When historians of medicine introduce students to the transformation of acute, life-threatening, often terminal illness into long-term, manageable, chronic illness – a major aspect of 20th-century medicine – they immediately turn to diabetes. There is Diabetes B.I. (diabetes before insulin) and diabetes in the Common Era, i.e., Diabetes A.I. (diabetes after insulin). Before Frederick Banting, who knew next to nothing about the complex pathophysiology of diabetes, isolated insulin in his Toronto laboratory in 1922, juvenile diabetes was a death sentence; its young victims were consigned to starvation diets and early deaths. Now, in the Common Era, young diabetics grow into mature diabetics and type II diabetics live to become old diabetics. Life-long management of what has become a chronic disease will take them through a dizzying array of testing supplies, meters, pumps, and short- and long-term insulins. It will also put them at risk for the onerous sequelae of long-term diabetes: kidney failure, neuropathy, retinopathy, and amputation of lower extremities. Of course all the associated conditions of adult diabetes can be managed more or less well, with their own technologically driven treatments (e.g., hemodialysis for kidney failure) and long-term medications.
The chronicity of diabetes is both a blessing and curse. Chris Feudtner, the author of the outstanding study of its transformation, characterizes it as a “cyclical transmuted disease” that no longer has a stable “natural” history. “Defying any simple synopsis,” he writes, “the metamorphosis of diabetes wrought by insulin, like a Greek myth of rebirth turned ironic and macabre, has led patients to fates both blessed and baleful.” He simply means that what he terms the “miraculous therapy” of insulin only prolongs life at the expense of serious long-term problems that did not exist, that could not exist, before the availability of insulin. So depending on the patient, insulin signifies a partial victory or a foredoomed victory, but even in the best of cases, to borrow the title of Feudtner’s book, a victory that is “bittersweet.”
It is the same story whenever new technologies and new medications override an otherwise grim prognosis. Beginning in the early 1930s, we put polio patients (many of whom were kids) with paralyzed intercostal muscles of the diaphragm into the newly invented Iron Lung. The machine’s electrically driven blowers created negative pressure inside the tank that made the kids breathe. They could relax and stop struggling for air, though they required intensive, around-the-clock nursing care. Many survived but spent months or years, occasionally even lifetimes, in Iron Lungs. Most regained enough lung capacity to leave their steel tombs (or were they nurturing wombs?) and graduated to a panoply of mechanical polio aids: wheelchairs, braces, and crutches galore. An industry of rehab facilities (like FDR’s fabled Warm Springs Resort in Georgia) sprouted up to help patients regain as much function as possible.
Beginning in 1941, the National Foundation for Infantile Paralysis (NFIP), founded by FDR and his friend Basil O’Connor in 1937, footed the bill for the manufacture of Iron Lungs and then distributed them via regional centers to communities where they were needed. The Lungs, it turned out, were foundation-affordable devices, and it was unseemly, even Un-American, to worry about the cost of hospitalization and nursing care for the predominantly young, middle-class white patients who temporarily resided in them, still less about the costs of post-Iron Lung mechanical appliances and rehab personnel that helped get them back on their feet. To be sure, African American polio victims were unwelcome at tony resort-like facilities like Warm Springs, but the NFIP, awash in largesse, made a grant of $161,350 to Tuskegee Institute’s Hospital so that it could build and equip its own 35-bed “infantile paralysis center for Negroes.”
Things got financially dicey for the NFIP only when Iron Lung success stories, disseminated through print media, led to overuse. Parents read the stories and implored doctors to give their stricken children the benefit of this life-saving invention – even when their children had a form of polio (usually bulbar polio) in the face of which the mechanical marvel was useless. And what pediatrician, moved by the desperation of loving parents beholding a child gasping for breath, would deny them the small peace afforded by use of the machine and the around-the-clock nursing care it entailed?
The cost of medical progress is rarely the cost of this or that technology for this or that disease. No, the cost corresponds to cascading “chronicities” that pull multiple technologies and treatment regimens into one gigantic flow. We see this development clearly in the development and refinement of hemodialysis for kidney failure. Dialysis machines only became life-extenders in 1960, when Belding Scribner, working at the University of Washington Medical School, perfected the design of a surgically implanted Teflon cannula and shunt through which the machine’s tubing could be attached, week after week, month after month, year after year. But throughout the 60s, dialysis machines were in such short supply that treatment had to be rationed: Local medical societies and medical centers formed “Who Shall Live” committees to decide who would receive dialysis and who not. Public uproar followed, fanned by the newly formed National Association of Patients on Hemodialysis, most of whose members, be it noted, were white, educated, professional men.
In 1972, Congress responded to the pressure and decided to fund all treatment for end-stage renal disease (ESRD) through Section 2991 of the Social Security Act. Dialysis, after all, was envisioned as long-term treatment for only a handful of appropriate patients, and in 1973 only 10,000 people received the treatment at a government cost of $229 million. But things did not go as planned. In 1990, the 10,000 had grown to 150,000 and their treatment cost the government $3 billion. And in 2011, the 150,000 had grown to 400,000 people and drained the Social Security Fund of $20 billion.
What happened? Medical progress happened. Dialysis technology was not static; it was refined and became available to sicker, more debilitated patients who encompassed an ever-broadening socioeconomic swath of the population with ESRD. Improved cardiac care, drawing on its own innovative technologies, enabled cardiac patients to live long enough to go into kidney failure and receive dialysis. Ditto for diabetes, where improved long-term management extended the diabetic lifespan to the stage of kidney failure and dialysis. The result: Dialysis became mainstream and its costs spiraled onward and upward. A second booster engine propelled dialysis-related healthcare costs still higher, as ESRD patients now lived long enough to become cardiac patients and/or insulin-dependent diabetics, with the costs attendant to managing those chronic conditions.
With the shift to chronic disease, the historian Charles Rosenberg has observed, “we no longer die of old age but of a chronic disease that has been managed for years or decades and runs its course.” To which I add a critical proviso: Chronic disease rarely runs its course in glorious pathophysiological isolation. All but inevitably, it pulls other chronic diseases into the running. Newly emergent chronic disease is collateral damage attendant to chronic disease long-established and well-managed. Chronicities cluster; discrete treatment technologies leach together; medication needs multiply.
This claim does not minimize the inordinate impact – physical, emotional, and financial – of a single disease. Look at AIDS/HIV, a “single” entity that brings into its orbit all the derivative illnesses associated with “wasting disease.” But the larger historical dynamic is at work even with AIDS. If you live with the retrovirus, you are at much greater risk of contracting TB, since the very immune cells destroyed by the virus enable the body to fight the TB bacterium. So we behold a resurgence of TB, especially in developing nations, because of HIV infection. And because AIDS/HIV is increasingly a chronic condition, we need to treat disproportionate numbers of HIV-infected patients for TB. They have become AIDS/HIV patients and TB patients. Worldwide, TB is the leading cause of death among persons with HIV infection.
Here in microcosm is one aspect of our health care crisis. Viewed historically, it is a crisis of success that corresponds to a superabundance of long-term multi-disease management tools and ever-increasing clinical skill in devising and implementing complicated multidrug regimens. We cannot escape the crisis brought on by these developments, nor should we want to. The crisis, after all, is the financial result of a century and a half of life-extending medical progress. We cannot go backwards. How then do we go forward? The key rests in the qualifier one aspect. American health care is organismic; it is a huge octopus with specialized tentacles that simultaneously sustain and toxify different levels of the system. To remediate the financial crisis we must range across these levels in search of more radical systemic solutions.
C. Feudtner, Bittersweet: Diabetes, Insulin, and the Transformation of Illness (Chapel Hill: University of North Carolina Press, 2003), p. 36.
 My remarks on the development and impact of the Iron Lung and homodialysis, respectively, lean on D. J. Rothman, Beginnings Count: The Technological Imperative in American Health Care (NY: Oxford University Press, 1997). For an unsettling account of the historical circumstances and market forces that have undermined the promise of dialysis in America, see Robin Fields, “’God help you. You’re on dialysis’,” The Atlantic, 306:82-92, December, 2010. The article is online at http://www.theatlantic.com/magazine/archive/2010/12/-8220-god-help-you-you-39-re-on-dialysis-8221/8308/.
 L. M. Dunphy, “’The Steel Cocoon’: Tales of the Nurses and Patients of the Iron Lung, 1929-1955,” Nursing History Review, 9:3-33, 2001.
 D. J. Wilson, “Braces, Wheelchairs, and Iron Lungs: The Paralyzed Body and the Machinery of Rehabilitation in the Polio Epidemics,” Journal of Medical Humanities, 26:173-190, 2005.
 See S. E. Mawdsley, “’Dancing on Eggs’: Charles H. Bynum, Racial Politics, and the National Foundation for Infantile Paralysis, 1938-1954,” Bull. Hist. Med., 84:217-247, 2010.
 C. Rosenberg, “The Art of Medicine: Managed Fear,” Lancet, 373:802-803, 2009. Quoted at p. 803.
 F. Ryan, The Forgotten Plague: How the Battle Against Tuberculosis was Won and Lost (Boston: Little, Brown, 1992), pp. 395-398, 401, 417.
Copyright © 2012 by Paul E. Stepansky. All rights reserved.