10/4/98

`AIDS of the '90s'

Hepatitis C reaching epidemic levels in United States

By Genna McLaughlin

TRIBUNE-REVIEW

John Adamson had been donating blood for years and had never gotten a letter from the Pennsylvania Department of Health.

So this one, a few weeks after he had donated, seemed unusual.

It came in the mail that March afternoon in 1993.

He was home alone. Jonathan and Andrea were at school. Pam was at work. He had planned to spend all day helping a friend with construction, but by 1 p.m. he was too exhausted to continue.

He picked out the letter with the Department of Health logo from a small pile of mail. He tore it open and began to read.

When he got to the middle, he sat down.

At the bottom of the page, he started again.

It was minutes before he was finally able to move. When he did, he went straight to the phone and called his family doctor - someone he hoped could answer his questions.

"What the hell is it?"

"What does it mean?"

DIAGNOSIS

"I'm going to tell it to you straight," said Dr. William Provance.

It had been days since Adamson had read the letter for the first time. Since then, he had been through four blood tests and two doctors. A physician at Ligonier Medical Associates had sent him to Provance, a gastroenterologist in Latrobe.

"`It's known as AIDS of the '90s,'" Adamson remembers him saying, "`It's chronic hepatitis C. In 10 years you'll be dead if we don't find a cure.'"

That's when it hit, Adamson says now from his home in Wilpen. "I didn't know what it was when I got the letter. I tried to find stuff to read on it. I had to dig. There wasn't much information out there."

Provance had been studying the disease for years and was able to fill in the missing pieces.

THE `SILENT EPIDEMIC'

Adamson shares the hepatitis C virus with an estimated 4 million people in the United States. Most don't know they're infected. The virus, transmitted by blood-to-blood contact, was discovered by scientists within the last 10 years. It can take decades to develop and can lead to liver failure or cancer.

In most cases, it's deadly. Last year, 10,000 people died from it.

"It is an epidemic," said Provance. "We've been yelling about it for years. People don't get as worked up about hepatitis C as HIV and this could be worse."

He's not the first person to compare it to the AIDS-causing virus. In March, former U.S. Surgeon General C. Everett Koop told Congress that "we are at the edge of a very significant public health challenge, not unlike the AIDS epidemic. (Hepatitis C) is a disease that millions will carry for a decade or more, possibly spreading to others."

Medical professionals have dubbed it the "silent epidemic" because of its ability to lie dormant in the body without symptoms. It has only recently become a hot topic in the medical field and has yet to impact the public as AIDS has.

Blood was first screened for the virus in 1992, making thousands of blood transfusion patients possible carriers. Still, few have ever heard of hepatitis C.

Provance said a substantial part of his practice is treating hepatitis C and he knows "patients don't know about it."

"I think they've heard of it," said Dr. Jeffrey James, an infectious disease specialist at Uniontown Hospital, "but I don't think they know how it's different from hepatitis A or B. They don't know what it does or how it's transmitted."

According to James, doctors don't know as much as they'd like.

"The full natural history of this infection is still not known," said James. "It still remains to be seen after 20 to 30 years what the effect is."

What is known is that unlike A and B, hepatitis C has no vaccine.

Scientists have never even seen the virus. Only by cloning its genetic sequence were scientists able to create a blood test. The virus is tricky, said Provance, because it often mutates under treatment.

He said that makes a cure difficult and maybe impossible. At the very least, it could be decades.

In the meantime, the Hepatitis C Foundation has said that without education about the disease and its transmission, the number of deaths could triple by the year 2010. Many of the victims won't know they have it until liver damage has already started.

SYMPTOMS

"My skin had a yellow tone but I didn't notice it and I was tired all the time. But I just thought it was because I pushed myself," said 43-year-old Adamson, looking back on signs, like fatigue and jaundice. He can't remember when they started but he knows it was long after his shoulder surgery in 1973 when he received a unit of blood he now believes was carrying the virus.

His eyesight is deteriorating. He doesn't know if it's a result of the virus or the medication he's on or neither. He just knows he has a harder time reading the newspaper now.

The father of four and grandfather of three taught CPR classes, volunteered at Wilpen Volunteer Fire Department and was an emergency medical technician before 1993. He gave it all up in the years after his diagnosis. "I'm too tired. I have to fight to get up and moving every morning. And, I have to watch if I bleed or I have an open sore."

The risk of transmission with hepatitis C is lower than with HIV or with hepatitis A or B, because it takes a greater amount of blood, said a spokeswoman for Hepatitis Foundation International. But others argue not enough is known about the virus to be sure.

"There is still much that medical researchers do not know about how this disease is transmitted," said Koop in his congressional testimony.

IV drug users and transfusion patients prior to 1992 are considered high-risk individuals. Casual contact has been ruled safe and sexual intercourse is a rare cause of transmission.

But, Adamson doesn't like to take chances. Because he has a cold sore on his mouth, he won't kiss his grandchildren. It's hard enough wondering if he infected anyone all those years he was donating blood before the test was created.

"We're the so-called guinea pigs," said Adamson of himself and others who are victims of the disease now during its early years, like the AIDS patients who died before the public took notice and the government started funneling billions of dollars into education and research.

He takes an experimental mix of drugs that lowers his liver enzymes. That seems to have slowed down the liver deterioration.

He tries to make people more aware of the disease.

When a patient who had tested positive called from Dr. Provance's office, Adamson tried to help him, tell him all that he had learned about it.

The man called back a few days later in better spirits. The test had been a hoax. He didn't have the virus.

"When I told the guys at the fire department, they laughed in disbelief," said Adamson. "`You got AIDS? `You eat some bad fish?' they asked. They had no idea."

His doctor sees the same thing when he tells patients about the disease. He promises more people will know soon.

"There's a strong possibility you know someone with hepatitis C," Provance said. "You probably know several people."

Eric McCandless/Tribune-Review