Originally published in Scarlet Letters, August, 2002
In March 2002, Hepatitis C, a disease which had gotten relatively little media attention up until that point, was suddenly booted to the front pages: actress (and unwitting porn star) Pamela Anderson confirmed long-standing rumors that she had the disease. The news came out of the middle of her bitter, much-discussed divorce from her husband Tommy Lee. With Anderson’s revelation and the accusation that Lee had given it to her through a shared tattoo needle, the coverage was ratcheted up several notches. The press typically treated the story with doe-eyed sympathy for “Pamela’s tragedy” mixed with sly implications about the trashy lifestyle that surely must have brought this down upon her head.
Two San Francisco writers, Cara Bruce and Lisa Montanarelli, can relate. They don’t fight off the paparazzi, but they’ve been there in their own way: both are living with Hepatitis C. Montanarelli was diagnosed in 1990, one year after the Hepatitis C virus (HCV) was discovered, when she tried to donate blood and received a letter telling her that her blood couldn’t be accepted because it had tested positive for HCV. Bruce’s diagnosis came ten years later, when she was 27. In 2000, Bruce became intensely ill; she couldn’t hold down food, started losing weight, had fainting spells, and was so fatigued that she kept falling asleep at her desk.
Bruce’s symptoms turned out to be the result of seroconversion illness, something that happens to about 10 to 20 percent of people after being exposed to HCV as their immune system starts producing antibodies to fight off infection. A few months before Montanarelli’s diagnosis, she also went through a period of seroconversion illness — something that she describes as feeling like the worst flu she ever had. But because HCV was such a new thing, neither she nor her doctor realized what was happening.
At the time Bruce was diagnosed, Montanarelli had already been living with the disease for ten years; a mutual friend gave her phone number to Bruce, and Bruce, already feeling like she was living under a death sentence, used it. “Lisa was great,” Bruce says, now. “She assured me that I wasn’t going to drop dead tomorrow.”
Since that phone call, the two have not only formed a close friendship, but written a book called The First Year: Hepatitis C (Marlowe & Co.) that covers what a person needs to know, which questions they need to ask, and what decisions they have to make in that first year after being diagnosed for Hep C. Bruce herself was learning and asking the things covered in the book while writing it, so it is in a sense a direct result of her first year with Hep C .
Even though it’s been thirteen years since HCV was identified, it remains an extremely misunderstood disease in the public mind. Awareness of Hepatitis C is just high enough for a strong social stigma to attach to it, but not high enough for most people to know anything about its transmission or effects. One of the most common myths about Hep C , for example, is that it’s a sexually transmitted disease. Many of the news stories about Pamela Anderson’s status reinforced that myth, describing Hep C as a disease that is transmitted primarily through intravenous drug use and sexual intercourse. The first is indeed a high-risk behavior for HCV transmission; in using IV drugs, HCV infection is an even greater risk than the more-feared HIV, because while HIV is a relatively fragile and easily-destroyed organism, HCV can survive for long periods outside the body, and is not killed by the bleach that IV drug users often use to clean their needles.
However, HCV also differs from HIV in that it is strictly transmitted through blood-to-blood routes, not through semen or vaginal fluids. Part of the confusion stems from the fact that hepatitis B (HBV) is transmissible through these fluids and can be considered an STD. Hep A (HAV) is transmitted through a fecal-to-oral route, usually through contamination of food or water by small fragments of fecal matter. Vaccines are available for both HAV and HBV, and one of the first things that Bruce and Montanarelli recommend for people who have just been diagnosed is to get both vaccines in order to avoid co-infection. Having the immune system under attack by two or more versions of hepatitis makes the effects especially deadly.
Another myth about Hep C is that it is an instant death sentence. The best evidence against this is to spend an hour or more with Bruce and Montanarelli. Although both are realistic and open about the ways that Hep C has changed their lives, neither has the look of someone living in the Valley of the Shadow of Death. On the contrary, they are possessed of forceful, creative intellects and playful senses of humor. Nothing about them invites pity or maudlin sentiment; they would, in short, make lousy subjects for a TV movie about the Disease of the Week.
The longevity of its hosts is actually one of the keys to the success of HCV. Ironically, HIV is considered an “unsuccessful” parasite in the language of virology because it kills the host off so quickly, the biological equivalent of pouring kerosene all over the living room and lounging on the divan while the place goes up in flames. In contrast, Montanarelli says, “Only about 5% of people with Hep C actually die of Hep C . A lot of people are miserable and sick as all hell, but… most people outlive the disease.”
But like most people, neither Montanarelli nor Bruce knew that when they were first diagnosed. Because Montanarelli was diagnosed shortly after the discovery of HCV, she hadn’t even heard of it when she got the letter notifying her of her status. “It said basically that it could progress to cirrhosis in ten or twenty years — which is not actually what they think now — and I was 22 at the time. So I thought, ‘Okay, maybe I’ll be 32, 40, and that’ll be the end.’ I didn’t think I was going to have a particularly long life.”
Things have turned out differently than she expected in 1990; twelve years on, she’s living a relatively healthy life, as is Bruce, although the ways that they live have changed forever. For Bruce, the most difficult change was to stop drinking alcohol. According to her, “I really didn’t know what people who didn’t drink did.” She also says, though, that she lacks the energy to go out and party like she once did. Chronic fatigue is one of the most common symptoms of Hep C , and can be one of the most psychologically devastating for patients. Bruce has always led a creatively active life, and to some extent, still does, but Hep C has definitely limited it. “I used to be able to hold a forty-hour-a-week job and do Venus or Vixen (Bruce’s webzine), and publish books, and write articles… and I can’t [anymore]. And that’s sad.”
Along with chronic fatigue, depression is something with which almost every Hep C patient deals. The physical effects, in addition to feelings of isolation and fear, can cause crushing depression that makes it difficult for a person to interact with others or even take care of him or herself. One strategy Bruce and Montanarelli stress in their book is the importance of mourning. As people learn to deal with the new realities of life with Hep C , they may find themselves going through the five stages of grief that Elizabeth Kübler-Ross identified as common to people mourning the death of a loved one (denial, anger, bargaining, depression, acceptance). People may go through these stages in any order, simultaneously, or repeatedly. In fact, Bruce says that both she and Montanarelli are still going through them. No matter how much they’ve learned, or how much they’ve adapted, the emotional consequences are still there. Montanarelli says that “I think I’ve had acceptance around Hep C for years and years, but there are times when I go through some stage of mourning in relation to it…. There are times when I think, ‘Oh, maybe if I didn’t have Hep C , things wouldn’t be this way.’ There’s always this sense that it can be a scapegoat for lots of things.”
The stigma the junkie/slut imagery popularly associated with its transmission attaches to Hep C not only increases the psychological burden on patients because of misunderstanding and withdrawal by friends, but it actually obscures some of the methods of transmission. Most sexual behavior doesn’t count as risk behavior unless it involves blood, in point of fact. But there are many other behaviors which are, in fact, far riskier ¬ things you might not think could be a problem. Using someone else’s toothbrush, for example, is a common path of transmission, because brushing causes small cuts on the gums. Sharing razors and nail clippers, both of which can also draw small amounts of blood, carries similar risks. Worldwide, the most common path of transmission is through unsterilized medical instruments, but surgical standards make that rare in the United States.
Media reports often emphasize tattooing as a method of transmission, especially as Pamela Anderson’s case involved a shared tattoo needle. Statistically, though, the risks of becoming infected through everyday activities are far greater than those of tattooing. Getting a tattoo is a relatively infrequent event in a person’s life, and professional tattoo parlors maintain a high level of sterility, including the use of hospital-style autoclaves to clean equipment and discarding used inks and needles. How many of us are that careful with our fingernail clippers?
One of the most important risks for Hep C patients is the development of cirrhosis of the liver. Cirrhosis only occurs in about 10 to 20 percent of patients, but it has dramatic and potentially fatal consequences. Hepatitis of any kind causes scarring of the liver, called fibrosis. When fibrosis reaches such advanced stages that the scar tissue inhibits blood flow and other functions of the liver, the organ is considered to be cirrhotic. The malfunctioning of the liver can produce symptoms that include osteoporosis, jaundice, weight loss, swelling and leaking of blood vessels, and slowed blood clotting. Blood clotting problems can also lead to an increased risk of hemorrhagic stroke, where a blood vessel leaks into surrounding brain tissue. Cirrhosis is also a risk factor in developing liver cancer, which happens to about 1 to 4 percent of patients, as are drinking and smoking.
But as horrific as all these possibilities sound, they are manageable risks. The First Year talks a great deal about managing such risks, and what the options are for patients who are trying to live with them. The most common treatment is interferon therapy, which involves repeated injections over a 6-18 month period with proteins that inhibit or stop replication of the virus. Interferon treatment, however, is not only expensive, but many people find the side effects (including diarrhea, nausea, and mood swings) to make it as debilitating as the disease itself.
Because of the side effects, and because both Bruce and Montanarelli have a relatively low level of fibrosis and are therefore not at high risk for cirrhosis, they have so far been able to forgo interferon therapy and opt for taking care of themselves through a combination of diet, exercise, and alternative medicines. Montanarelli says that they’ve both had very good experiences with acupuncture. Herbal medications such as milk thistle are also options for Hep C patients, but Bruce does emphasize that “Herbs are medication, and you have to be careful about them…. Some herbs are liver-toxic, like Kava Kava. And if you mix herbs, you could have a bad effect.” Bruce recommends that Hep C patients who are interested in using herbal therapies go to a herbalist or naturopathic physician who can advise them on the proper combinations and amounts to take, rather than self-medicating.
Bruce and Montanarelli are equally realistic about the plentiful scams and miracle cures that masquerade as alternative medicines. Their favorite example, which causes both of them to dissolve into helpless giggles, are the ads frequently found on Bay Area telephone poles which push selenium as the cure not only for cancer and all forms of hepatitis, but also for Communism, Saddam Hussein, and Satan. “If you go to the web site,” Montanarelli says, “It looks seriously like the side of Dr. Bronner’s soap bottles. One of the things that we talk about in recognizing scams is anything that… points to one thing as either the cause or the cure for everything [is probably a scam].”
Of course, the thing that gives such scams the ability to exist and even thrive at all is the fact that most people know so little about Hep C , and when they find themselves faced with it, believe (as Bruce and Montanarelli did originally) that they have no future and no hope. Perhaps Pamela Anderson’s case will help spread the facts. One thing that Anderson has emphasized repeatedly is that she’s not dying. In a recent interview with Jane magazine, she instead treated the subject with humor and good cheer, saying that “Now I have people coming out of the deli hugging me because they think I’m dying. I tell them, ‘I’m not dying, I’m fine. But if you wanna give me a free sandwich, go ahead.”
Like Anderson, Bruce and Montanarelli have handled their situation with a lot of humor and obviously have a lot of living left to do. Bruce sums up her own thoughts about the future by saying with plain conviction, “I think Lisa and I are going to be just fine.” It’s easy to believe her.