The Other Virus
Although hepatitis C has often been called the "silent epidemic" (since 75 percent of people who carry the virus don't know it), with at least 4 million people in the U.S. now infected, hep C is starting to make itself heard.
"It's clear it's a significant public health problem that hasn't received the attention it needs," said Georges Benjamin, executive director of the American Public Health Association. "When I was in medical school it wasn't even talked about. We called it 'non A or B hepatitis' and it was this gray area that wasn't thought to be a big deal. It turns out it's a very big deal."
Such a big deal that former U.S. Surgeon General C. Everett Koop calls hepatitis C "an even graver threat to our public health" than AIDS. Nearly four times as many Americans are infected with the hepatitis C virus (HCV) as with HIV. Each year, 8,000-10,000 Americans die from hep C-related disease.
Some people carry the virus throughout their lives and never experience symptoms. Others will develop serious, even fatal liver disease. According to figures from the Centers for Disease Control, out of every 100 people infected with HCV, up to 85 percent may develop chronic liver disease; and anywhere from five to 20 people may develop cirrhosis over one or two decades. Up to 5 percent of infected people will die.
Those who become ill can require costly treatment regimens and in some cases liver transplants, of which hep C is the leading cause. With a shortage of donor livers, many patients die before receiving a transplant (the American Liver Foundation says more than 18,000 people are currently awaiting a liver transplant). As if these concerns weren't enough, researchers at the University of British Columbia have just discovered a link between hepatitis C and cancer, with HCV-positive individuals six times more likely to develop non-Hodgkin's lymphoma.
Unlike other forms of hepatitis, there is no vaccine for hepatitis C.
'C' Is For Confusion
The virus that causes hepatitis C was only discovered in 1989, so awareness is still slowly growing. Doctors and health promoters are doing their best to break the silence around the epidemic, believing that increased testing and education about prevention and management are crucial to stemming its spread. Education is also vital for those who are infected, since the harmful effects of this slowly progressing disease can be greatly reduced if it is detected and treated early on.
So how do people get hep C? Only through direct contact with contaminated blood – from syringes, unsterilized tattoo needles or contaminated inks, unsterilized manicure equipment, during accidents, and from blood transfusions prior to 1992. The virus cannot be spread through casual contact, and is only rarely transmitted through sexual contact.
Injection drug users – who, contrary to stereotypes, are a diverse group of people not confined to low-income communities – are at particularly high risk of contracting the disease from shared needles. Healthcare workers and others who come into contact with blood in the course of their work are also at risk. And hep C is running rampant in prisons, with the rate of infection in some prisons estimated at more than 80 percent.
Like most communicable diseases, the spread of hepatitis C could be greatly reduced through public awareness-raising, testing and subsidized treatment. But public health professionals agree there is a serious lack of emphasis placed on hepatitis C by government and private bodies, including a lack of funding for its prevention, treatment and education.
While hep C is an equal opportunity virus, crossing class and race lines to affect a wide range of people, the CDC says the disease is more prevalent among low-income people and people of color, with African-Americans the hardest hit group, followed by Native Americans, Hispanics and whites.
Slowing the Progression
Drug treatment, most often using a combination of the drug interferon and ribavarin, can significantly slow the progression of the disease and in some cases actually cure it. However this regimen costs up to $30,000 year, so it isn't an option for many uninsured or underinsured people, and community health providers note that many low-income people who could benefit from the treatment are steered away from it or never even told it exists.
"It is not my experience, in nearly 10 years of HCV and needle exchange work, that interferon is easy to get," said Laura Jones, a health worker with the group Test Positive Aware Network in Chicago. "We work with pretty marginalized people, and it's expensive, no one really wants to spend that much money on many of the folk who come through our needle exchange even if it would be beneficial to them."
Uninsured or underinsured people are also far more likely than insured people to forego checkups and delay treatment until absolutely necessary. Therefore they often aren't even diagnosed until their disease is in the later stages. Interferon therapy is not considered advisable in patients with advanced cirrhosis (scarring of the liver).
"Someone who doesn't have insurance and doesn't go to the doctor for regular checkups is more likely to find out about the disease when it's too late to do anything," noted Georges Benjamin.
On the flip side, interferon treatment often has severe side effects – some patients say the cure is worse than the disease, and complain that doctors prescribed interferon therapy without disclosing how rough it would be.
The Herbal Route
After her husband Kevin was diagnosed with advanced liver disease resulting from hepatitis C infection 10 years ago and told he didn't have long to live, Patty Krueger devoted her life to spreading awareness of HCV. Her husband decided to forego drug treatment, having heard horror stories about interferon's side effects. After some lifestyle changes, including quitting drinking and taking a medically approved herbal regimen, his health greatly improved. (Since some herbs, such as mate tea and pennyroyal, are toxic to the liver, doctors recommend doing thorough research before taking herbs or other natural remedies.)
Krueger said she gets calls from many people who have had bad experiences with interferon and feel they weren't adequately warned of the risks and side effects.
"It can be really nasty for some patients," she said. "We encourage people to get a second opinion and get all the information they can."
Krueger said when they started trying to publicize the disease, they met resistance from both governmental agencies and the general public.
"[Potential funders] would tell us hepatitis C isn't 'hip' yet," she said. "And it's a hard thing to raise money for. We'll have bake sales and people shy away, they act like we're giving out free samples of it or something!"
"There's a terrible lack of funding for hep C education, prevention, testing and treatment," added Tracy Swan, the Coinfection Project Director at the Treatment Action Group in New York. "We don't even have the money for surveillance of chronic and acute cases."
Free needle exchanges are considered to be one of the most effective ways to prevent the spread of the disease. Yet there is a federal ban on funding these programs, and there is often political and community pressure against allowing them to locate in a given community, because of the stigma and the erroneous belief that they encourage drug use.
With the death toll from hepatitis C expected to triple in the next 10 to 20 years, the "silent epidemic" could become a major burden on the health care system. Fortunately, there is some hope on the horizon.
"I think the pharmaceutical industry has realized that hepatitis C is a very common problem, and they're now pouring the resources into it that they poured into HIV and AIDS some years ago," said Dr. Adrian Di Bisceglie, medical director of the American Liver Foundation. "I think it will be a few years before we see the first of those drugs, though."