Research led by Dr. Karen Murray opens the door for children to use a game-changing treatment originally developed for adults.

Jennifer Hart and TalonThe ride home from the doctor appointment was full of tears, but that was nothing new for Lisa Mills. As the mother of a boy born with multiple medical conditions, she was used to emotional moments.

This was different, though, because Mills had just learned that her adopted son, Talon Hendrickson-Zimmerman, was free of the dangerous and stigmatizing hepatitis C virus he had been carrying since birth.

“It was so hard to fathom that the virus was truly gone,” Mills recalls. “We cried in the office; we cried in the car. It was just amazing.”

More than a year later, Talon, 12, remains virus-free thanks to two new drugs brought to children like Talon through the research of Seattle Children’s liver specialist Dr. Karen Murray.

Infected at birth

Talon, like most children with hepatitis C, was infected in the womb as a byproduct of his biological mother’s drug abuse. The blood-borne virus is commonly spread by sharing needles. Untreated, the disease can eventually cause liver failure, cancer and even death.

After Talon was diagnosed at age 2, he tried the standard treatment but could not tolerate the side effects. With the virus in his bloodstream, his family had to guard against the remote risk that Talon could infect another person. The family also had to live with the stigma attached to the disease’s link to drug use.

“I had to carry a bag with a bunch of medical supplies in case I got hurt and started bleeding. It was embarrassing to tell my friends and coaches and teachers,” says Talon. “Now I don’t have to worry about that anymore!”

New drugs change game

An estimated 2.7 million to 3.9 million people in the U.S. – including as many as 46,000 children – are infected with hepatitis C. Previous treatments required six to 12 months of regular injections and caused flu-like side effects. Worse yet, they were only effective about half the time and traces of the virus would still remain.

The two new drugs that Murray is helping to bring to children change the game. First approved for adults in 2013 and 2014, the drugs are taken in pill form every day for just 12 to 24 weeks, have virtually no side effects and work nearly 100% of the time in both adults and children.

The advantage of the new therapies – developed by Gilead Sciences Inc. under the brand names Sovaldi and Harvoni — is that they act directly on the virus to prevent it from replicating. The old therapies acted indirectly by harnessing the immune system to fight the virus.

Fast-track for kids

Usually drug companies move slowly to bring adult drugs to the pediatric market. But in this case Gilead didn’t wait.

“They are on a mission to wipe out hepatitis C, so once Gilead showed Harvoni and Sovaldi were safe and effective in adults, they wanted to make them available to children as quickly as possible,” Murray says.

Gilead tapped Murray, a national expert in pediatric liver disease, to lead accelerated pediatric studies. Within just four years the U.S. Food and Drug Administration approved both Sovaldi and Harvoni in children 12 and older.
Murray’s research is now focused on determining if this approach is safe to kids of every age who are fighting hepatitis C.

“It’s so gratifying to be able to tell families that we can probably cure their kid’s hepatitis C in just a few months,” says Murray. “For the first time, the words cure and hepatitis C are being used in the same sentence.”

Originally published in Connection magazine, Fall 2018.