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  5. A Tireless Patient Advocate Against PKD Rejoices on Drug Approval

24APR 2018

VOL.103

  • US

A Tireless Patient Advocate Against PKD Rejoices on Drug Approval

Bill Brazell was ecstatic on April 24 upon reading a decision he has long advocated for and awaited - U.S. regulatory approval of Otsuka's tolvaptan for use in slowing the progression of ADPKD (autosomal dominant polycystic kidney disease) in patients at risk of rapid progression. ADPKD is a progressive, inherited condition in which cysts proliferate in the kidneys, often leading to kidney failure.

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Having lost numerous relatives to ADPKD, and some years after being diagnosed himself, Bill realized that remaining quiet about his condition was of no help to anyone. And so he began to do everything in his power to advance awareness of ADPKD as well as the search for a first treatment and an eventual cure.

Bill as Kenny the Kidney with his daughter, Josephine.

Bill's awareness-raising has included contacting legislators, going on national TV and even wearing a kidney costume in the park to raise research funding for the PKD Foundation, where Bill has volunteered as a board member for nine years.

To support the advance toward an ADPKD treatment, Bill participated for over 12 years in the clinical trials for tolvaptan, which culminated in the U.S. regulatory approval on April 24. He notes, "Even the possibility of a treatment changed my life and during the trial I and the woman I love decided to marry. We now have three wonderful children, and I do worry about them, but the news of the tolvaptan approval for ADPKD provides me and my family with tremendous hope."

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