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Personal Stories: Hepatitis B Driven Out of the Shadows

Arline's Story

There was a time when Arline Loh of Wilmington, Del., didn't tell people she has hepatitis B.

"It carries such a stigma," says Loh, 57, an information technology expert who retired three months ago because of liver damage caused by the disease. "Hepatitis B is classified as an STD (sexually transmitted disease)."

It can be transmitted sexually, but Loh contracted the disease at birth from her mother, who carried the virus. About 90% of babies who are infected at birth develop chronic infection, compared with 6% of those infected later in life.

Until recent years, there was little the medical profession could do to help. Loh says the doctor who diagnosed her 17 years ago told her to "rest, and maybe you'll get better."

That has changed. Today there are five medications for hepatitis B, including two approved in 2005. "Now, I don't want to be silent," Loh says. "Now there are drugs available to manage and treat this disease."

Like hepatitis C, hepatitis B can cause long-term, chronic infection that can lead to severe liver damage, cirrhosis or liver cancer. The diseases can go undetected for decades because they often cause no symptoms until serious liver damage has occurred. "We're seeing an epidemic of both advanced cirrhosis and liver cancer," says Fred Poordad, chief of hepatology in the Center for Liver Disease and Transplantation at Cedars-Sinai Medical Center, Los Angeles. "I expect this to only get worse over the next 10 years" as the baby boomer population ages.

Hepatitis B disproportionately affects Asians and Pacific Islanders, who account for over half of the more than 1.3 million carriers of the virus, says hepatitis researcher Samuel So, director of the Asian Liver Center at Stanford University School of Medicine. Hepatitis rates among Asian-Americans are higher because the rates are high in many of their countries of origin, according to the Asian Liver Center.

China, where Loh was born, bears the world's highest rate of hepatitis B, he says. About one in 10 are infected, and about half a million people there die each year. "We call it the silent killer," So says. "Many people who are infected don't know it because they feel perfectly healthy."

Studies show that 10% to 20% of Asian-Americans have chronic hepatitis B infection. And carriers with no symptoms can unwittingly pass it on to their sexual partners or to their children. Routine blood tests don't include the specific test to detect hepatitis B, he says, so patients should ask for it.
Hepatitis is caused by viruses that attack the liver, causing inflammation. There are several types of the virus, labeled alphabetically A through E. But all of them initially can cause temporary symptoms such as fatigue, appetite loss, nausea and abdominal discomfort, dark urine and jaundice, or a yellowing of the skin and eyes.

There are vaccines for types A and B. An advisory committee of the Centers for Disease Control and Prevention last fall strengthened its recommendations to increase use of both vaccines. Now, all babies, not only those in states with high hepatitis rates, will be immunized against hepatitis A at 12 months to 23 months old. Also, hepatitis B vaccine will be required for all newborns and adolescents who missed their baby shots. Hepatitis B vaccine also is recommended for adults, especially those in high-risk groups.

Vaccination has helped reduce rates of hepatitis A from 143,000 cases in 2000 to 61,000 in 2003, and of hepatitis B from an average of 260,000 new cases a year in the 1980s, when the vaccine was licensed, to about 73,000 in 2003, the CDC says.

But the most common type of hepatitis is C, and for that there is no vaccine. As many as 4 million Americans and 170 million people worldwide may be infected, Poordad says. "There are still 30,000 to 40,000 new cases a year. Much of it stems from recreational drug use as well as immigrants to the U.S. who come already infected." He says hepatitis C is the most common cause of end-stage liver disease requiring transplantation.

Yet here, too, there is hope, he says. "There's been a flurry of research activity" investigating promising new drugs and drug cocktails, he says, and "we've gone from treatments that are less than 10% effective to therapies now that are 50% effective." Some strains of the virus can be eliminated in patients. "We feel if we can eradicate the virus," Poordad says, "we call that a cure."
That's what's happened for Robert Hartmann, 42, of Los Angeles, who owns the Improv Comedy Club chain. He contracted the disease after having dental work in 1977. It was undetected until 1992. "They didn't have a lot of treatment options," he says, so he didn't begin drug therapy for another 10 years. Now, after 16 months of combination drug therapy, he has been virus-free for a year and a half.

"That's why the message needs to get out that, guess what — get tested for hep C because the cure rate goes up every year," he says. "The sooner you get tested, the better chance you have of beating this without damage to your liver."


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