04/02/2019
Winning the Medal of Excellence is the greatest honor that has ever been bestowed on me because not only is it from patients, but because of what AAKP is all about.
In 1969 dialysis was already an established therapy for kidney failure, but available to just a few. Legislation since 1965 failed to allow comprehensive coverage. I started medical school in 1969, and remember volunteering at the Children’s Hospital in Oklahoma City where after classes we cared for a little four year old boy named Floyd. Floyd was both too young and too poor to qualify for dialysis and died a sad prolonged death as he starved and later hemorrhaged. We were with him when he died, and I promised myself at that time that there would be a better way.
Luckily, a handful of patients at Kings County Hospital in Brooklyn were able to receive dialysis. They organized a group led by Samuel J. Orenstein, an accountant from the Bronx, and banded together during their treatments to share thoughts and ideas with one another, and to organize the National Association of Patients on Hemodialysis. Dialysis was different then; patients dialyzed with Kiil Dialyzers, and in beds. Dialysis lasted 18 hours. They passed around cookies and candy to console one another. After his treatment, Sam would then get on a subway and go to work.
NAPH started with a circular sent to 200 other units around the country. Sam and his fellow patients realized the responsibility for keeping themselves healthy was largely their own. They created NAPHnews, a newsletter, and circulated it to keep up with the legislative, legal and technical aspects of dialysis. They had cookie sales, to raise funds, but more than raising money they raised their voice to what was needed - to represent the interests of dialysis patients to the government. Samuel Orenstein died of heart failure in 1971 after 8 years on dialysis. But other members - William Blackton, Josephine Berman, Peter Lundin, June Crowley, Bill Litchfield in Texas, Shep Glazer and William Cohen continued on. At the time of Sam’s passing, several bills relating to health were being argued by the legislature to expand Medicare. Many legislators wanted to exclude the treatment of patients on dialysis from the new Medicare bill. The surviving members of NAPH would not take no for an answer. Shep Glazer - you will get to meet his daughter at our 50th meeting - told reporters from the Associated Press and United Press International that if dialysis could be performed on the floor of Congress, it could be performed anywhere. His wife, Charlotte, then connected him to a dialysis machine right in the Capitol Ways and Means Committee room while he proclaimed “I want to show the Committee what dialysis is really like. I want them to remember us.” And they did - by the end of 1972 PL 92-603 passed both the House and Senate with Section 2991 to provide comprehensive dialysis coverage, and was signed into law by President Nixon to take effect on July 1, 1973. Dialysis patients were covered because Wilbur Mills, Russell Long and Vance Hartke were able to put a face on dialysis. That face was of a married working man with two teenage children - Shep Glazer.
NAPH grew and contributed to the infrastructure of dialysis we know today. It became NAPHT and then AAKP. It was the pioneers of AAKP working around the country with doctors like Eli Friedman and Belding Scribner and rule makers in HCFA - The Health Care Financing Administration who figured out what would be needed - social workers to help patients return to society, and dietitians to educate on dietary and medication requirements to compensate for the limitations of dialysis, responsible medical directors and accountable governing bodies. They established the patient bill of rights.
So when I accept this award, my pride comes from the fact it is from the patients of AAKP - the real heroes and pioneers who through tenacity and resourcefulness helped to shape dialysis into the miracle it is today. As we face challenges going forward, I promise to live up the the heritage established by its prior winners.
I would like to acknowledge all of those who have supported my efforts to work in the nephrology community - some are here tonight. My family who tolerated my splitting time between them and patients for the past 45 years - Joyce, Stephanie and David, Joey and Robyn and Robert. The members of my Davita team - Keith, Judy, Keri, Pegi and Denit, who are here from Houston, and the staff and leadership of AAKP that work so hard and so well as a team to continue advocating and creating educational opportunities for patients in the spirit of founders like Sam Orenstein, Peter Lundin, Bill Litchfield, and Shep Glazer.
