Back when I was hot to finish the development of my artificial kidney, a group of patients at Kings County Hospital got together and started one of the very first advocacy groups for folks with a disease. The National Association of Patients on Hemodialysis. From those 6 patients in 1969, who were undergoing dialysis thrice weekly for 12 to 18 hours at a clip (digest that fact for a minute), they involved other patients looking to brainstorm and seek out better alternatives- and changed their name to the American Association of Kidney Patients (AAKP).
I remember in the early days (1970’s and 1980’s), when hospitals and clinics began offering dialysis services, meeting with members of the AAKP. They were also frequent exhibitors and contributors at our technical meetings. (The American Society of Nephrology [ASN], American Society for Artificial Internal Organs [ASAIO], and American Nephrology Nurses Association [ANNA]. ) The AAKP were also members of our committee to develop standards for dialysis and dialysates. (The FDA eventually endorsed the standards we developed.)
Well, the AAKP is continuing that tradition. They’ve elected to associate with the Kidney Project. The device developed by Shuvo Roy, PhD (UC San Francisco), which I’ve discussed many times on this blog. (Here’s the first instance- but you can find the others by searching for Shuvo in my index.)
t
The Kidney Project is now under Roy’s and Dr. William Fissell’s (Vanderbilt) direction. The goal is to develop an implantable artificial kidney. (We worked on such a concept, first reported to the AIChE (American Institute of Chemical Engineers) in 1977 and updated the results in 1979 to the American Society of Artificial Internal Organs. We abandoned it, considering that stem cells would be a much better alternative- except their use was outlawed a few years later.)
Sure, transplanting a kidney usually provides better patient results than dialysis, but the number of folks donating kidneys falls woefully short of the demand. And, as I mentioned above, our country disallows the use of pure stem cells, so a bioengineered stem cell kidney that would obviate the need for rejection drugs (as required by transplanted kidneys) is not in the offing.
So, we are stuck with chemical (and biochemical) engineering devices to bring relief to those afflicted with kidney failure. (Diabetes and high blood pressure are among the two leading precursors to kidney failure- given the obesity epidemic, the numbers of folks on dialysis only increases each year.)
What can the AAKP do to help the research and development of the implantable kidney substitute? With their extensive contacts among patients, they can discern patient preferences, risk tolerance, and perception issues for the wearable/implantable devices. After all, if Roy’s device finally breaks out of the prototype and test phase, it will mean millions of patients won’t have to undergo thrice weekly dialysis, losing 12 to 18 hours a week from their lives. It should also mean the restrictive diets (that’s both food AND drink) may become much less so.
One can only hope.
Oh, and let’s hope someone (or someones) finds a way to get the stem cell research and utilization restrictions lifted.
One can only hope the advances come sooner rather than later. I have a family member with PKD although it may never progress that far with him.
I hope the better solution arrives long before your family members needs that solution, Alana!
This would be such a monumental breakthrough, I was watching a human interest piece on the news last night in Australia, where the mother of a one punch victim went to meet the person who had recieved her son’s kidney. He had been on dialysis for most of his life, and had all but given up hope of finding a donor. Completely changed his life. If we could develop a solution that didn’t rely on the death of others that would be incredible to improving the quality of life for such people. Will watch the developments of this with keen interest.
Me, too, Megan. Not only because I was involved in the concepts, but because it’s desperately needed- as you said.
Thanks for the visit and the comment.