Ask the average American about hepatitis C, and there's a good chance you'll get a blank or befuddled stare. It's the sort of disease someone's heard of, but can't quite recall how it spreads or what it does. What's worse, upwards of 3 million Americans—75 percent of whom are baby boomers—have the virus but don't know it. That's because this population was likely infected in the 1970s and 1980s, amid high rates of hepatitis C infections, but may not be showing any symptoms—yet. The leading cause of liver cancer and liver transplants, hepatitis C can become fatal if it progresses to liver disease.
In a telephone briefing last week, in which the Centers for Disease Control and Prevention (CDC) urged all Americans born between 1945 and 1965 to get tested for hepatitis C, the agency's director, Thomas Frieden, realized that he, too, required screening. "As I've been conducting this briefing, it has occurred to me that I was born during that time period, and as far as I know, I haven't been tested," he said. He had his tonsils out as a boy, for example, referring to one of the many possible ways that someone could be exposed to the virus. Hepatitis C is transmitted by blood and has spread, for example, through blood transfusions and organ transplants that took place before 1992—which marked the start of widespread screening of the blood supply—as well as through needles for injection drug use or tattoos, and even razors at a barbershop or nail salon.
A big part of the problem is the symptomless nature of hepatitis C. It can take 30 years for people to show any signs of the virus, and by then, it may be too late for effective treatment. If detected in time, however, promising new treatments can cure the disease. Hence, the CDC's effort at "catching up our screening recommendations" to these medical advancements, Frieden says. The new, age-based guidelines build on the CDC's current risk-based ones in the effort to "identify these silent infections" in as many as 800,000 Americans, Frieden says.
So what does this mean for you? And what can you expect, should you find out you're carrying the virus?
If you're between ages 47 to 67, see your primary care doctor for a basic test, which is relatively inexpensive and typically covered by health insurance under routine medical care, says John Ward, director of CDC's Division of Viral Hepatitis.
This test determines if you carry the antibody for hepatitis C, and if it comes back positive, it's critical to take the next step—another test called HCV RNA to determine whether you are currently infected with the virus, says Andi Thomas, president of HealthPro Solutions, a nonprofit that helps people with chronic disease.
"I am panicked about the dropout rate," she says, noting that widespread failure to follow through with the second test has stood in the way of proper care. While the new guidelines clarify the importance of the second test, it can be costly, she says. In response, her organization announced Tuesday a program to provide baby boomers with hepatitis C testing and counseling at a reduced price. Called Health-C, the project is a partnership among HealthPro, PersonaLabs, and The Support Partnership, a toll-free helpline (877-Help-4-HEP). "Without good social networking and good peer counseling and meeting other people who have been through what you've been through, it can be a lot to handle," says Thomas, a former sufferer. Like so many others, she learned that she had the virus by accident—through testing in preparation for a medical procedure. She got the news from her doctor by phone. "I was in a corporate lunchroom, huddled in the corner with my hand over the mouthpiece," she says. Her doctor's advice: "Just don't bleed on your kids."
Thomas, who was cured of the virus in 2004, says there is "still a long way to go" for primary care doctors and family practitioners to understand the need to screen patients and refer them to specialists for treatment. And part of the CDC's new effort, a campaign called "Know More Hepatitis," includes education and training with consumer and medical groups.
"I think for this to really have an effect, it's got to be driven from both the provider side and the consumer side," says Michael Ninburg, executive director of the Hepatitis Education Project, based in Seattle. "We don't have the luxury of time here," he says, noting that boomers are quickly aging into Medicare and, in some cases, out of eligibility requirements for treatment.
If you do have the virus, you'll need to see a hepatologist or gastroenterologist, says Ryan Ford, a transplant hepatologist with Emory Healthcare, associated with Emory University in Atlanta. But Ford says patients ought not panic. Even if you are infected with hepatitis C, that doesn't necessarily mean you have liver damage, which puts you at risk for cirrhosis, the final stage of liver disease, and liver cancer, he says. If cirrhosis hasn't set in, today's medications are both better tolerated and more effective. "You could argue several years ago that testing people for hepatitis C may not have changed the outcome," he says.
"It's a curable condition now," Ninburg says. This "next generation of therapy"—drugs that were approved last year—have brought the cure rate from 40 to 75 percent. "We have the potential to eliminate hepatitis C in this country," he says."You can get treated and cured, but first you have to get tested and diagnosed."
Learn more about testing and treatment for hepatitis C through these resources:
• The CDC's "Know More Hepatitis" Campaign: http://www.cdc.gov/knowmorehepatitis/
• The Support Partnership: www.help4hep.org and 877-HELP-4-HEP (877-435-7443)
• Hepatitis Education Project: www.hepeducation.org
• National Viral Hepatitis Roundtable: http://nvhr.org/
• HealthPro: www.healthpro.us