhibits at national meetings, and websites (this one, Kidney School - http://www.kidneyschool.org, Life Options - http://www.lifeoptions.org
– Make policy recommendations
Hi Folks
Jane , I have this board and site to thank for helping me get on nocturnal .
Dori and Beth have and are a great help to dialysis consumers getting information. It is also the members who keep adding more every day. And now if the Good Prof. will chip in from time to time that will help keep the talk going.
[QUOTE=Dori Schatell;15054]I’m so glad you’ve found our site helpful, Jane, that’s why we’re here.
Each of the groups would have to explain for themselves what exactly they are advocating for, and how. I direct the Medical Education Institute (MEI), which put this site together. Our mission is to “help people with chronic disease learn to manage and improve their health.” And our advocacy is with people with kidney disease, renal professionals, and CMS (not legislation, as I said). So, we:
– Conduct and publish research with people who have kidney disease (and sometimes renal professionals)
– Translate the findings of our research and other published research into evidence-based patient education
– Spread the word about what we’ve learned, through presentations, articles, exhibits at national meetings, and websites (this one, Kidney School - http://www.kidneyschool.org, Life Options - http://www.lifeoptions.org
– Make policy recommendations[/QUOTE]
bob obrien
[quote=Jane;15052]The main point of my question was, I would like someone to clarify what the proposed kidney bills do to improve patient care. But this is interesting- I didn’t know that HDC isn’t strong in the legislative action dept.and that while the other groups mentioned are, that they disagree on key points.
I hope Bill, or someone, can answer my question here in this thread. Personally, I think it’s very confusing and time consuming to figure out the legislation. I’ve seen the newsletters and net announcements from all the groups with their urgent pleas to write your representative, vote for this bill or that one, And I see how they train the more politically savy patients to lobby for these bills. The average dialysis patient is totally removed from all of this- in the dark if you will. They have no voting power because they are ignorant of the process. Decisions are routinely made for the patient population, without their knowledge or input, that directly affect their lives.
So, if anyone can shed some light on how this whole process works, I’d be interested to hear it. Because I don’t see anything out of any of these groups that impresses me as being something I would want to support. There are serious problems in our U.S. dialysis clinics as many can attest to. I, myself, was in half a dozen clinics located in different parts of the country since I relocated several times, and including most of the corporations and some private, and the care was so subpar. This site has helped me more than any to get to much improved care at home- I have gotten my life back!. So when I hear that a group stands for patient advocacy, my question is–what kind of advocacy?..who are they really advocating for??? I invite anyone who can to explain the process and tell me something specific, not general, that their group is doing to improve patient care.[/quote]
I’ve been thinking about how to answer your questions Jane - I’m stuck. I could give you a rundown of the current political maneuverings, the Bills that have been introduced but is that what you’re really looking for? What I hear you saying is “Why is this so complicated? Why is this (fill in an outrage) allowed to continue?” Along those lines here are some of my thoughts.
The issue is what is meant by patient advocacy. A patient is one who is in a business relationship with a healthcare provider - we are only the patients of those we pay or those who are paid on our behalf - so then patient advocacy would be along the lines of consumer advocacy. The goal of both consumer and patient advocacy is to address the balance of power in unbalanced relationships. Both the consumer and the patient are in unequal relationships, they are subordinate. The dynamics of a subordinate relationship and human nature combine in all instances to breed injustice. Should it surprise us that the subordinate relationships that comes with dialysis also breed injustice? No not really. The question is how to help the situation in favor of the patient?
The standard approach to improve the dynamics of a subordinate relationship is to change the laws, in this case change the regulation of dialysis units but this is not as easy as it sounds. The laws that exist are complicated and changes have to go through the meat grinder of the US legislative process; as with all meat grinders the output only vaguely resembles the input. And one thing you and I must acknowledge is that laws and regulations are for everyone, while patients are all different. Laws and regulations have to be based on the lowest common denominator.
So here is the problem - you would like to improve the experience of specific individuals at specific units in specific ways directly, while national advocacy is aimed at improving the structure of the system so that eventually the care experienced by all individuals is improved in specific ways. This indirect approach is not going to immediately (and may never) help the person in a suboptimal situation. This is what you find so disagreeable: no group or Bill in Congress has taken on the direct approach - all this advocacy is their best guesses at which indirect approach will do the most good and least harm.
My approach as an individual is to not be a patient. As you know I identify myself as a dialyzor one who must accommodate a diminished renal function through dialysis and dialysis compatible living choices including diet, medications and exercise. My clinical relationship with my provider is not central to my life as a dialyzor.
My approach as an advocate, however, is 180 degrees different. I put my provider at the center of my analysis - I judge something as good or bad based on how it will impact my provider and their patients. I’m duty bound to do this but I’m lucky because in my judgment what would be best for the Northwest Kidney Centers has always been what would be best for people on dialysis generally. But this still leaves the individual at a suboptimal unit unhelped; I do not know how to help this person directly.
Hi Folks
Hey Bill
Could explain some terms you use.
““The dynamics of a subordinate relationship and human nature combine in all instances to breed injustice”” Quote Bill P.
""Laws and regulations have to be based on the lowest common denominator. “” Quote Bill P.
""But this still leaves the individual at a suboptimal unit unhelped; I do not know how to help this person directly.[/QUOTE] Bill P.
The reason I ask is that I don’t want to misunderstand what you are saying or trying to say. I was going to reply ,but I just want be sure, before I put my two cents in on this, by the way your post on this and the other thread were great reading.
[QUOTE=Bill Peckham;15056]I’ve been thinking about how to answer your questions Jane - I’m stuck. I could give you a rundown of the current political maneuverings, the Bills that have been introduced but is that what you’re really looking for? What I hear you saying is “Why is this so complicated? Why is this (fill in an outrage) allowed to continue?” Along those lines here are some of my thoughts.
The issue is what is meant by patient advocacy. A patient is one who is in a business relationship with a healthcare provider - we are only the patients of those we pay or those who are paid on our behalf - so then patient advocacy would be along the lines of consumer advocacy. The goal of both consumer and patient advocacy is to address the balance of power in unbalanced relationships. Both the consumer and the patient are in unequal relationships, they are subordinate. The dynamics of a subordinate relationship and human nature combine in all instances to breed injustice. Should it surprise us that the subordinate relationships that comes with dialysis also breed injustice? No not really. The question is how to help the situation in favor of the patient?
The standard approach to improve the dynamics of a subordinate relationship is to change the laws, in this case change the regulation of dialysis units but this is not as easy as it sounds. The laws that exist are complicated and changes have to go through the meat grinder of the US legislative process; as with all meat grinders the output only vaguely resembles the input. And one thing you and I must acknowledge is that laws and regulations are for everyone, while patients are all different. Laws and regulations have to be based on the lowest common denominator.
So here is the problem - you would like to improve the experience of specific individuals at specific units in specific ways directly, while national advocacy is aimed at improving the structure of the system so that eventually the care experienced by all individuals is improved in specific ways. This indirect approach is not going to immediately (and may never) help the person in a suboptimal situation. This is what you find so disagreeable: no group or Bill in Congress has taken on the direct approach - all this advocacy is their best guesses at which indirect approach will do the most good and least harm.
My approach as an individual is to not be a patient. As you know I identify myself as a dialyzor one who must accommodate a diminished renal function through dialysis and dialysis compatible living choices including diet, medications and exercise. My clinical relationship with my provider is not central to my life as a dialyzor.
My approach as an advocate, however, is 180 degrees different. I put my provider at the center of my analysis - I judge something as good or bad based on how it will impact my provider and their patients. I’m duty bound to do this but I’m lucky because in my judgment what would be best for the Northwest Kidney Centers has always been what would be best for people on dialysis generally. But this still leaves the individual at a suboptimal unit unhelped; I do not know how to help this person directly.[/QUOTE]
[quote=bobeleanor;15069]
Hey Bill
Could explain some terms you use.
I’m thinking that when a person has to face a take it or leave situation it will breed injustice and the worse the consequences of leaving the more likely it becomes. This can also lead to the sense of feeling trapped and hopeless. Dialysis is an extreme example which is why when units that have misguided blanket policies e.g. no eating, no visitors it feels worse to the dialyzor than it does to the people we try to explain it to, and when it is worse, when units/people come up far short it greatly increases the dialysis burden.
[quote=bobeleanor;15069]
[quote=Bill Peckham;15056]
Laws and regulations have to be based on the lowest common denominator.
[/quote] [/quote]
You can’t have different regulations for different people or at least we don’t. The national rules - the laws Congress passes or the conditions of coverage (rules Medicare uses) have to work every where, for everyone.
[quote=bobeleanor;15069]
Changing the way Medicare pays for dialysis isn’t going to help someone who feels trapped in a unit that feels unsafe or unwelcoming. Next week the Senate Finance Committee will most likely put forward a Bill that bundles medications and labs with the composite rate - I think the program’s reimbursement should be changed with great care and it is all in the details I’m sure we’ll be discussing it but it is hard for me to see how the outcome of all this will make people follow be better at their job. For instance no legislation that I’ve seen will make someone follow infection control procedures. I don’t know how, on a national basis, to make people follow infection control measures or rather, I don’t know what should be done when people do not follow best practices.
The analogy I like to use is that in-center HD is basically like outpatient institutionalization. For those three treatments a week, folks are subject to all of the rules of a live-in bureaucracy.