Back in August, I asked online for people to share with me their experience as medical patients, especially those with kidney complications, so that I could go to a meeting armed with information that my own experience did not provide. Thank you to those who shared with me. I’m doing this blog post (sorry it’s so late) to fulfill a promise to one of them that I report back on the meeting.

It was a gathering of scientists, doctors, ethicists, pathologists, software developers and patients — yes, patients — who make up the Kidney Precision Medicine Project.

My experience as a kidney patient is very limited, especially compared to others who attended the August meeting in Bethesda, MD. I spent maybe a week on dialysis in 1990 after my kidneys stopped working after ACL replacement surgery and a pulmonary embolism. Fortunately, that was enough to remind my kidneys how to do their work and they returned to the task.

Others have not been so fortunate. One patient at the meeting had had four kidney transplants, another two. A young father of three children is “pre-transplant” and hopes to be there for his children in 20 years.

The KPMP is best defined on the home page of its website at KPMP.org:

“The Kidney Precision Medicine Project (KPMP) is focused on finding new ways to treat acute kidney injury (AKI) and chronic kidney disease (CKD). We will be obtaining kidney tissues from individuals volunteering to participate in KPMP. The renal tissue will be analyzed in an effort to redefine kidney disease in molecular terms and identify novel targeted therapies. The network will develop state-of-the-art methods to obtain and analyze these biopsies, linking information on cellular programs with kidney structure. We are also developing the next generation of software tools to visualize and understand the various components of these devastating diseases.”

Let’s start with my confession that I perked up during the two-day meeting when someone spoke in common language, dropping out of science/doctor talk and descending to something I could understand and identify with. I can’t deliver a critique or even a surface skim of any of the technical sessions at the conference. What you are getting here is a browse through the notes I took during those two days and what made an impression on me. Any technical errors are mine alone.

I liked the image Dr. Robert Star, director of the Division of Kidney, Urologic, and Hematologic Diseases at the National Institute of Health, used in opening the meeting: Think of AKI and CKD as two dark clouds above us. Kidney dialysis, developed back in the 1960s, lifted us toward breaking up those clouds, but we haven’t advanced much through the white space between us and those two clouds since then. Dialysis can do the work of kidneys but not cure the disease affecting them. Medical science has been stuck on Mount Dialysis for a very long time.

Star said the white space between dialysis and the two dark clouds can be viewed as an opportunity to understand and treat kidney disease – or as a depressing gap we’ll never overcome.

Obviously, the folks at KPMP see it as an opportunity to confront a condition that can put up some alarming statistics:

• 14 percent of the general population has CKD;
• Almost half of individuals with CKD also have diabetes or cardiovascular disease;
• More than 661,000 Americans have kidney failure with 468,000 of them on dialysis and 193,000 living with a functioning kidney transplant;
• End-stage renal disease (ESRD) is 3.7 times more prevalent among African Americans than Caucasians, 1.4 times for Native Americans and 1.5 for Asian Americans.

Here’s another statistic cited by Richard Knight, vice president of the American Association of Kidney Patients: 60 percent of dialysis patients go there from the emergency room, unaware that they had the “silent killer” until their failing kidney function put them in a dire situation.

Knight’s kidney function was down to 12 percent when protein was found in his urine during a test taken for another procedure. From there, he went on to dialysis and a transplant.

If there was a general health take-away from this meeting that I would pass on to others, it’s this: Find out if routine medical tests you are given include creatinine levels and glomerular filtration rates (GFR). Those are indications of how well your kidneys are working. It’s worth having a face-to-face talk with your general practitioner about what your numbers mean.

Much of the scientific and ethical discussions at the meeting involved that part of the mission statement about “obtaining kidney tissues from individuals volunteering to participate.”

The tissue would come from “research biopsies.” A “clinical biopsy” is one taken to see if your kidney is damaged, and what sick person wouldn’t want that done if it could help them get better?

But would you volunteer to help KPMP build an atlas of the human kidney? It could some day lead to treatments and maybe a cure, but you would be at a small risk for bleeding and an even smaller one for infection. There might be some pain and/or bruising.

Then there is the question of whether you would want to know if something “bad” turned up from your non-clinical biopsy. Or what if new technology came along later that showed you had markers for disease in your future? Want them to call you? What if there were no cure for that disease?

While I can’t say I have answers for these questions even in my own hypothetical case, at least I can begin to grapple with the issues at hand. Not so the questions raised and discussed about tissue preservation and sharing, making it digitally available to all the collection sites and research facilities, about omics, ontologies, phenotypes, heterogeneity and lots of other big words representing big research areas to be explored by this team of innovators from many fields and places, including the University of Washington.

Once again, thanks to those who shared your patient experiences with me. Without them, I would have been even more lost in renal realities than I was.

While I may not have the science background to explain every scientific nuance discussed at the August meeting, I can report to you that, in the words of one presenter, KPMP is “team science putting together many disciplines to create and disseminate knowledge” that may one day eliminate kidney disease.

And our work, even as patients at KPMP, continues as a “marathon, not a sprint,” in the words of Dr. Jonathan Himmelfarb, head of the “central hub” at the UW for this project.

Further reading:

http://www.theworldin.com/edition/2017/article/12775/medicine-gets-personal

https://clinicaltrials.gov/ct2/results?cond=Kidney+Diseases&cntry1=NA%3AUS