Experimental drug could help treat genetic disease affecting the kidneys

COLORADO — Researchers in Colorado are studying an experimental drug to treat a rare genetic disease with no cure that affects the kidneys.

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.”

He had Alport Syndrome, a rare, genetic disease that causes progressive loss of kidney function. There is no cure.

For his brother, Matt, it led to a kidney transplant. It seemed Hinerfeld would eventually need the same.

“It became pretty evident that my kidney function was declining.”

But Hinerfeld was directed to Nephrologist Dr. Geoffrey Block at Colorado Kidney Care. 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.”

Hinerfeld was the first person with Alport Syndrome to try bardoxolone. According to Dr. Block, after 12 weeks Hinerfeld’s kidney function stopped declining and actually improved.

“I kind of have chills right now talking about it,” said Hinerfeld.

“We’ve never studied anything like this that makes kidneys better,” added Dr. Block.

“I don’t often say this but I feel blessed,” said Hinerfeld.

Hinerfeld’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.

Researchers are also studying the drug in clinical trials to treat other forms of kidney disease.