This morning, I’m attending a Patient Lifestyle Meeting hosted by the Renal Support Network. These meetings are intended for patients with chronic kidney disease (CKD) and their family members. However, I am attending in order to meet some people who are on dialysis to learn more about their daily activities.
The goal of these meeting is to provide encouragement to patients with kidney disease or a kidney transplant. The Renal Support Network website states:
“Any illness—and particularly CKD—is too demanding when you don’t have hope. If people with CKD do not believe they have a future, then the demands placed upon them by dialysis or by the immunosuppressant regimen will prove overwhelming. The goal of the patient lifestyle meeting series is to let patients know that their kidney problems are just that… problems that can be overcome with hope, an eye toward the future, a working knowledge of their disease, and a touch of common sense.”
The meeting is interesting, but not what I expected. It consists of a series of lectures by medical experts and there isn’t an opportunity for me to talk to people on a one-on-one basis. However, I do learn a lot about the history of dialysis technology. I also learn that for the past 50 years Seattle, and the University of Washington Medical Center in particular, has been at the forefront of research and implementation of dialysis treatment. It is also one of the leading places for organ transplants. That reassures me that my experience with my transplant is likely to be safe and successful.
Among the tidbits I learn is that in 1962 the King County Medical Society (located in Seattle) helped open one of the first facilities that allowed hemodialysis to be handled as an outpatient procedure. Since each dialysis treatment lasts for several hours and occurs several times a week, the savings were substantial, though it was still very expensive. The facility, eventually called Northwest Kidney Center was also the first to promote and facilitate home dialysis, which reduces costs even further, and enhances patient outcomes because it allows daily treatment and overnight treatment.
Even though it was no longer considered experimental, insurance companies would not cover dialysis because of the cost. Donations could not cover the cost for all patients who wanted treatment either, so access had to be severely rationed. Thus, an admissions committee was formed. The committee, sometimes called the life and death committee consisted of two doctors who were not nephrologists and five members who were not in the medical field. They examined case logs and decided who would get dialysis and who would not, and thus would die. The workings of the committee are described in Life magazine in 1962 (and is currently portrayed in a play entitled “Who Lives?”). The resulting outcry from the article eventually led Congress in 1972 to pass an amendment to the Medicare rules to cover dialysis and kidney transplants regardless of patient age. Since then, even as Medicare costs have grown rapidly, the proportion of Medicare’s total budget spent on chronic kidney disease has increased and now consumes 6.4% of the budget even though patients with ESRD make up less than 500,000 of the 44 million Medicare beneficiaries.
The history of chronic kidney disease has much to teach us about the current health care reform debate. A more personal story on the impact of federal insurance on kidney disease survival appears in Salon in September.