When babies are infected with hepatitis B, chances are they’ll stay infected for life. It becomes a chronic condition.
Some live long lives and their deaths are unrelated to their hep B infection.
Others develop cancer or their liver gives out. And then there are those who have minor symptoms, such as jaundice or fatigue.
You never know what or when or if something’s going to happen.
There’s no wonder drug for this disease. The available treatments are anemic at best, and few get favorable results.
My daughter, who was infected as an infant, has lived with hep B for 13 years. We’ve waited a long time for drugs that might work for her stage of the disease.
Hope has just peeked over the horizon.
NIH is running a clinical trial through a few centers in the US and Canada on children whose hep B infection is at a certain stage.
They’re using a combination of entecavir and pegylated interferon. They’re not looking for a cure, but rather hoping to slow it down. Even the best results wouldn’t remove the hep b virus from the cells. It’s integrated now, and there’s no work being done that’s close to getting it out of the cells it’s infected.
But, if the stars align and results are better than expected, it could be that those who respond to this treatment can relax, knowing hep B needn’t remain on their worry list.
That’s what we want. We all want our kids to live long, happy, healthy lives.
We flew to San Francisco yesterday for blood work and to sign forms. Lots of forms. Dr. Phil Rosenthal is running the trial and Shannon Fleck, the clinical research coordinator at UCSF Benioff Children’s Hospital, is assisting. I’ve known Phil for nearly 20 years and was delighted to see how optimistic he is about this drug combo.
This first step is to determine if my daughter is eligible for participation in the study. Her lab results have to match the criteria set for the trial.
If she is eligible, we fly back down within 30 days and her name goes into a computer, which then spits back out her placement. She’ll either be in the control group (no treatment) or the treatment group.
If she’s in the control group and the study is proving successful, she’ll be allowed compassionate use of the drugs, but that won’t be for two or three years.
That’s where we are—not even past the first hurdle.
I know people who’ve been infected with hep B in their adult years and have died from the disease. And I know people who’ve had cancer or liver transplants, or both—all because of this infection.
There are lots of ways to become infected. The easiest way to prevent infection is to get vaccinated. You, your siblings, your parents, your kids . . . ask your healthcare provider about it.
You can’t fix this with an aspirin.
By Hep B Mom