I Hate Dialysis Message Board
Dialysis Discussion => Advocacy => Topic started by: okarol on September 29, 2007, 11:16:42 PM
-
I went to the Renal Support Network Meeting this week.
They had some great speakers and covered:
• how to organize a successful patient education event
• how to participate on renal committees and coalitions
• how to effectively communicate with elected officials
• how to contact and write for local media and industry publications
• how to share your story to impact change in the community
• how to be an effective leader and patient advocate
The best part was meeting so many people who are trying to make improvements and changes for the benefit of all kidney patients.
And it made me aware that we all have a voice, and we have choices. IHD is a powerful group!
But we need to be heard.
Hopefully we can be more organized about writing to our legislators and asking for their support with how they vote on ESRD and Medicare bills.
And get more member stories told in local papers, and in their communities, and make more people aware of whats happening with kidney patients, dialysis and organ transplants.
To learn more about how Renal Support Network (RSN) is continuing its tradition of educating kidney patients and their families, of providing hope for a better tomorrow, and of inspiring patients to achieve their dreams go to http://www.rsnhope.org
And next time you have a chance to go to one of their conferences - do it!
-
When I was on dialysis I used to look around the treatment center at all the misery and suffering going on and wonder how a rational, democratic government could care so little about all these tragedies, doing nothing to shorten waiting lists for transplants or to make life on dialysis better for patients. But then my next thought was about the people living in alleyways in cardboard boxes and how the government did nothing for them either. The unavoidable conclusion from these and other social tragedies which are left unaddressed is that Marx was right: the government really doesn't care about the people, and instead consists justs of agents who work for the interests of wealthy corporations to make sure the economy runs to their benefit. Everything else can go to hell in a handbasket, as long as the market is functioning profitably. We don't live in a democracy but in a plutocracy which poses as a democracy to enhance its social control.
That is why I have no faith in political campaigns to improve the situation of renal patients. There have been countless such campaigns over the years. I remember as a child in the early 1960s seeing over and over again a television commercial of two boxers fighting and the voice-over saying, "These fighters cannot use a kidney punch because it would be devastating to the body. Give to the Kidney Foundation." What came of all that? All these efforts presume that the government is rational, caring, and democratic, but it is none of these things so nothing will be done. If, on the other hand, you were an oil company wanting a change in the drilling regulations or environmental laws, the government would hand you a pen to write your own legislation before rubber stamping it.
-
When I was on dialysis I used to look around the treatment center at all the misery and suffering going on and wonder how a rational, democratic government could care so little about all these tragedies, doing nothing to shorten waiting lists for transplants or to make life on dialysis better for patients. But then my next thought was about the people living in alleyways in cardboard boxes and how the government did nothing for them either. The unavoidable conclusion from these and other social tragedies which are left unaddressed is that Marx was right: the government really doesn't care about the people, and instead consists justs of agents who work for the interests of wealthy corporations to make sure the economy runs to their benefit. Everything else can go to hell in a handbasket, as long as the market is functioning profitably. We don't live in a democracy but in a plutocracy which poses as a democracy to enhance its social control.
That is why I have no faith in political campaigns to improve the situation of renal patients. There have been countless such campaigns over the years. I remember as a child in the early 1960s seeing over and over again a television commercial of two boxers fighting and the voice-over saying, "These fighters cannot use a kidney punch because it would be devastating to the body. Give to the Kidney Foundation." What came of all that? All these efforts presume that the government is rational, caring, and democratic, but it is none of these things so nothing will be done. If, on the other hand, you were an oil company wanting a change in the drilling regulations or environmental laws, the government would hand you a pen to write your own legislation before rubber stamping it.
I have seen changes take place when a person goes to visit their congressman or senator. Putting a personal face on an issue gets attention, and I believe patients have the power to be heard.
I hope you can help - whether you believe or not - thanks!
-
If we don't help fight for rights for renal patients, who will? I have to believe we can make some kind of difference. I need to have hope and I need to be proactive and do something. Just being negative, full of doom and gloom isn't helping the situation; neither yours or the political atmosphere. Just my :twocents;
Thanks Karol, for being an advocate for all of us. Jenna is certainly fortunate to have you for a mother.
-
If awareness is raised in just one person, if one more dollar is donated, if one more person signs a donor card then isn't it all worth it?
If one person finds out that they maybe at risk for kidney disease and gets tested then everthing is worth it.
-
I remember as a child in the early 1960s seeing over and over again a television commercial of two boxers fighting and the voice-over saying, "These fighters cannot use a kidney punch because it would be devastating to the body. Give to the Kidney Foundation." What came of all that?
Once again, there seems to be selective memory loss of your medical history knowledge.
First of all, much of the contributions to the National Kidney Foundation back then went to something quite important: kidney transplant research.
Then, in the early 1970's, NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP) joined with others in the renal community to fight for the enactment of the Medicare ESRD Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s aakpRENALIFE) to keep everyone informed.
One of the most memorable testimonies came from a patient while hooked up to a dialysis machine in the hearing room!
It was October of 1971, when Shep Glazer, then Vice President of NAPH, testified before the House Ways and Means Committee while attached to a dialysis machine. Shep's appearance and testimony, along with many other dedicated individuals, in front of this influential Congressional committee helped to significantly raise the awareness of end-stage renal disease and set the stage for a landmark piece of legislation.
Shortly after these Congressional hearings, Congress approved the legislation that led to the implementation of the Medicare ESRD Program. It provided federal funding for those patients who required dialysis due to end-stage renal disease. It remains one of the most significant developments in the history of the treatment of ESRD in the United States.
The unavoidable conclusion from these and other social tragedies which are left unaddressed is that Marx was right: the government really doesn't care about the people, and instead consists justs of agents who work for the interests of wealthy corporations to make sure the economy runs to their benefit.
Now it's my memory that needs refreshing. Please remind me, which Marxist society allows its ordinary citizens to protest or otherwise seek redress on a medical or social tragedy?
-
Karol, what would you recommend doing to get local news coverage (paper or otherwise) on my story and organ donation in general? Do I simply just start sending them e-mails?
I would like to do these things • how to contact and write for local media and industry publications
• how to share your story to impact change in the community
• how to be an effective leader and patient advocate
-
Karol, what would you recommend doing to get local news coverage (paper or otherwise) on my story and organ donation in general? Do I simply just start sending them e-mails?
I would like to do these things • how to contact and write for local media and industry publications
• how to share your story to impact change in the community
• how to be an effective leader and patient advocate
This is from Living Donors Online: You might make an appeal through local mass media, such as newspapers, radio, and television, or the Internet. Doing so gets the word out to a large number of people. However, be aware that many transplant centers in the US don't allow donation by someone who was identified through mass appeals. Policies vary, so check with your transplant center before starting a mass appeal effort of your own.
I will post more info tomorrow.
-
To learn more about how Renal Support Network (RSN) is continuing its tradition of educating kidney patients and their families, of providing hope for a better tomorrow, and of inspiring patients to achieve their dreams go to http://www.rsnhope.org
And next time you have a chance to go to one of their conferences - do it!
That conference sounds incredible! :thumbup; But, damn, there was one just in my area LAST month! I just missed it! >:(
-
IHD is getting larger and larger and I hope that one day as a group we can get things done.
-
Zach, please remind me which of those state-capitalist, pseudo-fascist, imperialistic, totalitarian regimes which happened to fly red flags were genuinely Marxist?
I agree though that there has been some progress over the years in the West in terms of the public policy treatment of renal patients. But keep in mind though that before Congress decided to start Medicare funding for dialysis patients in 1972, people were dying from the disease just for lack of money -- which was a glaringly strange thing for the richest nation on earth to permit when other, much less wealthy nations were funding dialysis for their own citizens. But then what happened? As soon as the first bills for dialysis treatment started coming in, the next Congress tried to stop the dialysis funding program on the grounds that it had turned out to be too expensive! Can you imagine what these monsters in Congress were prepared to do, turning off the lights in dialysis centers and sending the patients away to die just to keep the tax rates low?
I think getting any major change in dialysis policy in the U.S. now is probably impossible, since the general political trend is to cut back dialysis treatment if possible to cut government expenditures.
-
Once again, there seems to be selective memory loss of your medical history knowledge.
First of all, much of the contributions to the National Kidney Foundation back then went to something quite important: kidney transplant research.
Then, in the early 1970's, NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP) joined with others in the renal community to fight for the enactment of the Medicare ESRD Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s aakpRENALIFE) to keep everyone informed.
One of the most memorable testimonies came from a patient while hooked up to a dialysis machine in the hearing room!
It was October of 1971, when Shep Glazer, then Vice President of NAPH, testified before the House Ways and Means Committee while attached to a dialysis machine. Shep's appearance and testimony, along with many other dedicated individuals, in front of this influential Congressional committee helped to significantly raise the awareness of end-stage renal disease and set the stage for a landmark piece of legislation.
Shortly after these Congressional hearings, Congress approved the legislation that led to the implementation of the Medicare ESRD Program. It provided federal funding for those patients who required dialysis due to end-stage renal disease. It remains one of the most significant developments in the history of the treatment of ESRD in the United States.
Perhaps you'd be interested in the whole story of what happened on that November day (interesting that the aakp always refers to Glazer's Congressional treatment occurring in 1972). The back story of the Shep Glazer myth. From Biomedical Politics (1991) Institute of Medicine (IOM) http://books.nap.edu/openbook.php?record_id=1793&page=187 (By the way when directly cut and pasting text one should provide the source so that people can evaluate the text in light of the source - for instance is it self-serving.)
Ways and Means: November and December 1971
The House Ways and Means Committee, as part of its hearings on national health insurance, devoted the end of the morning of November 4, 1971, to testimony about ESRD (U.S. Congress, House, Committee on Ways and Means, 1971c). It particular, it heard from representatives of the National Association of Patients on Hemodialysis (NAPH). These included Shep Glazer, vice president of the group and a dialysis patient from New York; William Litchfield, a dialysis patient from Houston; Roland Fortier, an NAPH member from Connecticut; Peter Lundin, a medical school student who was also a dialysis patient and NAPH member from California; June Crowley, a dialysis patient from New York; and Abraham Holtz, a dialysis patient from New York.
Glazer made an official statement for NAPH, and then spoke about his personal situation:
I am 43 years old, married for 20 years, with two children ages 14 and 10. I was a salesman until a couple of months ago until it became necessary for me to supplement my income to pay for the dialysis supplies. I tried to sell a non-competitive line, was found out, and was fired. Gentlemen, what should I do? End it all and die? Sell my house for which I worked so hard, and go on welfare? Should I go into the hospital under my hospitalization policy, then I cannot work? Please tell me. If your kidneys failed tomorrow, wouldn't you want the opportunity to live? Wouldn't you want to see your children grow up? (U.S. Congress, House, Committee on Ways and Means, 1971b)
The most dramatic moment of the hearing, however, came when Glazer was briefly dialyzed before the committee. This event was widely publicized afterwards and was believed by many to have been decisive in the decision of Congress to enact the kidney disease entitlement.
In fact, great ambivalence surrounded this dialysis “session.” The hearing record, for example, mentions only that a dialysis machine was brought to the hearing room but not that Glazer was dialyzed (U.S. Congress, House, Committee on Ways and Means, 1971b). The session had been arranged by Glazer and Ways and Means Chief Counsel John M. Martin, who consulted William Fullerton, the committee staff person for health. Neither was enthusiastic; indeed, Martin was afraid of what might happen if Glazer died in front of the committee. Nor did the other members or their staff think it was especially appropriate. Plante remembers that the senior staff aide to Barber Conable (R-N.Y.), when he saw Glazer being dialyzed, exclaimed “What the f—is going on here?” But the committee had a tradition of hearing anyone who wished to testify, and it chose not to change its rules in this instance.
Glazer, at a New York NAPH press conference on November 3, the day before the hearing, had announced his intention to undergo dialysis before Chairman Mills and the Ways and Means Committee. The National Kidney Foundation opposed the effort—directly in discussions with Glazer and indirectly through Eli Friedman, advisor to NAPH. Schreiner and Plante had been lobbying Congress assiduously, seeking support for kidney treatment programs from all sources—the tax committees, the health legislative committees, and the appropriations committees. They feared that an accident would cancel all the progress they had made, and Schreiner stressed this possibility when he tried to dissuade Glazer from dialyzing before the committee. Given these activities, Schreiner's incredulity was all the greater when he received a telephone call at home on the evening before the hearing. Glazer had arrived in Washington, D.C., from New York, and was calling to ask Schreiner if a Georgetown University dialysis machine could be brought to the hearing room the next morning for use at that time (Institute of Medicine, 1989). Schreiner, suppressing his anger, trucked a machine over to the Longworth House Office Building on Capitol Hill. Barred from attending the hearing by the National Kidney Foundation, which did not wish him to lend its prestige to the event, he sent a Georgetown nephrology fellow, James Carey, to act as attending physician. If any untoward event occurred, Carey was instructed by Schreiner to clamp the blood lines, turn off the machine, and declare that the dialysis session was over.
Several years later, Carey disclosed to Schreiner that Glazer had gone into ventricular tachycardia during the dialysis session before the committee. Carey had immediately clamped the lines. The “treatment” was very short, perhaps five minutes in all, long enough to open the blood lines but hardly a dialysis session. Nevertheless, the few members of the committee who were present characterized the episode as “excellent testimony.” They were thinking broadly about national health insurance at the time, however, not about doing something special for dialysis patients. Indeed, Fullerton recalls that a parent of a child with hemophilia made a far greater impression on the committee. The national press, on the other hand, had been handed a dramatic story and publicized it widely. The myth that Glazer's treatment had been decisive in the decision by Congress to enact Section 299I had been established.
Read the whole chapter to understand what actually got the legislation passed and the political environment it happened under. Relevant to this thread it was a very different world in 1971 but it should be noted that legislation to cover dialysis was introduced every year from 1965 onward. Political change takes hard work.
-
Wow that must have been a powerful exhibition - I cannot imagine someone being able to do that today.
-
Wow that must have been a powerful exhibition - I cannot imagine someone being able to do that today.
It'd be a lot safer/easier today with a NxStage System One - but the issue has changed. Congress knows what dialysis is, knows it is not experimental, knows it works - they just don't want to pay for it. Oh wait ... I guess the issue hasn't changed.
-
:bump; I am happy to have found this thread.
You are an IHD gem Karol. Thanks for all the good work you do to keep us engaged in the important discussions.