Longform

THE HEP-C GENERATION

part 1 of 2
The gravel crunches beneath the slow tread of Mike Lamb. Every so often, he pauses to gather his strength, then continues on up the trail that winds into the heart of the Garden of the Gods.

One of his old drinking buddies is getting married at the rock formation known as the Three Graces. The ceremony was supposed to be a small affair, family only, but Lamb had asked if he could attend. He might not have much time left for personal connections.

It's the end of the first day of winter. Sinking below the black outline of the mountains just south of Pikes Peak, the sun streaks the sky with pastel pink. On such an evening, Lamb, only 47 years old, finds it hard to believe that he will die soon unless someone else's tragedy gives him a second chance at life.

Disease has destroyed his liver, and Lamb's only hope is a transplant. He believes he's been carrying his viral assassin since his days in the jungles of Vietnam as a Navy corpsman. His hands awash in the blood of men he was trying to save, he was unmindful then of cuts and needle pricks.

A football player and wrestler at his Colorado Springs high school, Lamb used to be an avid outdoorsman. Now he spends weary days inside his mother's apartment, hardly able to get out of bed.

He waits for a telephone call from Tracy Steinberg, a transplant coordinator for University Hospital in Denver. She's the one who will tell him if he gets another chance to live. There's already been one false alarm that ended in disappointment. But he hangs on, hoping.

His enemy is one of the most dangerous viral epidemics of the Nineties--and beyond. But it is not AIDS. It is hepatitis C.

Like almost everyone else outside of the medical community, Lamb had never heard of hepatitis C until a doctor informed him a year and a half ago that the disease had destroyed his liver. He was dying.

Records of hepatitis outbreaks stretch back thousands of years. From the beginning, its victims were identified by jaundiced, yellow-looking skin and eyes; other symptoms included vomiting, diarrhea and flu-like aches and pains that lasted for weeks.

By the 1800s doctors realized hepatitis could be contracted by drinking polluted water or eating food contaminated with human feces. In 1885 scientists discovered that hepatitis also could be transmitted through contact with contaminated blood. But it wasn't until the 1940s that they were able to distinguish between hepatitis A and hepatitis B.

Hepatitis A, also known as infectious hepatitis, is rarely fatal--it kills only about one person in 10,000. It's the version transmitted through oral-fecal contact, usually by contaminated food or water. About half of all the people in the United States have been exposed to hepatitis A by the time they become adults, but most exhibit minimal or no symptoms. Those with severe cases still recover in six to ten weeks with rest and are immune to reinfection.

Hepatitis B, however, can lead to chronic liver disease that often proves fatal over the long term. About 300,000 new cases of hepatitis B are reported each year in the United States, according to the Centers for Disease Control (CDC); about 800 of those are in Denver. A blood-borne virus, hepatitis B preys on people who receive blood transfusions or other blood products such as anti-bleeding concentrates required by hemophiliacs. Others at risk are junkies and medical personnel, as well as people who have sexual contact with infected persons. Some 200 health-care workers die from occupationally acquired hepatitis B every year, according to James Marx, an infection-control and epidemiology consultant in San Diego.

A vaccine was developed in the late Seventies that protects against hepatitis B infection, and some medical professionals advocate a widespread inoculation program--like the mass polio vaccinations of the Fifties--to eradicate the virus. For those already infected, there are several forms of treatment. The most common is injections of interferon that will deactivate the virus in 30 to 60 percent of hepatitis B patients, half of whom go on to purge the virus from their bodies entirely.

But even as the medical community was making strides in combating the disease, researchers were becoming increasingly worried over the growing presence of what they thought was hepatitis B in the nation's blood supply. By the mid-Seventies, about 10 percent of the people who received blood transfusions were becoming infected.

Researchers began looking into ways to inactivate the virus in the blood, including heat treatments and a detergent process. But they were stonewalled by the blood industry, which did not want to alarm the public. After all, industry officials argued, a test for hepatitis B was close to approval by the Food and Drug Administration, and soon they would be able to screen for infected blood.

When the test for hepatitis B was instituted in the late Seventies, researchers thought they had the problem solved. But it soon became apparent that people receiving transfusions of blood that had tested clean for hepatitis B were still getting hepatitis. That's when scientists realized there was at least one other strain of the disease, and it was causing 90 percent of all post-transfusion hepatitis cases.

Unable to identify the strain, scientists labeled it with an umbrella designation of hepatitis non-A, non-B. They didn't know what it looked like, how it acted on the body, or how it was transmitted--except through transfusions.

It wasn't until five years ago that researchers with the CDC in Atlanta finally managed to identify hepatitis C and began to understand its devastating consequences.

Of those people infected with hepatitis C, the CDC estimates that between 50 to 85 percent will develop chronic hepatitis C. "Chronic" means that the virus sets up shop permanently in the body, often without showing external symptoms. (An "acute" infection, on the other hand, is one that may exhibit itself with harsh and immediate symptoms but can eventually be purged, like hepatitis A.) As soon as a person contracts chronic hepatitis C, his liver is under siege.

For the past few years there have been an average of 1,700 new cases of chronic hepatitis reported annually in Colorado, according to Dr. Gregory Everson, the medical director of the liver program at University Hospital. As many as half of those people are expected to develop such serious liver disease that they must either get a transplant or die. Over half the patients waiting for liver transplants at University are there because of hepatitis C. And getting on the transplant list hardly ensures survival. University is by far the state's largest liver research and transplant program; sources there say that a quarter to half of the patients on the list will die before a donor liver becomes available.

The CDC now estimates that for the past decade, there have been about 150,000 new hepatitis C infections every year in the United States; there are currently an estimated 3.5 million people living with the disease. Those figures are inexact, says Linda Moyer, a CDC hepatitis epidemiologist, because hepatitis C infections have been "grossly undiagnosed and underreported."

By comparison, the CDC estimates that 1 million people in the United States are living with HIV, the virus that causes AIDS; another 200,000 are thought to be currently living with AIDS. About 350 new cases of AIDS are reported in Colorado every year. In 1992, the last year for which the CDC has complete statistics, more than 30,000 people died of AIDS; more than 240,000 people in this country have died thus far.

There are many similarities between AIDS and chronic hepatitis C. Both are blood-borne viruses that came to the attention of the medical community in the mid- to late Seventies. Both are incurable, and there's no preventive vaccine available for either. The methods of transmission are similar, too. And so far, treatments for both diseases have met with only limited success.

But there the similarities end. Since the HIV virus was isolated in 1984, AIDS has been considered the epidemic of the late twentieth century. The federal government now spends nearly $2 billion on AIDS research every year.

Hepatitis C was finally identified in late 1989. Compared to the money spent on AIDS, a "piddling" amount goes to hepatitis C research and liver disease in general, says Ari Maravel, public-relations director for the American Liver Foundation. Last year the government's total spending on all liver-disease research was $132,000. Treatment research, such as the program at University Hospital, is financed entirely by pharmaceutical companies.

"HIV drives everything," says Moyer. "There is no comparison between the amount of money for research. It's all in HIV."

More people have hepatitis C than have AIDS. The federal government spends $1 billion each year providing services for people with AIDS, yet there is no money to provide emergency services for hepatitis C sufferers who also often lose their jobs, their insurance, their homes and their support because of the disease. And although a liver transplant may save them, they first must be able to afford the procedure--many insurance policies don't cover it--and then qualify to be placed on the list.

There's another crucial difference between AIDS and hepatitis C: how long the diseases take to kill. "With AIDS, mortality is measured in years," says Everson. "With hepatitis C, it's measured in decades."

Since barely a generation has passed since scientists began to suspect the existence of hepatitis C, Everson fears the country is only now seeing the beginning of the epidemic's fatal implications. The results of unscreened blood transfusions and widespread intravenous drug use two decades or more ago are just starting to surface. He estimates that between 20,000 and 40,000 Coloradans are infected with hepatitis C; most don't even know they're carrying the virus. It comes as a nasty shock when they try to donate blood, take a test at a health fair or, like Mike Lamb, suddenly find themselves at death's door.

And more than half of those who do know they're infected say they cannot identify a risk behavior, such as intravenous drug use, that led to their infection. Even taking into account the fact that people lie, researchers admit they simply don't know all the ways that hepatitis C is transmitted--a necessary step for at least controlling an epidemic they can't cure.

Another necessary step is public awareness. Widespread AIDS education helped stabilize the growth of that epidemic and even reduced the number of new infections in the two most affected groups: gay men and intravenous drug users. But outside of medical literature, there has been little note of hepatitis C.

From his New Jersey office, Maravel complains that he can't get the media to pay attention to liver disease in general or hepatitis C specifically. This, he says, despite the fact that last year more than 40,000 people died of liver disease.

Maravel can't say what percentage of that number can be attributed to hepatitis C. But he agrees with Everson's assessment that the first major wave of hepatitis C fatalities is just now appearing.

"We get about 50,000 calls a year," he says. "Starting two years ago, all of a sudden half of those calls were from people wanting to know about hepatitis C."

Separated by 2,000 miles, Everson and Maravel both refer to hepatitis C as the Silent Epidemic.

Mark was eighteen the first and only time he injected drugs. He and his friends had only one needle, but he figured it would be safe. Although he was aware from news reports that people could get that new disease--AIDS--by sharing needles, he lived in a small Vermont town and thought he knew his friends well enough to know if they were sick. It was 1984.

Two months after his drug experience--which he didn't like and had already decided to avoid in the future--Mark began to feel ill. His skin turned yellow, he was lethargic, he had difficulty keeping food down.

He went to his doctor, who took a blood sample. A few days later the doctor told Mark he had hepatitis non-A, non-B. His was a rare case in which the virus made its presence known immediately.

Mark breathed a sigh of relief. He'd feared AIDS, but the test for HIV was negative.

He had never heard of hepatitis, but the doctor didn't seem too concerned. The virus would remain in his body, the doctor said, and his liver enzymes would stay somewhat elevated. But the disease was unlikely to pose a significant danger.

Two weeks later, Mark's symptoms disappeared. A liver biopsy indicated no damage. Mark decided to forget that he had hepatitis C.

In 1986 Cathy was living in Florida when she was hired as operations manager for a medical-equipment company.

The firm leased the latest in medical technology to hospitals, including dialysis machines, incubators for premature babies and suction equipment for operations. According to the company's lease agreements, the hospitals were supposed to clean and decontaminate the equipment before returning it. But it often came back covered with dried--and sometimes not so dried--blood and other body fluids.

The company also guaranteed customers that they would have the requested equipment within an hour of placing an order. That meant that Cathy and her crew would often have to go to one hospital, pick up the machinery and, after the briefest of wipe-downs, take it to another hospital.

Cathy was aware that AIDS was a virus in the blood, but she also believed that the cleaning fluids she used would kill viruses. The company downplayed any risks and didn't even provide gloves for its employees, she says.

If the heart is the body's pump house for circulating blood, the liver can be thought of as its filtration system. All the blood that goes from the heart to the intestines drains into what is called the portal blood system, which feeds into the liver. In that organ the system branches out--like a tree--with the blood passing through the liver cells. The branches come back together on the other side of the liver, and from there the blood heads back to the heart. The liver regulates the body's metabolism, including energy levels. It takes toxic chemicals--among them alcohol and drugs--and changes them into nontoxic substances. The liver stores sugar and produces bile, which is necessary in digestion for nutrient and vitamin absorption. It also regulates cholesterol.

The liver is located in the right upper abdomen and is protected by the rib cage. It can actually sustain a great deal of damage and continue to work by compensating for lost cells.

Hepatitis is an inflammation of the liver. It can be caused by drug and alcohol abuse or by viral infection. Chronic inflammation of the liver can lead to cirrhosis or liver disease.

Cirrhosis is a scarring of the liver in which the architecture of the organ is distorted; the scarring results from the liver's attempt to heal itself. University's Everson equates the process to a storm blowing through a house and knocking down several walls: When the walls are re-erected, they're put up crooked and the house doesn't function as well. Repeated injuries from wave after wave of alcohol or viral infection can eventually affect the structure to the point that the house is destroyed.

Without a functioning liver, death is certain.
Since scientists identified hepatitis C five years ago, they have gone on to find hepatitis D and E. They suspect a hepatitis F, but it has not yet been identified. Hepatitis D can exist only in concert with hepatitis B; it has a high mortality rate from cirrhosis and liver cancer but can be treated in the same way as hepatitis B. Hepatitis E, which is rare in the U.S. and primarily affects people in developing countries, is similar to hepatitis A in transmission; it has a 10 percent mortality rate in pregnant women but otherwise is not considered fatal.

It is hepatitis C that raises the greatest alarm. It can remain in the body without becoming active. Or it can be active and then, mysteriously, become inactive. When active--a diagnosis made by noting an increase in enzymes produced by the liver--the virus causes repeated inflammations of the liver.

Most known hepatitis C infections, 38 percent, occur from drug abuse, according to CDC statistics. Other known methods of transmission are categorized as: sexual/ household (inapparent inoculations), 13 percent; transfusions, 4 percent; and occupational (mostly medical personnel), 2 percent. That leaves about 40 percent unknown.

Blood screening has lowered the risk of transfusion infections to one-tenth of 1 percent. But a new worry is the widespread use of amateur tattooing as a gang symbol or rite of passage in some cultures.

The current thought on hepatitis C is that, compared to AIDS, it is not easily transmitted through sexual contact. The risk is "very low" for people in stable, monogamous relationships, says Everson. Adding multiple sexual partners--either heterosexual or homosexual--increases the risk.

When one person in a couple is infected, a bigger concern is "inapparent inoculations" through the use of a partner's razor or toothbrush, Everson says. But again, he adds, there has not been enough research to prove or disprove the degree of risk.

In her report on "The Detection, Transmission and Outcome of Hepatitis C Virus Infection," Dr. Miriam Alter, the CDC's top hepatitis expert, notes that no vaccine for the virus is expected in the foreseeable future. Hepatitis C mutates inside the body, she writes, making it difficult, if not impossible, to develop a vaccine to prevent infection.

"Our understanding of the risks of transmission...is limited by inadequate studies, the need for more sensitive tests for the detection of infection and our inability to quantitatively measure infectivity.

"In the absence of a vaccine, the prevention of [hepatitis C] infection will depend on a better understanding of the host and environmental factors that facilitate the transmission of this viral infection."

end of part 1

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