“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 when 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?”
These were the words of Shep Glazer, then vice president of the National Association of Patients on Hemodialysis (now the American Association of Kidney Patients), testifying before the House Ways and Means Committee about the exorbitant costs of in-home dialysis while being dialyzed. Moments before, Glazer’s wife had hooked him up to a clunky machine, as congressional representatives stared at him with fascination, pity, horror, or some combination of the three.
It was October 1971. On average, dialysis was costing patients like Glazer with end-stage renal disease (ESRD) $25,000 a year and 15+ hours per week in a dialysis center. The majority of these patients needed the treatment because of a genetic condition known as polycystic kidney disease, rather than because they had developed complications from diabetes or hypertension, as more commonly occurs today. (In Glazer’s case, however, kidney damage was caused by rheumatic fever, which developed after a childhood incident of untreated strep throat.) The following year, President Nixon signed legislation making in-home dialysis treatment of ESRD a supplement to Medicare. To this day, ESRD is the only disease to be singled out for federal funding.
Why did Congress move to act on behalf of patients like Glazer? It was (and is) unprecedented for the federal government to intervene no matter how seriously the marketplace has burdened patients.
Medical historians and policy analysts have identified several motivations for Congress’s action. The first and perhaps most obvious is compassion. Who with a heart could not be stirred by Glazer’s plea? He represented the everyday American—a middle-class salesman with a wife and two children—who had the misfortune of being struck with a serious health problem. Lawmakers had only to indulge his thought experiment and imagine themselves in his shoes to be persuaded.
Moreover, these lawmakers had a practical reason to justify their benevolence. Both liberals and conservatives took for granted that some form of national health insurance would be enacted in the next few years, obviating the need for special funding for patients like Glazer. (They were wrong, of course.)
There was also a certain historical backdrop for the legislation. A decade previously, Shana Alexander had published her career-making piece in LIFE magazine, in which she exposed the deliberations of a “God Committee” at a Seattle hospital that had been tasked with deciding who would and would not receive dialysis. The committee, which consisted of a lawyer, minister, banker, housewife, state government official, labor leader, and surgeon, considered factors such as age, sex, marital status, number of dependents, income, net worth, emotional stability, education, occupation, personal references, and church attendance to determine a patient’s qualification for dialysis.
According to Jennifer Nix, a beneficiary of the current Medicare provision, the mere existence of such a committee compelled Congress to take an unprecedented step: “When faced with the stark reality of life-and-death decisions, government chose universal access rather than trying to judge on a case-by-case basis.”
Some, though, have suggested that Congress’s actions were less altruistic.
Medical historian Amr Arafat, for instance, proposes that members of Congress were also thinking about the potential costs savings of such a measure. If not cured, patients like Glazer could at least be treated satisfactorily enough to continue working and contribute to society. In fact, Arafat says, this notion was encouraged by Glazer himself. The man’s demonstration sent the message that a patient with kidney disease could indeed fulfill business as usual; he only needed to be routinely plugged into the machine that washed his organs.
“Glazer’s demonstration also appealed to a certain cultural fantasy, one that is recognizably modern and American. It dangled the promise of technology’s ability to save human lives.”
Glazer’s demonstration also appealed to a certain cultural fantasy, one that is recognizably modern and American. It dangled the promise of technology’s ability to save human lives.
“Chronic dialysis in the United States illustrates the eagerness of its society to embrace high-technology medicine, to buy and use the machine almost at any cost,” Stephen Peitzman explains. Americans, lawmakers, and “even most physicians have found the dramatic dilemma of the identified desperate patient in need of a machine (or transplantation) far more compelling than issues of immunization, prenatal care, paying for antihypertensive drugs, or lack of health insurance.”
In the case of dialysis, technology certainly has the potential to prolong and significantly improve lives. Glazer’s daughter, Lois Glazer Evanter, talked to us about the far-reaching impact of her father’s in-home dialysis and the federal government’s willingness to pay for it: “He got to spend more time with his family, rather than going to a hospital for five hours three times a week.” She fondly recalls that her father set up a ping pong table right next to his machine, so he could occupy himself and engage with loved ones while receiving treatment.
But the treatment was still very burdensome. Because dialysis was so time consuming, Glazer had to reduce his work hours, resulting in less income for the family. His daughter suspects that he may have been demoted a few times, but she wasn’t privy to these details at her young age. Over time, as her father’s disease progressed and his medical needs increased, he scaled back more and more. By age 49, when he died of a heart attack after a recent surgery, he was not working at all.
The regimented treatment (and, of course, her father’s illness) put strains on the marriage, as well. Glazer’s wife was expected to initiate and monitor each dialysis session, but she eventually arranged for a nurse to manage this time-consuming task. “The emotional strain was a lot for her,” Evanter recalls. Because of the stress of this lifestyle, her parents separated for a period of time.
Her mother reported the same to The New York Times back then. She blamed their separation on “this machine, this monster in the home,” adding “there were things I wanted to do as a person that I couldn’t do because I was dialyzing Shep.”
Even today, with improved and more portable technology, dialysis treatment can significantly strain the lives that it prolongs. Some adapt quite well, but others live in agony and would prefer to die rather than to continue treatment.
Dialysis demonstrates how technology can be a “mirage of modern medicine.” It promises to functionally cure, but there are many hidden costs—financial, emotional, and psychological—that tend to be greater than those of traditional therapies. Evanter says that her father worked hard to hide these burdens from his children and to prioritize their needs. She recalls the many times her father stayed up waiting for her when she stayed out late as a teenager. “I would get home, and he would be sitting there in his green chair, and he would ask, ‘Are you okay?’’’ Only when he was assured of such would he go to bed.
As an adult, she realizes how difficult it must have been for him to provide such support when he himself was going through so much. “I was just a typical teenager,” Evanter says, “I didn’t think about anyone else at the time.”
A few years ago, Evanter became curious about her father’s legacy and began to Google him. She came across various blogs, some of which questioned the effects of his testimony. Several individuals claimed that Medicare coverage for in-home dialysis diverted much-needed funds from hospitals and community-based settings. Others expressed outrage that the program still exists today, given that it now consumes 6% of all Medicare spending. Why should the federal government single out ESRD patients among all the vulnerable patient communities, these critics demanded to know.
Evanter doesn’t have answers to these questions, but she is certain of one thing: her father just wanted to improve life for others. “That’s why he went out on a limb and testified. He wasn’t doing it for himself.” By this, she means that he personally would have continued to make his trips to the hospital without complaining; however, he realized the broader need for more convenient and accessible modes of treatment.
And as a result of his testimony, hundreds of thousands of patients have had the option of receiving life-saving dialysis at home.