By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
Helen Clark still remembers walking into this room for the first time. It was spring 1998 and she had recently been diagnosed with hepatitis C. All she knew about the liver disease then was that it could kill her--sometime, somehow. Even her own doctors couldn't explain exactly whether or why the virus would attack her immune system. It wasn't like cancer, or back pain, or AIDS. It was a clandestine disease that could easily disguise itself, fade away without warning, and then return unannounced, even after being diagnosed and treated. "I felt so isolated," Clark, who is now 59 years old, recalls of those early months. "I had reached the point where I wanted to talk to someone so badly that when I was out shopping I had this urge to go up to everyone walking around the mall, shake them, and say, 'Do you have hepatitis C? Do you know anyone who does?"
Clark got the answers she was hoping for when she walked into a LiverHope support-group meeting. In the church basement that night, she gathered up a small paper storm at an information table stacked with articles from niche publications and medical journals. She learned that her disease didn't even have a name until 1989, that it could play possum for decades before being discovered, and that many doctors were still slow (and sometimes unwilling) to test those most at risk of carrying the virus. She listened to guest speakers from pharmaceutical companies that were working to find a cure; they were hopeful but cautious, Clark learned, in that even the most promising drug therapies were accompanied by intensely negative side effects and had a 75 percent failure rate. She met dozens of other people who had also been stigmatized in ways Clark knew all too well: the awkward silence of her neighbors, the friend who'd stopped calling. (Hepatitis C can be contracted in a number of ways, but because the virus is commonly spread by contaminated needles during intravenous drug use, it has often been portrayed in the media as a "junkie's disease.")
After that first meeting, Clark, who has been rendered so thin by her illness that it seems she might suddenly blow away, turned into a crusader of sorts. When the founder of LiverHope moved away, Clark and her friend Patricia Buchanan, who was diagnosed in 1995, took charge of the group. In short order the 30 folding chairs became their obsession. Most days the two women spend hours online, tracking medical trials being conducted by pharmaceutical firms, keeping tabs on the health-insurance industry, and doling out advice on subjects ranging from liver biopsies to massage therapies. They work the phones, encouraging reporters, public officials, and members of the medical community to invest the time and money necessary to educate the public and their doctors about the disease.
The federal Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, estimate that a minimum of 4.5 million Americans are infected with hepatitis C. The disease is already the leading cause of liver cancer and liver failure in the United States, as well as the number one reason for liver transplants. If current trends hold, in ten years 30,000 Americans will die as a result of hepatitis C annually--the same number as those who died of AIDS in 1996.
Beyond U.S. borders the figures are even more daunting. A year ago Egypt reported that 15 percent of its population was infected. In Europe there are 9 million people carrying the virus. Worldwide the number is approaching 200 million. "This is the most significant infectious disease of the 21st Century, in terms of total mortality," Alan Brownstein, president and CEO of the American Liver Foundation, observes from his office in New York City. "The problem is, hepatitis C is silent. The liver is a noncomplaining organ. So most of the time when people do finally get symptoms there has been so much damage that they're beyond the reaches of treatment."
In the two years since Clark and Buchanan teamed up, hepatitis C has made an appearance on the popular media's radar screen, if only briefly. At LiverHope meetings Clark always has copies of articles that were published in the New Yorker and Penthouse in 1998 (the latter "without the pictures," she notes with a grin). Both pieces, and a smattering of others written since, read like the public-health alert LiverHope is so hoping for. The stories also include passages that lead the reader to believe federal health officials are on the verge of making hepatitis C a priority. In the New Yorker piece, for instance, writer Jerome Groopman, a professor of medicine at Harvard, concludes that the surgeon general of the United States, Dr. David Satcher, is committed to fighting the "looming epidemic" and cites Satcher's intention to lobby for a public-education campaign. So far, though, that promise has gone unfulfilled.