Health
Killer C
It’s possible to catch hepatitis C any number of ways—even by sharing a razor or a toothbrush. You may feel fine, but it could be killing you.
(Page 2 of 2)
One might think that the lessons of the ongoing AIDS epidemic would have prompted public health officials to seriously monitor this other doomsday virus, but precisely because the public health establishment was so preoccupied with AIDS, hep C quietly gathered dust in the “in” box. It wasn’t until the late eighties that a reliable blood-screening test for hep C was perfected and not until 1992 that it was implemented to purify the nation’s blood supply. And though the test proved marvelously effective, practically eliminating hep C infections caused by transfusions, for some reason public health officials couldn’t decide what to do about the thousands of blood recipients like Doug Bedell who had had transfusions before the blood supply was screened. A Food and Drug Administration advisory panel confabbed on the matter, as did the American Association of Blood Banks, but neither could decide whether or how to track down and inform members of this unfortunate populace. The “look back” process—identifying which blood and blood-product recipients were likely to have received hep C—tainted blood during hospital stays before 1992—would be expensive, time-consuming, and inexact. Donors who subsequently tested positive for hep C would have to be matched with earlier recipients of their blood, but blood banks and hospitals tend to have reliable records only back to 1988. Besides, since only an estimated 7 percent of the infections came from transfusions, and this particular strain of hepatitis had no cure, why unnecessarily alarm people who probably weren’t suffering anyway?
The problem was, while the screening test had helped to reduce the overall rate of new infections, more and more previously infected people like Doug were turning up sick with the disease. So last year the Department of Health and Human Services ordered blood banks to proceed with a look-back process. This past summer letters started going out to some 60,000 individuals who might have received hep C—tainted blood via transfusions during operations performed between 1988 and 1992 (more than 200,000 such blood recipients had died in the intervening years for reasons unrelated to hep C). But that mailing is going to snag only some of the transfusion victims (it won’t get Doug, for example), and none of those who contracted hep C via so-called lifestyle choices, otherwise known as drugs and sex.
“If you were simply alive during the seventies, you could be at risk,” quips Austin entertainment manager-promoter T. J. McFarland, who has known of his chronic hep C infection since 1993. McFarland, 51, has traced his infection to a tattoo he got when he was 22 years old. “I remembered that the guy who gave it to me had bright yellow eyes,” he says.
Twenty-one-year-old Daniel Gullahorn is sure he has had hep C since birth: Because of pregnancy and delivery problems, his blood had to be completely replaced several times shortly after he was born, and he had to have many transfusions as well. “Given that it was 1977, and long before the screening test, that pretty much had to be it,” he says.
Gullahorn was first diagnosed with the infection at age fifteen. After giving blood before undergoing a back operation, he received a letter informing him that the blood had tested positive for hep C antibodies. Follow-up testing, however, indicated that the initial test had been a false positive.
Gullahorn was relieved—until, after donating blood again at age seventeen, he got another letter: “I remember one of my coaches asked how I was doing, and I told him about the hep C, and he said, ‘Stay away from me.’ It was an awakening.”
Gullahorn continues to be amazed at how elusive hep C is. It’s hard enough to discover that you have it, he says, and often harder still to figure out how you got it. “Then you have no simple way of knowing how advanced it might be,” he says. “I had liver tests a month ago, but how do I know that the virus is not kicking in right now and my enzymes aren’t shooting through the roof?” Like a lot of hep C sufferers, Gullahorn has already had one liver biopsy and plans to have another soon. “With hep C,” he says, “you learn real fast that you’ve got to take matters into your own hands.”
Like AIDS patients, people with hep C have not been content to sit idly by until someone in a white coat says he knows something. Hep C Web sites and support groups have burgeoned almost as rapidly as the number of cases. Gullahorn and his father, Jack, a managing director of the Austin public relations firm Public Strategies, have started the Texas Hep C Connection (512-432-1787; www.hepc.org), an information clearinghouse on the disease that is part of a national network headquartered in Denver (800-522-4372; www.hepc-connection.org). T. J. McFarland has taken it upon himself to seek out herbal treatments for the disease, such as milk thistle, which is believed to promote the growth of healthy new liver cells. And Doug, a computer aficionado, has found comfort and valuable information on hep C while surfing the Internet. Some doctors, like Joseph Galati, however, worry that such patient activism will increase the amount of misinformation out there.
Maybe so, but hep C victims aren’t about to ignore the lessons of AIDS, one of which is that the squeaky wheel always gets greased. Given that government expenditures on hep C are a measly $6 per infected person—compared with $1,600 per AIDS patient—heppers realize they need to generate as much buzz as possible to get noticed. “There’s a lot of debate about who should be our front man,” Doug says, naming celebrities infected with hep C: “Evel Knievel, Naomi Judd, David Crosby?”
Doug tried interferon early this year, but it didn’t work as well as he had hoped and he has since switched to the Schering-Plough cocktail. He says his liver-enzyme activity has returned to normal, though other testing shows that the virus is still alive and well in his blood. After a similar failure with interferon back in 1994, McFarland is considering the cocktail, but in the meantime he’s sticking with large daily dosages of milk thistle, vitamins, and springwater. “I really do think a lot of this is just how well you take care of yourself,” he says. Daniel Gullahorn couldn’t agree more: “Until my testing shows I have damage to the liver or they come up with medication that doesn’t make you sicker than you already are, I’m going to stick with clean living.” He suggests that anyone who can identify a risk factor in his medical history (IV drug use, a transfusion before 1992) or has elevated liver enzymes on a standard blood test should ask his doctor to perform a hep C screening test.
Joseph Galati believes that as patients become better educated, so should primary-care physicians. “This is not like someone who walks in and you see they have elevated blood pressure and so you prescribe antihypertensives and tell them to exercise more,” he says. “When liver enzymes show up elevated, it can mean something or not much. So unless doctors begin asking patients about at-risk behavior for hep C when they see those elevated levels, someone could go on for years suffering serious liver damage and not ever know that he’s sick until it’s too late. Hep C can be easy to miss.”
Even for those who know they have it, hep C remains a disease that is too easily forgotten or ignored, despite its current high profile. As Doug Bedell says, “It’s hard sometimes to psych up for the struggle, you know, when you really don’t feel bad.”
Pages: 1 2
My Library
