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aren’t many teenagers who wouldn’t trade the world to be exactly like the kids
around them. That’s especially true for teens that test positive for hepatitis C, most often passed to them at birth through their mothers’ infection. These
kids may look as healthy as their peers, often showing few symptoms of the
virus. Despite appearances, hepatitis C lurks over them like a dark cloud, as
some patients with hepatitis C can develop cirrhosis of the liver, liver
failure and an increased risk for liver cancer later in life. In fact,
hepatitis C is the cause of an estimated 50 percent of adult liver transplants.
Twenty years ago, there weren’t many drugs to treat the virus, and the few drugs that did exist were expensive. Administered in shots, they often made patients very ill and only conquered the virus 15 percent of the time.
For almost two decades, Jean Molleston, MD, has been working with Riley at IU Health patients in clinical trials designed to find better hepatitis C drug therapies for children. During the same period, clinical trials with adults—always the first group of patients to test new medicines—were making headway.
“For adults, there are now these oral drug regimens that work over 90 percent of the time,” Molleston says. “They’re amazing.” At a cost of approximately $100,000 per patient, the drugs are still expensive, but they cause fewer side effects, and the adults who take them are most often virus-free within 12 weeks. Unfortunately, the only FDA-approved therapy for kids has a success rate of just 55 percent.
That story is changing through a handful of pediatric clinical trials Molleston supports in her research role at Riley at IU Health and the Indiana University School of Medicine. The studies are designed to see how children react to drugs that are only approved for adults. “These clinical trials give children access to drugs to treat their virus and a wonderful chance of clearing their hepatitis C,” she says.
Delivering the news that the drugs have worked is one of the most exciting parts of Molleston’s job. “It’s treatment that they couldn’t otherwise get, and when they clear that virus, it’s done, it’s gone,” she says. The knowledge that they are clear lifts a huge burden from kids who often feel very defined by their condition. They no longer have to be checked at frequent intervals or live in dread of having their illness get worse.
Molleston started as a bench scientist who thought she wanted to spend her career doing experiments in a lab. In the early 1990s, she participated in one of her first clinical trials for drugs to treat hepatitis B and soon realized that she really liked working with patients in clinical research. Since making the switch, she has been part of many studies organized by national pediatric research networks, often supported by the National Institutes of Health.
In that length of time, Molleston has witnessed a lot of bravery and motivation among her teen patients, especially those who weathered the earliest clinical trials. Many adults were not able to work while they were on these drugs. “I remember one of my patients who would get her shot on a Friday and participate in marching band the next day,” says Molleston. Their strength has made a smoother path for the kids who enroll in today’s clinical trials, which are designed to bring better drugs to children at younger ages.
Learn more about clinical trials at Riley at IU Health by visiting our resource page for parents and caregivers.