‘Has anyone here … seen my old friend John … ?

That was a line from singer/songwriter Dion in his song, "Abraham, Martin and John." The lyrics talk about the deaths of four great American leaders: Abraham Lincoln, Martin Luthur King, and John and Robert Kennedy.

The renal community could easily put together its own version of Dion's song, highlighting patient advocates over the last three to four years that have passed on: Peter Lundin. Edith Oberley. Kris Robinson, to name a few. And, on August 12 at age 70, John Newmann.

In September, Newmann would have marked 40 years as a renal patient. But like Lundin, Robinson, and others who have advocated for patients, action speaks louder than words. Newmann was an economist for the Ford Foundation in 1971 when his kidneys failed – two years before Congress began the ESRD Program. He had to support a young family and still address his failed kidneys. The late Ernestine Lowrie administered Newmann's first treatment at a National Medical Care clinic on Sept. 30, 1971.

John served as President of the National Association of Patients on Hemodialysis and Transplantation (NAPHT), now the American Association of Kidney Patients, from 1981 to 1984. "Dr. Newmann's death is a great loss to the kidney community…His contributions to AAKP and the kidney community at large will be long remembered," said nephrologist Eli Friedman last week.

John always felt patients needed to understand the political process and the influence they yielded to improve care. During talks, testimony before Congress and in writings, and later in his involvement as a researcher for the Urban Institute, he would use information to push patients to seek a better quality of life. In receiving NN&I's Quality of Life Award in 2001, his nominators said, "What is commendable in his feat is not only the length of time John has survived with ESRD, but also how he has spent this time and what he has accomplished throughout those years."

"He's an economist and thinks about things in a different way," recalled J. Michael Lazarus, Newmann's nephrologist for 15 years, in an interview in 2001. "He would always ask questions about what we did, and the reason for doing it."

And there was a personal side that he was willing to share: John had a successful living donor transplant from his daughter Emily in 1991 that lasted until his death. After a failed cadaveric transplant in July 1987 (he had been on home hemodialysis for 16 years before his first transplant), he had to weigh the risks to his daughter Emily, who offered her kidney.

In a 1994 article in RenalLife, the AAKP news magazine, Newman, Emily and older sister Sara (who also agreed to donate), and ex-wife Mary Newmann talked about the emotional struggles in the testing and final acceptance of Emily's donation. "Living-related donation in the case of our family (divided by divorce) did not come easily," wrote John. "The struggles for everyone were much more intense and prolonged than written here." Then after talking about the wonders of a successfully transplant and his thanks to his daughter, he added, "My years of commitment to patient advocacy and verbally jumping on medical professionals should they not ‘tell it like it is' to patients, in no way diminishes the highest regard and deepest debt I have for those who know and do their work so well, and often with elegance and compassion."

In Dion's song, part of the refrain includes these words: "Didn't you love the things they stood for … didn't they try to find some good for you and me?" Like others before you, John, thank you for what you stood for, and the good you found for us.
 
The Newmann family has set up a memorial fund with the AAKP and the Louis Armstrong House Museum in John’s honor. To contact the AAKP, call 800.749.2257. To donate to the John Newmann Memorial Fund at the Louis Armstrong House Museum, contact Nayelli DiSpaltro at 718.997.3670 or visit www.louisarmstronghouse.org.