New breakthrough treatments for hepatitis C have not yet been tested on children, though there are tens of thousands of infected kids in the United States.

It’s a common concern for women diagnosed with hepatitis C: Will I pass the disease onto my child?

Luckily, only 5 or 6 percent of mothers with hepatitis C pass the disease along to their babies, said Dr. Naim Alkhouri, a pediatric gastroenterologist at the Cleveland Clinic.

Still, the American Liver Foundation (ALF) estimates there are between 23,000 and 46,000 children in the United States living with hepatitis C. New medications with cure rates close to 100 percent and relatively few side effects have revolutionized hepatitis C treatment for adults, but not much has changed for children.

Gastroenterologists still treat hepatitis C-infected children with interferon and twice-daily, oral ribavirin. This was standard for adult treatment too, until the U.S. Food and Drug Administration (FDA) approved sofosbuvir (Sovaldi) last year.

Interferon and ribavirin both cause serious side effects, including depression and fatigue, though doctors say the drugs take less of a toll on children than adults. Still, the cure rate remains low, at about 45 percent for genotype 1 infections in children after almost a year of treatment, according to the ALF. Not only does the interferon-ribavirin combination have a low cure rate, but interferon can also slow growth in children.

Pregnant women cannot be treated for hepatitis C, Alkhouri said, because ribavirin causes birth defects. Interferon-ribavirin treatment is not FDA-approved for children under the age of three.

A baby also can’t be tested for hepatitis C at birth because it may falsely test positive, Alkhouri said. It can take a year and a half or more to know for sure if a child is infected.

None of the new hepatitis C medications recently approved by the FDA, such as Sovaldi and ledipasvir-sofosbuvir (Harvoni), have been proven safe for use in children.

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Alkhouri, a member of the American College of Gastroenterology, said pharmaceutical companies began clinical trials in children some time ago with telaprevir (Incivek). Incivek came out prior to Sovaldi and Harvoni. The medication landscape is changing so fast that one of the Incivek trials was canceled, he added, when Sovaldi and Harvoni came on the market.He believes it makes sense to wait until the dust settles as new hepatitis medications come to market before beginning clinical trials in kids. He said we need to know which medications are the safest and most effective among adults before beginning trials on children.

That’s not the kind of news mothers like Nancy Netherland want to hear.

Netherland adopted two children from a mother she knew had hepatitis C. She hoped neither would test positive, but eventually she learned that one of them had the disease when the child became old enough to test.

She told Healthline she’s waiting for clinical trials to begin on new treatments for children that include Sovaldi. In the meantime, she has tried to raise awareness of the issue of children with hepatitis C and is in the process of creating an online resource for parents.

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Netherland, who worked as an artist in residence at a San Francisco hospital, has strong ties to the medical community. She knows where to go for the best healthcare for her daughter, and it helps living in a world-class city like San Francisco, she said.

She cannot help but feel that children are being left behind when it comes to the new breakthroughs in hepatitis C treatment. Though her daughter is very active and plans on being a lifeguard someday, she does have occasional bouts of illness.

“My goal is two-fold, to take care of my own child … and to keep her healthy and not wait for her liver to degrade … and to make sure no other parent has to face what I have, having a child with an acute and potentially lethal form of HCV and no effective treatments approved by the FDA, unavailable in the USA, not affordable even if they were.”

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About 40 percent of children infected with hepatitis C by their mothers spontaneously clear the virus on their own. Hepatitis C is a very slow-moving disease and most young people would never know they are infected. But in about one-fourth of infected children, the disease can progress quickly and require treatment, according to the ALF.

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A fraction of children born with hepatitis C, including those born to mothers who did not have proper prenatal care, can end up with chronic infections. For women who are drug users and are co-infected with HIV, the risk of transmitting hepatitis C to their child increases to as much as 15 percent, Alkhouri said.

“I once had a child 17 years old who wanted to donate blood, and it turned out she had [hepatitis C],” Alkhouri told Healthline.

His tests confirmed a chronic infection. “Going back, she had no risk factors. When we tested mom, who was in her 40s or 50s, she also had it. The mom admitted to using cocaine.”

Blood that gets onto a straw or rolled paper used to snort cocaine and other drugs is one common way the virus is transmitted, Alkhouri said.

Dr. David Bernstein, chief of hepatology at the Center for Liver Disease at North Shore-LIJ Health System and a fellow of the American College of Gastroenterology, adds that children and young adults should be careful when considering getting tattoos or piercings. Some people have contracted hepatitis C that way, too, he said. Always ask about sanitation procedures at the studio when getting tattooed or pierced.

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Although most children in America with hepatitis C got it from their mothers, some do get infected by using illegal drugs. America’s ongoing battle with painkiller addiction has led to injection heroin use even among teens.

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The majority of Americans with hepatitis C are baby boomers. Many contracted it from blood transfusions before the virus was discovered in the 1990s, or from unsanitary conditions. Prior to the HIV epidemic, America’s sanitation measures in healthcare settings were not as thorough.

Children of baby boomers who know their parents are infected should get tested for the virus, Alkhouri said. Longtime sexual partners of hepatitis C-infected people should also be tested, he added. But he noted that the chances of contracting hepatitis C from heterosexual sex are extremely low.

Those who have homosexual sex, particularly if they are already infected with HIV, are at greater risk of contracting hepatitis C.

Netherland told Healthline she will do whatever it takes to get her daughter the treatment she needs, even if it means going abroad. She said she has even talked to specialty teams about treating her daughter with off-label medications if need be.

“I hope this won’t be the case … but I am clear based on what happened with HIV/AIDS that it’s better to be prepared with multiple options than to wait for the market demand to catch up with the public health realities and needs of vulnerable and disenfranchised populations,” she said. “In the meantime, I wait with bated breath and wonder each time my daughter is fatigued for a few days in a row, complains of pain, or has itchy skin.”

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