Doctors fear hepatitis C epidemic

For decades, a virus lurked in Jim Jacques' blood, slowly destroying his liver. It probably invaded his body when he was a child, and pumped through his veins during high school, a Navy career, marriage and fatherhood.

 All the while, Jim Jacques had no idea.

 It wasn't until 1992, when Jacques was hospitalized for acute pancreatitis, that a doctor first mentioned he had a ``touch'' of hepatitis. But the doctor didn't say anything else. Jacques assumed the virus had come and gone.

 Then, in 1997, a recurring bout with swollen feet and ankles sent him to a specialist, who told Jacques that he had hepatitis C. His liver was ruined, and he would need a transplant.

 ``I'm thinking, `Give me a break. I feel great. It's just that my foot is swollen,' '' Jacques said. ``It really didn't hit me. I knew nothing about hepatitis C. Not a thing.''

 Doctors say the lack of awareness about hepatitis C is part of what makes the disease so deadly. Only a fraction of those infected know they have the virus, even though it is the most common blood-borne infection in the United States.

 It is the leading cause of liver cancer and cirrhosis, a condition in which scarring destroys the liver. It is the most common reason for liver transplants. And it is simmering in the blood of an estimated 40,000 people in Hampton Roads and 4 million Americans.

 But the virus can hide in the body for 30 or 40 years without causing any symptoms. By the time many patients are diagnosed, their livers are destroyed and their only hope is a transplant.

 As a result, hepatitis C is driving an unprecedented demand for new livers, increasing the average wait for a transplant from days in the early 1990s to years today. And doctors say the problem will get worse as the virus comes of age.

 Sentara Norfolk General Hospital has been trying for three years to get state approval to bring a liver transplant program to Hampton Roads. Currently, patients from Hampton Roads must travel to Richmond or farther.

 In July, an appeals court overruled a decision by the state health commissioner and approved the program. The commissioner then appealed to the Supreme Court, which will decide by month's end whether to hear the case.

 ``We're seeing the beginning of an epidemic,'' said Dr. Michael J. Ryan, of Digestive and Liver Disease Specialists in Norfolk. ``Hepatitis C is responsible for 8,000 to 10,000 deaths a year right now. It is expected to reach 40,000 deaths in the next 10 years.''
 
 

Early in Ryan's career, no one had heard of hepatitis C.

 It was lumped into a category called non-A non-B hepatitis until it was identified by researchers in 1989. Even then, it was a few years before doctors realized how devastating the disease would be.

 ``We used to think it was relatively benign,'' Ryan said. ``We weren't seeing a lot of people getting cirrhosis. Now, we know that's because they were in the early stages of the disease.''

 No one knows exactly how long the disease has been around.

 What they do know, Ryan said, is that the transmission of the virus took off in this country in the 1960s and 1970s when snorting cocaine and shooting heroin were growing pastimes.

 From there, it seeped into the blood supply, tattoo parlors and body piercing shops. It spread undetected until 1990 when a test was developed to screen blood for the virus. And it now threatens to surpass AIDS as an epidemic.

 A few people overcome the virus without medical help. But most develop a chronic infection. Of those, some live a lifetime with only moderate damage to their livers. Others aren't as lucky.

 Ryan sees about four or six new hepatitis C patients a week, many of whom already have serious liver damage.

 There is no sure-fire cure. The approved drug therapy eliminates the virus in less than half of cases. Some simply don't respond to the drugs. Others suffer such severe side effects that they can't stay on the drugs.

 And once patients develop cirrhosis, their only hope is a transplant. 

``There are about 4,500 liver transplants a year in this country and 12,000 people on the waiting list,'' Ryan said. ``The numbers don't add up. People are going to die. That's why it is so important to get to these people early.''
 
 

Ryan and his colleagues are optimistic that in the next five years better treatments will emerge. Researchers are trying to develop a vaccine and a variety of new drugs.

 Dr. Mitchell Shiffman at the Medical College of Virginia in Richmond participated in a clinical trial of a long-acting form of interferon, a drug that triggers the immune system to attack the virus. He described it as ``the biggest advance'' to date in the treatment of hepatitis C.

 The drug permanently eliminated the virus in about four out of 10 patients in the study, Shiffman said. It suppressed the virus in another three of the 10 while they were on the drug, but the virus returned when they went off it.

 The statistics are just slightly better than for the current approved therapy of interferon and ribavirin.

 But, Shiffman said, the patients suffered only mild side effects, giving him hope that the drug could be used over the long haul to stave off the virus and prevent it from damaging the liver.

 ``We're on the rapidly rising phase in our knowledge and our success in treatment of hepatitis C,'' Shiffman said.

 In the meantime, however, Ryan and Shiffman worry about the rash of people who are oblivious to the virus silently destroying their livers.

 ``We need to get to these people early because once they have cirrhosis, it's really too late,'' Ryan said. ``The earlier they get treated, the better off they are.''
 
 

Jacques, 61, isn't sure exactly when or how he got hepatitis C.

 He has narrowed it down to one of two blood transfusions he got as a child -- one after a bicycle accident in 1946 and the other after a roller-skating mishap in 1948. He figures he has lived most of his life with the virus.

 But for years, he never had any symptoms.

 He spent 22 years in the Navy as an aviation electronics technician, worked another 20 years repairing office equipment and installing communications systems, married and raised three sons before any symptoms emerged.

 He learned in August 1997 that hepatitis had destroyed his liver. When he was put on a waiting list in January 1998 at Medical College of Virginia, he was told to expect a two- to five-year wait.

 But his condition deteriorated faster than anyone predicted. Twice that spring he wound up back in the hospital. And on July 15, 1998, he got a new liver.

 ``I realize more every day indeed how close I was to death,'' he said.

 Jacques has adjusted well to his new liver. At six months and again at a year, he showed no signs of rejecting the new organ. But at the year mark, he learned that the virus had begun attacking his new liver.

 He remains philosophical, saying he will worry about it in another decade or so. He knew it was a matter of time.

 ``In the case of hepatitis C, a transplant isn't a cure,'' he said. ``The virus is still there in your blood. A transplant becomes a treatment, one that extends the amount of time to find a cure.''

Harriet Banks, 64, began to feel tired, achy and feverish shortly after she had lower back surgery in the summer of 1982.

 At first, she thought it was the flu. But when she still felt sick months later, she went to her doctor. A battery of tests resulted in a diagnosis of non-A non-B hepatitis. Her doctor told her she would get better. She didn't.

 ``I felt like I had the flu all the time,'' she said.

 Battling her exhaustion, Banks returned to work in spring of 1983 as an assistant vice principal at a Virginia Beach elementary school. A few years later she switched to teaching, hoping the long summer vacations would ease her load.

 Then, in 1990, shortly after the hepatitis C virus was identified, she was told she had the disease. She retired the next year. And for a while, life went on much as it had since she first fell ill.

 In 1997, things got worse.

 Banks could barely stay awake. She couldn't drive, go to Bible study or play with her grandchildren. As the toxins her liver could no longer process seeped into her blood, she became disoriented and forgetful.

 ``It wasn't a good feeling to know that I was not in control,'' she said.

 She had developed cirrhosis and needed a liver transplant.

 While she sought to get on a waiting list, she and her doctor decided to try drug therapy. She knew it was a long shot. The drugs eliminate the virus in only 35 percent of patients. The odds are worse for those who have cirrhosis.

 Three times a week, she got shots of interferon and ribavirin. After six months, it was clear that the drugs weren't working.

 In January, Banks got listed at a liver transplant program in Fairfax.

 Her condition has stabilized somewhat since then. She has more energy and clarity of mind than she did a year ago. And she prays those are signs that her liver will last until a new one becomes available.

 ``Every now and then, I think about the future and I hope to see my grandchildren grown,'' she said. ``But none of us has that guarantee.''

Tracey Schneider, 29, went to a Texas hospital nine years ago with what she thought was a bad case of food poisoning.

 The doctors ran some tests and told her she'd gotten hepatitis A, probably from something she'd eaten. They could give her some medication to make her feel better but the hepatitis would go away on its own.

 That was the good news.

 The bad news was that she also had hepatitis C. They told her that the virus attacked the liver, that it killed some people and that there was no cure.

 She didn't know where she'd gotten it. Maybe from a dirty needle she used to inject crystal methamphetamine into her veins. Maybe from one used to ink a tattoo onto her skin.

 All she knew was that she had it, that it made her tired and queasy, and that there was nothing she could do about it. For the next year, Schneider ignored the disease and kept living the wild life.

 ``It took me a while to come around and realize what it really meant to have hepatitis C,'' she said.

 What she realized was that she wouldn't be around to see her infant daughter become a teen-ager or a young woman if she didn't straighten out her life and start taking care of herself.

 She got clean and stayed clean. She gave up alcohol because she knew it was devastating to her already weakened liver. She moved to Norfolk and married. She stayed home to raise her daughter, now 10, and her son, now 6.

 ``It was hard knowing that I had done this to myself and that I might have to pay for it with my life,'' she said.

 But she faced the disease head on, as her condition worsened from inflammation of the liver to fibrosis, a precursor to cirrhosis. She struggled to keep weight on her 4-foot-11-inch frame. She got used to feeling sick.

 Then, in 1997, her doctor suggested she participate in a clinical trial with a Dr. Shiffman at the Medical College of Virginia.

 Schneider made it into the study. She would get one shot a week of the long-acting interferon for a year. The flulike side effects were relatively mild and usually only lasted a day.

 Now, a year after the treatment, there are no signs of the virus in her blood, no signs of the scarring it caused to her liver. And she can't believe how good it feels to be healthy again.

 ``I don't know how I got so lucky,'' she said. ``But many people in the study weren't so lucky. And there's a lot that still needs to be done.''