Carol Westmoreland didn't think much about it when her body began to feel tired. Working 14-hour days as a client consultant, fatigue had become part of her job. One day in June 1997, she slowed down enough for a doctor's appointment, and what started as a routine physical soon became the unthinkable.
Westmoreland was diagnosed with hepatitis C already in its late stages. Doctors estimated she had had the illness for at least 15 years. "I was already at stage 3 to 3 1/2 when the doctor found it, but [fortunately], I had no cirrhosis [of the liver]," Westmoreland says during a hepatitis C support-group meeting. She was immediately placed on the organ-donor list, given a short time to live and an even shorter time to find a donor. "I got my liver totally by coincidence," she says. "The donor had hepatitis B, and I had taken the hepatitis B vaccine for an overseas trip. Of the people that matched the donor, I was the only person on the list who had had the vaccine." After only four months, Westmoreland received a new liver.
Although she takes 30 pills a day and spends $2,200 a month on prescription drugs, Westmoreland is one of the lucky ones. A twitching in her hands is the only remaining trace of her illness.
The People's Disease
Westmoreland is one of the four million Americans (estimated by the Centers for Disease Control and Prevention) affected by the liver disease, one out of every 50 people. Although more than four times more people are infected with hepatitis C as have HIV, most of the carriers don't know they are infected.
"About 80 percent of people who have hepatitis C don't know it," says David Sloas, a gastroenterologist with the Gastroenterology Center of the Mid South. "Many people are not aware that you can have hepatitis C and not have unhealthy liver enzymes. Until the disease becomes advanced, it usually causes very little in the way of symptomatology. That's why it's not picked up unless someone has routine screenings and the doctor notices that their enzymes are elevated or unless they give blood."
The hepatitis C virus (HCV) gets its name from the inflammation (itis) of the liver (hepat) caused by the virus that lives inside liver cells and reproduces. Like hepatitis B, hepatitis C is a blood-borne disease. Because tests were not developed for the C-type virus until 14 years ago, the virus spread silently for years through blood transfusions (before 1992), needle sharing, and tattooing. Many of its recognized victims are 40- to 60-year-olds who are seeing their doctors for other reasons, only to discover they have late-stage hepatitis. "[Hepatitis C] is not a typecast disease. It is an across-the-board disease with no respect for race or gender," says Sloas.
The American Liver Foundation reports that, following the increased number of blood donations made as a result of the September 11th tragedy, as many as 10,000 people nationwide learned that they were infected with hepatitis C.
No one knows how long hepatitis C has been around. Tests have long been given for the A and B types of the virus. But not until 1988, through DNA analysis, was type C isolated. Before this discovery, the illness was known as "non-A, non-B hepatitis."
Laboratory tests used to detect hepatitis-C infection include the liver-enzyme test, which measures the amount of certain liver enzymes in the blood. High levels of these enzymes, especially alanine aminotransferase, can suggest liver damage. (Antibody tests are blood tests that look for antibodies against the virus in the blood.) A positive test means that a person has been exposed to the virus because the immune system has started to make antibodies in response to the infection. Doctors can also order viral-measurement tests to determine the amount of virus in the blood. A liver biopsy is performed after the disease has been positively identified. The procedure involves inserting a thin needle into the liver and removing a small amount of tissue to be examined. The biopsy can be used to confirm that a person has chronic hepatitis, to determine the condition of the liver, and to help establish the best treatment.
How Hepatitis C Is Spread
|Between family members|
|Job exposure to blood|
|IV drug use (shared needles)|
|Mother to child at birth|
|Source: American Liver Foundation|
David Prince was on a health kick when his illness was discovered. An avid runner, Prince visited his doctor in 1998 for severe foot fungus and stomach cramps. Thinking the symptoms were due to his exercise regimen, he was shocked to learn that he had been living with hepatitis C since 1975. "I think there's still a lot that's not known about hepatitis C," says Prince. "Some of it is still a guessing game."
The guessing game is due to the difference in each individual's response to the virus. "The ongoing inflammation of the liver in some people will progress to cirrhosis, in which the healthy liver is replaced with scar tissue," says Sloas. "More than 90 percent of the people who contract hepatitis C become chronic [with the disease lasting more than six months]. They do not 'clear' it, meaning they keep it, it stays active, they don't make antibodies to it. And that's the exact opposite of [hepatitis] B, in which 90 percent clear it and only 10 percent become chronic."
Most patients live from 15 to 30 years after the point of diagnosis, until, if they are fortunate, a liver transplant is performed. During this time, HCV steadily progresses. The longer a person is infected, the faster the progression. With time, the disease doesn't slow down, it speeds up. Advanced age and alcohol and tobacco use have been found to speed the progression, as have certain genotypes and subtypes of the virus, according to Sloas. There are six genotypes and many subtypes, with genotype 1 being the most difficult to treat. As the genotype number increases, the disease becomes easier to treat and can result in less damage. But Sloas warns that patients may develop several genotypes and subtypes because the virus can mutate. HIV co-infection increases the risk of cirrhosis and speeds up the progress of the hepatitis virus. Chronic HCV, left untreated, can also lead to liver cancer.
By the time many patients are diagnosed, they are already cirrhotic. Shirley Durst, leader of the monthly support group, explains that HCV is usually divided into four stages, with each stage progressing toward end-stage HCV. At age 57, she is at stage 4. "I have a very scarred, cirrhotic liver," says Durst. "I've had to have my spleen removed because of the scarring." Durst contracted hepatitis C from a blood transfusion. Since her diagnosis, she has held the support group together for 10 years.
The progression of the disease has made hepatitis C the leading cause of liver transplants. More than a third of the over 17,000 names on the transplant list have end-stage hepatitis C. The shortage in donor organs will result in almost 2,000 HCV deaths each year, according to the American Liver Foundation.
Estimated cost for a transplant and related procedures can be more than $300,000.
"I had my first physical ever in January , and my liver-enzyme levels were high. I had a liver biopsy two weeks ago, and that's when I found out that I had had hepatitis C for 25 years before [doctors] found it," says Lynne Andrews. Andrews is new to the support group and admittedly knew nothing about treatment for the disease.
HCV is usually treated with interferon shots (a protein produced by cells in response to infection by a virus) or alpha interferon with ribavirin. Ribavirin is used to slow virus replication and is taken in pill form. Treatment usually lasts six months to a year.
But not all HCV patients respond positively to interferon. "Interferon kicked my butt," says Westmoreland. "My body would not respond to it. My only chance was a transplant."
With the different combinations of drugs used to treat HCV, the treatment can be expensive, costing more than $20,000 for 12 months, and it can have uncomfortable side effects. "I had to take antidepressants to combat sudden mood swings," says Prince. "My appetite was bad at first, but luckily, I stayed the same weight." Some patients also report flu-like symptoms, including fatigue, fever, head and muscle aches, hair loss, and even worsening of existing heart conditions. Ribavirin may destroy some red blood cells, causing tiredness.
Even with the side effects, the treatments have a more than 50 percent success rate. The virus is never cured but goes into remission or is undetectable in follow-up tests.
The American Liver Foundation predicts that the death rate for hepatitis C will triple over the next 10 years, exceeding the number of deaths due to AIDS. The number of people diagnosed with HCV will also triple. Volunteer doctors on the foundation's hepatitis C commission estimate that 1.8 percent of a selected population is infected with the virus. "Based on the formula, these statistics seem too high," says Sloas. "Yes, the number of people diagnosed with HCV will triple, but we will see fewer new cases develop. [For example], hepatitis C patients only make up 5 percent of my clientele."
The 80 percent drop in new cases is due in large part to medical advances and lifestyle changes: Blood used in transfusions is now being tested for the virus; tattoo and body-piercing establishments must adhere to sterilization requirements for their instruments; and the danger of sharing needles for IV drugs is better known.
"Physicians' perceptions were different in the past," says Sloas. "Hepatitis C was thought of as a hippie, druggie disease. A lot of doctors thought a major infection source and transmission possibility was by sexual intercourse." However, hepatitis C is less likely to be sexually transmitted than hepatitis B, which involves a greater number of bodily fluids, like semen. "The lifestyle choice that is prevalent in new cases is the use of nasal drugs," says Sloas. Drug users inhale cocaine or other substances through straws. Often, nosebleeds result, leaving remnants of blood on the straw, which are then passed on to other users.
Celebrities have given the disease a face, bringing hepatitis C and its impact into the limelight. Former Baywatch babe Pamela Anderson admits to being infected with the disease while receiving a tattoo in Tahiti, and country singer Naomi Judd has also announced her infection. "I'm glad to see that the stigma has been removed from [the illness]," says Sloas. "We've got to teach kids about hepatitis C the same way we teach them about sex."
Looking Toward the Future
Winn Stephenson, president of the American Liver Foundation, Mid-South Chapter, sees education as the key to lowering HCV statistics. A hepatitis victim, Stephenson was diagnosed with auto-immune hepatitis during a 1985 routine physical and is unsure how he contracted the virus. Since taking the helm of the chapter in February, Stephenson's plan for the chapter has included developing education and support groups. He plans to organize monthly awareness campaigns and provide members of the organization with information on treatment advances. "We have to blast the word [about hepatitis] from every place," says Stephenson. "Nowhere is too small to give a quick elevator-length speech."
But his main goal is funding. "As a country, we've got to swing government funding to get better medication and treatment," says Stephenson. "At the end of the day, money buys power."
"At present, it is not cost-effective or necessary to test everyone for hepatitis C," says Sloas. "Only people who know they are at risk for previous exposure need to be tested. If you are at risk, ask your doctor to test specifically for hepatitis C."
New treatments are currently in development by such companies as Vertex and Eli Lilly. The treatments may replace the common drugs or be added to them in a drug cocktail, as with HIV viruses. None of these treatments will be available for several years.
"The disease is a long ride," says Prince. "You need patience because you have to wait on everything."
Some Symptoms of hepatitis C
- Fatigue is the most common symptom -- nearly all people with hepatitis complain of some degree of tiredness
- Muscle and joint aches and pains
- Anxiety and irritability
- Sleep disturbances
- Jaundiced eyes
- Less common symptoms include pain or discomfort in the abdomen on the right side, itching, nausea, appetite/weight loss, and mental fuzziness