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 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?
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.
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
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.orgAnd next time you have a chance to go to one of their conferences - do it!
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.
Ways and Means: November and December 1971The 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.
Wow that must have been a powerful exhibition - I cannot imagine someone being able to do that today.
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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