Editor's Note: This statement was prepared by Home Dialyzors United staff.
It is with the most profound sadness that Home Dialyzors United announces the death of its founder and president, Richard J. Berkowitz. Since founding NxStageUsers, the precursor of the present organization, Rich has been a persistent voice for home dialyzors, for home modalities and for bettering the quality of life for patients. He was outspoken in his belief that every single patient deserves to live a normal life on their own terms.
Rich was single-minded in his quest to work with members of the House of Representatives to revamp and re-energize the Congressional Kidney Caucus. In 2012, HDU organized a Capitol Hill briefing with patients and care partners to educate members about home dialysis. As a result, Members better understood patient needs and the Caucus has more effectively worked to protect and advance the rights of patients.
In 2013, Rich spearheaded a campaign which resulted in a definitive ruling by the United States Department of Transportation that portable dialysis machines are indeed included in the definition of medical equipment and, as such, must be transported by airlines free of charge. This decision will benefit both current and future patients, enabling them to travel with less worry.
In addition, he initiated HDU’s annual conference which brings together professionals, patients and care partners to share ideas in an atmosphere of true equality.
Rich’s passion for patients has been evident in the online support and encouragement found in HDU. This determined devotion was seen as often in the 2:00 am motivational emails or calls as it was in his powerfully written blogs, public comments and articles.
Joe Turk, president of NxStage Medical, shared these sentiments: "NxStage's thoughts go out to Rich's family, his friends, and all of the many people he touched with his unique passion for expanding access to home dialysis therapies. Clearly patients have lost an incredible advocate, and we have lost a good friend.”
Rich’s legacy will live on in the lives of those patients and families who are thriving through home treatment and who are inspired to “pay it forward” by advocating for improved quality of life.