Getting Hep

Hepatitis B is the Rodney Dangerfield of diseases: It just can't get respect. But it sure can kill you.

By way of comparison, most of Europe averages better than 90 percent in infant immunization coverage, says Dr. Bradley Woodruff, San Francisco-based medical epidemiologist for the CDC. "The U.S. rate is lower than that of 60 other countries, including Vietnam and Cuba," Woodruff says.

And it is boosting U.S. figures to acceptable levels that remains a key goal for public health efforts in San Francisco and across the nation, he adds. Trying to do its part, the CDC in 1991 went on a veritable crusade against hepatitis B: It recommended vaccination for newborns -- an alien ritual in this country, where most babies don't start getting shots until after they've left the hospital.

"From 1979 to 1989, the rate of hepatitis B has increased by 34 percent despite the availability of a very safe and effective vaccine," a frustrated Harold Margolis, chief of the CDC hepatitis branch, told reporters at a 1991 press conference. For want of money, knowledge, or motivation, few risk groups -- among them homosexuals, intravenous drug users, sexually active adolescents, and health care workers -- were getting shots.

And that was in the face of evidence that a teaspoon of blood -- which might contain five to 10 AIDS viruses -- might contain 500 million hepatitis B viruses. People pricked with contaminated needles face a 10 to 40 percent chance of becoming infected with hepatitis, the CDC estimates, whereas the chance of HIV transmission in similar circumstances is about one in 300.

The Occupational Safety and Health Administration, aware of the odds, issued mandatory regulations in 1991 to protect the nation's estimated 5.6 million health employees; it required hospitals to offer staff training, improved equipment, and free hepatitis B vaccinations to help avoid bloodborne infections. The American Academy of Pediatrics, the American Academy of Family Physicians, the American Medical Association, and health departments across the country all endorsed adding hep B shots to the required list of childhood vaccinations.

The troops at the top were rallied. It was time to get the action to the field.

Nov. 27, 1989. Wendy Marx was one of 787 people in the U.S. hoping for a liver transplant. The wait was promiseless. Six people were dying each day for want of a donor organ (today that number has risen to eight).

Desperate for help, gold medalist Carl Lewis held a press conference asking anyone who might know of an organ donor to call the hospital. "Hope Fading In S.F. Plea For Liver Donor," read the headline in the Chronicle. Marx remained in critical condition, suffering from fulminant hepatitis, a rare and particularly virulent form of the disease. "Doctors at Pacific Presbyterian Medical Center warned that swelling in her brain will cause irreversible damage unless an acceptable donor comes forward soon," the story read.

The calls that resulted didn't produce any leads. Meanwhile, Marx soared to the top of the nation's computerized transplant list. And then a young boy on the East Coast died in an auto accident -- the liver was packed in ice and flown to San Francisco. But just as surgeons prepped Marx for the operation, they were forced to call it off. The boy's liver had been too damaged in the crash to be transplanted.

Unbelievably, another donor became available hours later, this time a 9-year-old boy whose liver was unharmed. With luck, it would generate in Marx's body and grow to adult size. But first Marx had to survive a nine-hour surgery -- doctors gave her a 50-50 chance -- and struggle out of her coma.

Two days after surgery, Marx's lungs began working on their own. She opened an eye. She moved an arm. And then, according to her brother, Jeffrey, a journalist who at her bedside vowed to do whatever he could to increase public awareness about organ donations, she spoke. "They won't let me eat," she said, a line she'd be teased about for life.

It took Marx weeks to recover from hallucinations caused by the liver malfunction and drugs she was given; her body tried to reject the new organ, but finally relented. Marx, her family, and Lewis set to work publicizing the need for organ donations, and set up the Wendy Marx Foundation. Since 1990, the foundation has organized consciousness-raising events about organ donation in particular and hepatitis in general (hepatitis C can also do liver damage; see sidebar). The organization produces and distributes videos, talks to students and sports groups, and campaigns wherever possible, including the Superdome in New Orleans, an event at which Lewis sang the national anthem. Marx stood at his side.

"In one month's time, I went from a coherent, healthy 22-year-old with a whole future ahead of me to someone in a coma," Marx tells her audiences. "It didn't have to happen," she says. "If only I'd gotten vaccinated."

If only the liver was theatrical, like the appendix. If only it screamed for help when it was hurting, and ultimately could be tossed.

But the liver leads a subtle, quietly indispensable life. A veritable biochemical factory, as the CDC's Woodruff puts it -- on his file cabinet is a sticker that reads "The hepatitis B vaccine: Don't leave your liver without it" -- the liver detoxifies and excretes poisonous substances. It also processes nutrients and drugs absorbed from the digestive tract, stores vitamins and minerals, produces quick energy, creates body proteins, regulates blood clotting, maintains hormone balance, controls the production and excretion of cholesterol, and -- in its more commonly known function -- metabolizes alcohol, among other insulting agents.

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