By Brian Steele-Sierk
In the Early 1970's type 1 diabetes care and stage 5 chronic kidney disease (CKD5) care in the United States were very similar. Both used infrequent therapies (1 insulin shot per day, 3X4 in center hemodialysis), monthly blood chemistry tests (indirectly, in the case of urine glucose sampling), and both carried an expectation of severe long term complications. In the intervening decade, diabetes care and outcomes have changed and advanced rapidly, to the point where University of Washington Researcher Dr. Irl Hirsch can say "people diagnosed with Type 1 diabetes today will not have to deal with significant complications later in life."
The same can in no way be said about people today receiving a CKD5 diagnosis. The vast majority will suffer from and die from complications arising from insufficient dialysis resulting in poor control of the disease.
I am a type 1 diabetic, as is my father, brother, and daughter. My father and I are also CKD5 patients as a result of our diabetes. He received a Simultaneous Kidney/Pancreas transplant in 1995, and I am currently dialyzing with the NxStage System One at home, doing extended daily home hemodialysis. I have seen firsthand the development in diabetes care from the early 80's to the present. I have also seen a lack of significant development in the care of CKD5 in the same time frame. I can't speak definitively as to the causes of the disparity in development, but I think there are some things that Dialysis can learn from Diabetes.
First, diabetes therapy has sought to more closely mimic the natural processes that it seeks to replicate. Natural insulin is released at a low level constantly, and at greater quantities (a bolus) when triggered by ingestion of carbohydrates. Insulin therapy has gone from one shot a day to multiple shots of differing insulin that have different medication profiles, to wearable pumps that constantly infuse insulin. The huge majority of dialyzors are still stuck on a 3x4 incenter hemodialysis regime that is as far from natural kidney function as you can get while not being dead. Extended home hemodialysis is much closer to natural function than 3x4 incenter, but has a miniscule adoption rate, and is still viewed as experimental by many in the field.
Second, the external feedback loop in diabetes therapy has gotten much smaller. Glucose testing has gone from monthly urine collection, to daily urine collection, to daily strip testing, to daily digital monitoring, to constant glucose monitoring.The testing in CKD5 care is still on a monthly basis. This is in spite of the fact that potassium, sodium and urea levels vary widely based on diet activity, dialysis prescription, etc. Care will improve when we as dialyzors can know that we are hypo- or hyper-kalemic instead of just guessing or suspecting that we are.
Third, the expectation of caregivers must change. When my daughter was diagnosed with Type 1 diabetes in 2008, the expectation was there that she would test 5-6 times a day, and that she would prepare to get a pump, and maybe a constant glucose monitor. When I was in the hospital for kidney failure, I was told that I would dialyze 3 days a week, even though my nephrologist and technicians giving me dialysis were aware of home hemodialysis. It is true that many type 1 diabetics are non compliant patients, and do not seek the top level of care available to them. However, the top level of care is seen as the goal, and non compliance, while possibly the norm, is labeled as such. In treating severe kidney disease, those that seek daily, nocturnal home dialysis are seen as outliers, and people getting 3x4 hemo in center, which we know is insufficient, are seen as the norm.Here's to hoping that technology can make this discussion obsolete. Until then we need to keep pushing for better therapy, tighter feedback, and higher expectations of patients and care.