Today marks three weeks since transplant. It seems that this is the magic number – I am feeling 100% better than this time last week. Labs today were really good – Creatinine was 1.12. Brutus is a champ! Blood count is still pretty low at 28. As Sarah mentioned I also celebrated by getting my staples out, which feels amazing. The incision looks good although still needs some time to heal. I got my third infusion of eculizumab, one more to go, and a treatment of inhaled pentamidine to prevent a type of pneumonia called PCP that I am at risk for because of the immune suppression.
In giving me her kidney, Sarah has literally and figuratively saved my life by allowing me to live free of dialysis. The United States spends more on dialysis than any other nation in the world, yet has the highest mortality rate. About one in five individuals on dialysis (20%) die per year. Why is this? Part of the reason may be the poor care that is delivered in many, if not most dialysis centers. There was an article published a few days ago based on an investigation by The Atlantic Monthly and ProPublica, an investigative news organization. The full report can be found at http://www.propublica.org/topic/diagnosing-dialysis. They reported on an investigation on the cleanliness and safety of dialysis centers. The results were not good.
In 1972, Congress changed the Social Security Act to cover treatment of End Stage Renal Disease (ESRD). Dialysis (and kidney transplants which are also covered) was a new lifesaving technology that was not available to most individuals because of the cost; this change was intended to make it available to all. The estimated price tag was $135M for 35,000 patients. Well, they were just a bit off – they surpassed 35,000 patients in 1977. Today the kidney patient population is growing at 3% per year, and is currently at more than 400,000. Six percent of Medicare revenues are spent on ESRD, $20B per year, or more than $77,000 per patient. Universal financing for ESRD patients changed the dynamics of access to dialysis centers and it is now an incredibly profitable industry.
What do we get for our money? The report found that centers are dirty and not well staffed; physician supervision is poor and consolidation in the industry has left patients with few choices of centers or options if they don’t like the place they are being treated. The report further suggests that one of the reasons for the continued poor care and lack of attention is that a disproportionate number of those with ESRD are minorities and the dispossessed. The Centers for Medicare and Medicaid Services (CMS) is supposed to visit and assess dialysis centers once every three years but the report found that almost 1 in 10 had not been checked in five years and more than 250 hadn’t been seen in over seven years. There are two behemoth dialysis providers in the industry. Davita, based here in Denver, and Fresenius, a subsidiary of a German Company. Eighty percent of the 5,000 dialysis centers in the US are for profit and 2/3 are owned by these two companies. Davita is #355 on the Fortune 500 and 2009 profits were $422M. Fresenius is expecting 2010 revenue of $12B and net income of more than $950M.
When I was determined to have ESRD and needed to move to a chronic dialysis center from the Acute Unit at the University of Colorado, I thought long and hard about where I wanted to go. I visited several centers. It was strongly suggested to me that the for profit centers mainly focused on profit as opposed to patient care; I chose to be treated at the Chronic Unit of the University (which was a little spooky since it is the ONLY thing left in the old UCHSC complex at 9th and Colorado). When I first started dialysis there, I wondered where were all the other patients “like me”? I was the only white person there; I was the only person who worked during dialysis. There were one or two others in my age bracket but most were much older. I am very pleased with the care that I received there; I found the center to be clean, the staff well-trained and conscientious, and the ancillary staff – social worker and dietician to be engaged and dedicated to patient care and dignity. The staff was also incredibly flexible allowing me to accommodate both the time that I needed to care for my children and changing to different days some weeks to accommodate my work travel schedule. I feel now that I was very lucky to have this experience – perhaps it was not typical.
The National Quality Forum, which develops quality metrics for the health care system is forming a working group to develop quality standards for ESRD and I have been nominated to be on the panel. It seems clear from this report that developing stringent standards with careful oversight is essential. As with so many things in our health care system, it is unacceptable that we are paying so much and getting so little.