Researchers in Colorado are studying an experimental drug to treat a rare genetic disease with no cure that affects the kidneys. He is a father of two who is taking part in the promising clinical trial.
Scott Hinerfeld is an avid cyclist, climber and snowboarder. But 2 years ago, the father of two was struggling. “My level of fitness was declining. I started waking up feeling sick.”
Scott had Alport Syndrome, a rare, genetic disease that causes progressive loss of kidney function. There is no cure.
For Scott’s brother, Matt, it led to a kidney transplant. It seemed Scott would eventually need the same. “It became pretty evident that my kidney function was declining,” Hinerfeld notes.
But Scott was directed to nephrologist Dr. Geoffrey Block at Colorado Kidney Care and the director of research had a clinical trial of an experimental drug.
We’re studying a medicine called bardoxolone methyl. It’s made by a company called Reatta,” explains Dr. Block.
Scott was the first person with alport syndrome to try bardoxolone. According to Dr. Block, after 12 weeks, Scott’s kidney function stopped declining and actually improved.
“I kind of have chills right now talking about it,” Hinerfeld said.
“W’ve never studied anything like this that makes kidneys better,” says Dr. Block.
“I don’t often say this … but I feel blessed,” Hinerfeld says.
Scott’s been taking the drug now for 18 months. He says he feels normal again. He hopes bardoxolone buys him time until researchers find a cure.
(Kathy Walsh, CBS News)