A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic
Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!
She filed the paperwork for adoption and waited patiently to hear back.
“We were stunned when we received the call from the agency,” said Jones. “We felt so incredibly lucky.”
But the adoption did not come without complications. Esmee and Willa were born in one of the poorest provinces in China, and they both tested positive for hepatitis B (HBV). HBV is a virus that attacks the liver, and can infect anyone, but young children are at greatest risk for persistent infection. Chronic HBV is typically a mild disease in children; however, the virus can cause serious liver damage. Jones knew going into the adoption that Esmee and Willa would need to be evaluated by a pediatric liver specialist at Seattle Children’s as soon as they arrived to the U.S.
“I didn’t know what Hepatitis B was before the adoption,” said Jones. “We needed to be informed, but we were never scared. We knew they would be seen by a great team of specialists when we brought them home.”
Receiving care in the U.S.
In 2009, Jones and her husband traveled to China to arrange to bring Esmee and Willa to the U.S. After a month, they were on a plane from China to Seattle, Wash., excited for the girls, then 5 and 6 years old, to see their new home.
“It was a lot for the girls at first,” said Jones. “They had to adjust to a new home, new culture and new language. Then on top of that, they needed medical care. It was a little overwhelming at first. But overall the transition was smooth.”
The girls were brought to Dr. Karen Murray, division chief of the Pediatric Gastroenterology and Hepatology program at Seattle Children’s, who is internationally known for her pediatric liver disease research.
“Esmee and Willa were asymptomatic when they first arrived at Seattle Children’s,” said Murray. “Willa had a high amount of virus with elevated liver laboratory values, while Esmee had a high amount of virus with normal liver lab tests. The two girls fit into two very different populations for treatment, one that presents a unique problem for clinicians who treat pediatric patients with HBV.”
Esmee, unfortunately, fit into a group in which her risk for future liver cancer was elevated but for whom traditional treatment methods aren’t typically effective at clearing the virus. Esmee’s only hope for an effective treatment was through a clinical trial.
Fortunately, Murray and others in the Hepatitis B Research Network, a national conglomeration of clinical centers with expertise in caring for patients with chronic HBV, are working to develop an effective treatment using currently available therapies to help a population of patients who have been left with no other treatment option.
The trial, in which Murray is involved, began with planning stages in 2010, patient recruitment in 2013, and will continue into 2017.
And although the trial is no longer accepting new patients, anticipation of the results offers hope for many who don’t qualify for standard treatments, like Esmee who has an immune-tolerant response to the HBV infection that doesn’t respond to tradition treatments.
“Today, drugs target the most responsive group of individuals with HBV, a group that excludes Esmee,” said Murray. “Our goal is to fill in the gaps in treatment options for these patients. To do so, we’ve essentially taken the best of injection medicine and oral medicine available for HBV patients and combined them. Using these two well established drugs, we’re offering the best hope for treatment.”
A bright future for Esmee and Willa
Today, both Esmee,12, and Willa, 11, are doing great. They are just like any other healthy teenage girl. They need to visit Seattle Children’s about every three months for follow up care, but their blood work showed promising results, Murray said.
“The treatment worked really well,” said Jones. “I’m to the moon! They’re young and probably won’t understand the significance until adulthood, but I’m so happy. It’s a wonderful thing Dr. Murray is doing at Seattle Children’s.”
According to Murray, due in part to large to advances in medical science and because of clinical trials, the future for people with chronic HBV is bright.
“Being involved in a clinical trial can not only provide a direct positive response for patients enrolled, but can contribute to future advances as well,” said Murray. “Before this trial, we didn’t have effective treatments for patients with an immune-tolerant response to the HBV infection, but now we have a promising treatment under investigation.”
To learn about more treatment trials, please visit the Hepatitis Research Network website.