By Ronda Kaysen
Penny Arcade is accustomed to being noticed. The 55-year-old performance artist has been a poster child for the East Village avant-garde art scene since Andy Warhol roamed the city. In recent years shes become a vocal proponent for artists living in this increasingly gentrified neighborhood. So when she was diagnosed with hepatitis C two-and-a-half years ago, it was only natural that she would slip into the role of unofficial spokesperson for sufferers of a disease that often strikes people living on the margins.
Arcade was diagnosed with hepatitis C virus, a blood-borne disease that attacks the liver, in the spring of 2003. Less than a year later, her 57-year-old brother-in-law, Guy Gouin, died of H.C.V. While Gouin lay dying, Arcade scoured literature about the disease they both shared as part of a quest to conquer her own illness.
When youre confronted with having an illness, you enter into a maze and its up to you to make a decision, she told The Villager in a telephone interview. We have to take responsibility for our own treatment. I had to really become an expert on hepatitis C to find out what was the most appropriate thing for me.
A chronic disease, H.C.V. has wildly different effects on different people. According to the New York City Department of Health, 10 percent of people clear the virus from their system after contracting it, but 80 to 90 percent become chronic carriers. Anywhere between 5 and 20 percent of carriers will develop cirrhosis of the liver. Of those with cirrhosis, between 1 and 3 percent will develop liver cancer.
H.C.V. has infected a large swath of the American population. About 4 million Americans have been infected with the virus. Of the 2.7 million carriers, 8,000 to 10,000 will die this year from complications. That number is expected to balloon to 30,000 per year by 2015.
A small virus that lives in blood, H.C.V. is quite easy to contract and far more prevalent than H.I.V., the virus that causes AIDS, although H.C.V. rates are much higher among H.I.V. patients than the general population. In New York City alone, between 200,000 and 300,000 people are infected with H.C.V., compared with about 90,000 New Yorkers infected with H.I.V. in 2003, according to the Health Department.
People who have injected drugs and those who had blood transfusions before 1992, when blood-screening tests improved, are most at risk. Although anyone in contact with infected blood, including healthcare workers and infants born to infected mothers, is at risk.
Since most people dont develop symptoms or serious liver damage for decades and some never do at all few know they carry a contagious disease that might ravage their liver.
Even though its set to be a pandemic in this country, very few people know about it, said Arcade.
In August, from the stage at Joes Pub on Lafayette St. where she performed The Essential Penny Arcade as part of the East Village HOWL! Festival, Arcade told her audience she had H.C.V. I want to make people aware, she told The Villager. Theres a lot of stigma to illness in this country
I spent a lot of time with people with AIDS and I know how people treat people with contagious diseases.
Ironically, Allen Ginsberg, author of the poem Howl for which the festival was founded, died of complications from H.C.V. He is not the only 60s icon struck by the disease. Phil Lesh of the Grateful Dead, who received a liver transplant several years ago, as did David Crosby of Crosby Stills and Nash, both suffer from H.C.V. Ken Kesey, author of One Flew Over the Cuckoos Nest and famous for his drug experimentation with the Merry Pranksters, died of liver cancer in 2001 and suffered from H.C.V.
Arcade is not entirely sure how she contracted the illness. During her youth in the East Village she was part of Andy Warhols Factory scene, appearing in the 1971 film Andy Warhols Women in Revolt. She also participated in the the Lower East Side drug culture of the late 60s when she was 17, she said.
But she also wonders if she might have contracted it during the four years she lived in Spain in the 1970s or while traveling in Thailand, India and Indonesia in the 1990s. She believes her brother-in-law contracted H.C.V. while serving in Vietnam. A 2002 survey of 597 homeless veterans found that 42 percent were infected with the virus, according to the Health Department.
Stigma might be part of the reason why H.C.V. is so rarely discussed in the public arena. Once theres a certain level of stigma, it becomes harder to give people accurate information about a disease and that can be really problematic, said Tracy Swan, co-infection project director for H.I.V. and H.C.V. at the Treatment Action Group, an AIDS advocacy group at Houston St. and Broadway. Theres something about human nature where people really wonder: howd you get that?
Miles Keaton Andrew, a 52-year-old author who contracted H.C.V. when he experimented with intravenous drugs as a teenager, has kept a blog, www.mkandrew.com, since 2001 about his experiences battling H.C.V. His blog has received a million hits in the past year. I understand the whole stigma thing, he told The Villager. There are a lot of people like me who might have experimented with drugs. Some of us got sick from it and it isnt anything to be ashamed about.
This week, Arcade began a 24-week-long treatment program in the hopes of curing herself. Already, she is sharing her experience with the East Village and Lower East Side community. In an Oct. 2 e-mail to the Federation of East Village Artists listserv, an organization founded to support the arts community here, Arcade penned, I start [treatment] tomorrow and I have no idea how I will feel, as each person is different. Although my understanding is that you feel worse when the drugs build up in your system.
A few days later, she wrote the group, Tonights [FEVA] meeting is supposed to be about health insurance. I am not attending as I have started serious medicine for hepatitis C and do not feel well enough to go out.
She plans to keep a diary of her treatment, which causes extreme flulike symptoms that Arcade compared to chemotherapy. I want to write about it, she told The Villager.
Arcade suffers from a strain of H.C.V. that is less common in the United States and more easily treatable, she said. People with her strain have an 88 percent cure rate after treatment, she said. The typical treatment for most American strains ranges from a three-month to a two-year drug therapy program. Treatment does not eradicate the virus in all cases. Some people, however, do not need drug therapy at all.
Before you go on Interferon a drug commonly used to treat H.C.V. you try to imagine the sickest youve ever been and you figure youll be that sick, but the truth is you cant imagine how sick youll be, said Andrew. For a year it completely consumes your life.
Arcade lived in the East Village during the AIDS crisis she moved there when she was 17 and remembers a time when there was little information about the disease that ravaged her community. A lot of us thought we were going to get it [AIDS] and we didnt get it, she said. Ten years later to find out that you have a potentially fatal disease is a huge shock.
Arcades self-anointed role as East Village H.C.V. spokesperson coincides with the July launch of an H.C.V. ad campaign by Hoffman La Roche, a pharmaceutical company. The campaign plastered throughout the citys subways, in magazines and newspapers depicts a mans face, severely beaten and bruised. The text reads: If Hep. C was attacking your face instead of your liver, youd do something about it. Ready to fight back?
The startling image of a brutalized face has not received a warm welcome from the H.C.V. healthcare community. Its rude and cruel and horrible and stupid, said Dr. David Ores, a general practitioner on Clinton St. Several of his patients suffer from H.C.V. What if you dont have insurance? What if you have no access to care? You cant even get tested. Whoever put up those posters, are they offering free healthcare?
Its extremely alarming, from a purely feminist perspective; could you imagine that ad with a woman whod been beaten black and blue? said Swan, adding that not all H.C.V. patients need treatment or develop serious liver damage. If you had hep C and you saw that, wouldnt you think Oh my God?
The ad was intended to alarm, said Bob Madison, a spokesperson for Hoffman La Roche. We really wanted to break through the clutter and do something to separate us from the noise; thats why its such a distinctive campaign, he said, adding that some response has been negative. This is a very dramatic call to action.
Arcade has a publicity campaign of her own in the works. She is currently working with the Lower East Side Biography Project, a media-training program, on a series of public service announcements she hopes will run on cable TV in the spring.
For those working in the health industry, Arcades decision to go public comes as a welcome voice in a silent arena. There is currently no federal funding for H.C.V.
Its extremely useful and its great that shes doing this, said Swan. Like with the H.I.V. activist model, its important to have people in the community sharing information about their experience.