By Bill Peckham
Mark over at Nephrology News & Issues NephrOnline blog shares his memories of Kris Robinson, long time Executive Director of the AAKP, whose death was announced yesterday. I met Mark and Kris for the first time at the same event - the 1997 AAKP convention in Phoenix. During these first years of the internet - or at least the first years of the internet's wide public use - there was actually a broader range of interaction than there is now. The way I remember it (though I have to say I do not fully trust my memory any more) there was a period when Mark and Kris were members of the Dialysis_Support listserv (D_S). It seemed like anything was possible at that 1997 convention, that the future of dialysis advocacy looked bright. We were looking forward to a renaissance of patient involvement.
Back they there were dialyzor giants involved. People like Dale Ester and Dr. Peter Lundin active in the AAKP, co-founders of D_S, who remembered the early days of dialysis advocacy, the early days of the AAKP when it was called the National Association of Patients on Hemodialysis. He and others remembered back when there was greater patient involvement. And back when patient advocacy was dramatic and aggressive. From page 187 of Biomedical Politics by Kathi E. Hanna:
The House Ways and Means Committee, as part of
its hearings on national health insurance, devoted the end of the
morning of November 4, 1971, to testimony about ESRD (U.S. Congress,
House, Committee on Ways and Means, 1971c). It particular, it heard
from representatives of the National Association of Patients on
Hemodialysis (NAPH). These included Shep Glazer, vice president of the
group and a dialysis patient from New York; William Litchfield, a
dialysis patient from Houston; Roland Fortier, an NAPH member from
Connecticut; Peter Lundin, a medical school student who was also a
dialysis patient and NAPH member from California; June Crowley, a
dialysis patient from New York; and Abraham Holtz, a dialysis patient
from New York.
Glazer made an official statement for NAPH, and then spoke about his personal situation:
I am 43 years old, married for 20 years, with two children ages 14 and 10. I was a salesman until a couple of months ago until it became necessary for me to supplement my income to pay for the dialysis supplies. I tried to sell a non-competitive line, was found out, and was fired. Gentlemen, what should I do? End it all and die? Sell my house for which I worked so hard, and go on welfare? Should I go into the hospital under my hospitalization policy, then I cannot work? Please tell me. If your kidneys failed tomorrow, wouldn't you want the opportunity to live? Wouldn't you want to see your children grow up? (U.S. Congress, House, Committee on Ways and Means, 1971b)
The most dramatic moment of the hearing, however, came when Glazer was
briefly dialyzed before the committee. This event was widely publicized
afterwards and was believed by many to have been decisive in the
decision of Congress to enact the kidney disease entitlement.
This is the Creation Story of the AAKP, a story about a time when there were giants among us. Giants who could move Congress to action. (Reading the rest of Hanna's account makes clear that the whole story is more complicated but that is always true of creation myths.)
The time after the kidney disease entitlement was enacted is remembered as a golden age of patients on hemodialysis advocacy engagement. Never has the community been more energized then during the period after the success of Glazer, Lundin, et al. In 1997 I left Phoenix thinking that we'd get back to the level of engagement with the patient community that was seen in the '70s. The internet would connect us and allow the unified effort that was needed in order that patients would again find themselves at the center of the discussion in Washington.
It didn't happen. The patients have engaged with one another but the discussion is largely amongst ourselves. But for a few brave nephrologist and staff (Agar gets a gold star) few have ventured into two way discussions with those on the sharp end of the needle. There are ongoing efforts but not what we thought was possible in 1997 or what I believe is possible today.
Maybe if Kris had been able to write the articles she and Mark had been discussing:
a series of articles on the
role of associations, both patient and professional, and their impact
on dialysis care. She wrote, "There is much that is often not discussed
in the renal community and it might be neat to write more of a front
line, 18-year experience piece or pieces on the changes, growth, etc.
we have seen
If Kris had had time to write those articles we might know the answer to a number of questions. As Mark wrote the AAKP under Kris's leadership was about "helping
patients learn about themselves". Education not aggressive advocacy. What was it that kept the AAKP on an apolitical course for so many years? It would have been very interesting to have read Kris's reflections. What roads would Kris say she left untraveled? What roads has the AAKP left untraveled?
It is hard to make sense of Kris's last weeks. Was she pursuing other opportunities, "moving on career wise" as she wrote to Mark? Leaving the renal field. Or was illness forcing her to take herself away from the community that was the focus of her life for 18 years? Kris touched so many lives over the years it would have been nice if she had had time to debrief her experience before she left us but tomorrow is never promised.
What does medical advocacy mean in a time of corporate medicine and government payers? It's an open question we've been left to answer for ourselves.
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