In 2009 in Boston, Dr. Tom Parker and Dr. Ted Steinman were co-chairs of the "ESRD: State of the Art and Charting the Challenges for the Future" conference (summarized here).
The Boston conference, as it became known, reported that
- >20% of individuals treated for end-stage renal disease die each year
- >70% die after five years
- Mortality can be as high as 40% in the first year of dialysis
- Total costs for treating ESRD patients are approaching $34 billion a year; annual costs per patient are $60,000 to $80,000. Arteriovenous (AV) access choice has the greatest impact on the range.
- $20,000 per patient per year (PPPY) is spent on hospitalization, mostly due to cardiovascular disease and infection
- <20% of patients get rehabilitated; returning to jobs, volunteer work, etc.
Parker and Steinman write: “We believe that the season is right for change. Momentum has begun. The patients, nephrologists, nurses, caretakers, dialysis providers are increasingly acknowledging that we will no longer accept mediocre outcomes. Together, at the grassroots, we impatiently are demanding better care.”
Tom Parker and Ted Steinman implored Medicare to lead a change in dialysis care. One of the suggestions that the steering committee for the Boston meeting made was: “Spend less time on traditional clinical outcomes measurements that may only account for a small percentage of the morbidity and mortality differences.” Medicare doesn’t seem to have listened given the evidence from the proposed 2014 QIP. Another was “Assess the dialysis prescription beyond the current Kt/V formula, with emphasis of more dialysis treatment time per week.” Not much change there.
In a recent article in the Prospect magazine John Campbell a biographer of Margaret Thatcher talks about Mrs. Thatcher’s leadership. He writes: “What she did have … was an essential clarity of purpose. She did not know exactly how, or whether she was going to get there, but she knew the direction she wanted to advance.”
In the evolution of dialysis from a small “cottage industry” in the Merrill and Scribner era of the 1960s and 1970s to the mega business it has become in the current era, we have lost the clarity of purpose that Campbell talks of and that Merrill and Scribner exemplified. These two individuals were the fathers of dialysis. Today it seems that dialysis patients in the US, and others elsewhere, are subject to the whims of corporatism and the casino capitalism of the large dialysis organizations (LDOs).
I have no idea whether the comments to my recent articles on dialysis reflect the view of a very small sliver of the dialysis population, or whether they are shared more broadly. Still, what comes across loudly is that there is tremendous dissatisfaction with the current state of dialysis care. That we have lost our way.
Given the very limited progress from the Boston conference nearly 3 years ago, the point is that there is no point in asking: "are we there yet?", when we don't have the clarity of purpose to know where we are heading. Of course the answer is "No".