I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: Zach on February 04, 2009, 06:09:30 AM
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I knew Kris, but not very well.
She was a good advocate for people on dialysis and those with transplants.
She will be sorely missed.
8)
Kris Robinson: 1964-2008
From Volume , Issue - 2 2009
Nephrology News & Issues
by: Brenda Dyson
Kris Robinson was one of my best friends. Though it was not always an easy relationship, Kris, who died on Nov. 17 at age 44 after a fight with cancer, was intensely loyal, both in her personal life and professional life as the executive director and CEO of the American Association of Kidney Patients (AAKP). She demanded that same level of loyalty in return.
Many of her friends and colleagues, me included, often fell short of her standards. We fought often during my tenure as president, but Kris and I fought the way my sisters and I do. No disagreement could ever undermine our friendship. When we argued, we simply made our points and then carried on as usual.
I first met Kris in 1990 at an AAKP convention, and I really got to know her when I was elected to the Board of Directors in 1996. To say she was passionate about the organization would be an understatement. I love AAKP and I love what it does for kidney patients, but Kris' devotion to the organization was legendary. She protected the purity of AAKP's image and the sanctity of its message like a mother watching over her child. She developed her philosophy of how to run the organization from two of the best presidents AAKP ever had: Peter Lundin, MD, and Joe White. Dr. Lundin taught her about the need to keep the patient's voice separate from corporate and pharmaceutical rumblings in the renal community and thereby keep it legitimate and meaningful. Joe taught her about the financial world and how to run a viable, successful nonprofit while also maintaining the purity of the patient's message. Under Kris's watch, AAKP simply could not be bought. This did not always make us very popular in the renal community.
AAKP has long been a patient advocacy organization. Shep Glazer, AAKP's vice-president in 1971, famously dialyzed before Congress (although I've heard varying stories as to the exact location and whether the machine was actually turned on), helping to prompt the passage of the provision of the 1972 Omnibus Reconciliation Act allocating payment for dialysis to all patients with end-stage renal disease. My own grandmother died in 1970 at 62 without ever having been offered dialysis as an option. Dr. Lundin, a nephrologist and a dialysis patient, lived through the "God Squads'" selection of patients in the 1960s when resources were scarce. He remembered patients who were turned down for treatment, thereby having had their death warrants signed, and was very protective of this right to dialysis. Dr. Lundin forced Kris and AAKP to focus on quality issues and thought that any increase in dialysis reimbursement should be tied to quality of care. Once, Kris told me that he was afraid that if ESRD became too large a part of the Medicare budget that Congress would either end coverage altogether or that selection criteria would have to be reintroduced and we'd be right back where we started. This refusal of AAKP to support increases in reimbursement (although we always only asked that it be linked to quality and access to care) made some very well respected members of the renal community turn into very vocal critics of AAKP. But, Kris held true to the beliefs that were instilled in her by Joe and Dr. Lundin and by mentors such as Eli Friedman, MD, Chris Blagg, MD, John Bower, MD, Nate Levin, MD, and other old-school renal professionals who have seen where the ESRD Program has been and how far we have come.
Kris Robinson had a profound impact on AAKP and the direction that the organization took. Under her leadership, AAKP has remained true to patients and I believe that we are still the voice of all kidney patients. Kris could smile her way through the most tense of conversations, she could disagree without demeaning, and whether you liked her or not, you had to respect her.
I'll miss our rambling Sunday afternoon conversations, but the renal community will miss her more. No patient advocate has ever been more devoted to a cause and no one has ever been more effective in her mission. Goodbye, Kris. You will not be forgotten.
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Author bio: Ms. Dyson is the Community Outreach Coordinator for ESRD Network 8, which covers Mississippi, Alabama, and Tennessee. She served on the Board of the American Association of Kidney Patients from 1996 until 2008, including six years as president.
http://nephronline.com/article.asp?IndexID=129
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Inmteresting and sad story. When I was on dialysis, I never heard of the AAKP though, just the NKF.
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R.I.P. Kris