Bad Liver, Broken Heart: The Hollywood Hep-C Story (Details, October 1999)

60 years ago, the late great craggy carny barker of character actors Lewis Arquette found himself in the Soho District of Manhattan sharing a syringe with jazz musicians. It was the first and last time Arquette shot up.

In the summer of 1994, some 50 films and 5 kids (actors Rosanna, Patricia, David, Alexis and Richmond) later, the practicing Muslim struggled home to Hollywood from a pilgrimage to Mecca unusually exhausted.

“I dragged the wastebasket over to my bed, and threw up into it all night,” says the actor. “When the sun came up, I discovered it was full of blood.”

Eventually, doctors at Cedar’s Sinai Medical Center in Los Angeles determined that Arquette was suffering from esophageal bleeding caused by cirrhosis of the liver – complications of a virus that may well have been lurking in his body since that Soho night in 1959. At age 63 – only a couple of years from senior citizenship – Arquette finds himself part of Hollywood’s newest exclusive community: He’s a hepper.

Traditional Chinese doctors call hepatitis C “the dragon” for its propensity to subside and then flare up without warning. Headlines have been pegging this stealth virus – called HCV throughout the scientific community – as the “shadow epidemic” or “silent killer,” because once infected, you might not experience while it slowly destroys your liver by way of inflammation, fibrosis (early scarring), and finally cirrhosis, a condition that can be reversed only with a liver transplant. For the majority of those who need treatment, there is no cure. An estimated 4 to 5 million people (approximately 1 in 50) in the United States are infected with hepatitis C – more than four times the number who are believed to be HIV positive. Although the virus is contracted mostly through contact with infected blood (as opposed to HIV, which can be passed more easily in certain other bodily fluids), it is highly transmissible. According to the Center for Disease Control (CDC), unprotected sex with multiple partners might account for a big chunk of the 20 percent of reported cases with no identifiable risk factor (such as intravenous drug use).

“It can proliferate very quickly,” says University of Southern California hepatologist Dr. Maurizio Bonacini. He estimates that a health care worker who accidentally sticks himself with a needle contaminated with hepatis C has “a 10 times higher” of becoming infected than if it were with HIV. Bonacini believes that the virus can live outside the body – say, as a tiny drop on a razor – for up to two weeks.

This means that sharing any item that might come into contact with microscopic amounts of blood from an infected person – a nail file, a tooth brush or scissors – puts you at risk. So can using an improperly sterilized needle during tattooing, body piercing or acupuncture. It’s also possible to contract hepatitis C from the virus-tainted end of a cocaine-snorting straw or a rolled-up bill. The rising popularity of other inhaled drugs like Special K and crystal meth among ravers, tweakers and other manic miscreants also presents a serious threat of infection.

It’s no surprise, then, that a creative community such as Hollywood is particularly at risk. Actors, agents, producers, grips, gaffers, studio executives, and any rocker worth his bad boy reputation are all at risk of carrying the disease du jour. Los Angeles internist Dr. Ronald Sue treats many HCV patients at his Century City office, and is aware of thousands more who have passed through the Los Angeles Free Clinic, of which he is a former board member.

“The prevalence of hepatitis C is higher in Hollywood – people tend to get into the culture of drugs and sex,” says Bonacini. “The danger is there, and people should be aware of it. You need to change your lifestyle, and that part has not really been stressed enough.”

Five years ago, Casey (name changed at his request) – then a 34-year-old movie producer involved in top-dollar studio productions – almost threw out a letter he received from the Red Cross. Having recently donated blood, he figured it was either a thank-you note or a pitch for another donation. By chance he opened the letter and read: “Recently you donated blood at our facility… and your blood screened positive for hepatitis C.” “My whole fucking life changed at that moment,” he says.

Casey knows exactly how he contracted hepatitis C: He shot drugs in college. “All my friends who shot drugs with have hep C.”

Following his diagnosis, Casey fell into an emotional tailspin. “I was really scared,” says the Banana Republic-wearing, SUV-driving producer through a cloud of Cuban cigar smoke. “I was really sad, confused, and disappointed. I thought I had lightening in a bottle – I thought that somehow by the grace of God I had lucked out in those four or five years of insanity and recklessness and somehow escaped the ravages of AIDs. And I assumed there could be nothing as bad.”

Casey consulted a team of liver disease experts, but his first concern was for the health of his wife and six-month-old son. They tested negative. UCLA/Cedars Sinai Medical Center liver specialist Dr. John Vierling convinced Casey that the chances of passing the disease on sexually were remote, and there was less than a 6 percent chance of fetal transmission, so Casey and his wife had another baby. Their newborn girl was perfectly fine, but Casey began to unravel.

“You know,” he explains, “it gets down to little stuff, like don’t share an apple with your kids, because you bleed microscopically from your gums while chewing a hard apple. And your kids are teething, and will they get it? What about my son biting me? He was 18 months old, and kids bite. Make sure your kids don’t use your toothbrush, and don’t use your clippers when you trim your kids’ fingernails. You know, it’s really hard not to feel like a fucking leper.

“My whole life became about a secret,” he says with a sigh. “I didn’t wanna talk about it too much; I didn’t really want to complain about it too much. I didn’t wanna express how scared I was all the time. I still had to be a father. I still had to be a husband. I still had to be the breadwinner.”

Casey was physically fit and still wasn’t showing any symptoms that he was suffering from hepatitis C. But the knowledge that he was infected obsessed him, and he couldn’t stop thinking about it. When cooking for friends and family, insidious thoughts would creep into his head: “I wonder if any of them are worried I’m gonna cut myself and put it in the food and not tell them. What about that little knick I got on my finger?” Not an hour would go by without his thinking about the virus relative to something he was doing.

“It really haunts you,” he says. “It’s a fucking ghost, a shadow.” At times it nearly drove him to suicide.

His struggle with the virus destroyed his six-year marriage. “It threw me into a major depression,” he says. Not a clinical depression per se, but one that brought on intimacy problems, leading to more feelings of dread, sorrow and remorse. “I put on a good mask,” he says. “But that’s not a fun person to be with. I didn’t know it at the time; I know it now.”

Casey is now divorced, and several months ago he started on one of the recently developed combination drug therapies. He must inject himself with interferon three times a week and take oral doses of the antiviral drug ribavirin. So far the treatments seem to have kept the virus reasonably in check, but there’s no guarantee they will do so indefinitely. Drug therapies are effective in only 40 percent of hepatitis C patients.

There is a healthy supply of clean, loaded syringes with Casey’s name on them in his refrigerator; the irony doesn’t escape him. He sees his new dependence on needles as coming full circle.

The side effects of interferon include flulike symptoms, weight and hair loss, and in worst-case scenarios, profound depression and suicidal and/or homicidal thoughts. Well into his treatment program, Casey has avoided most side effects apart from some fatigue.

As a movie producer, Casey is not so much worried about being unable to perform on the job as he is about the stigma attached to the disease. He’s worried that employers hear “hepatitis C” and think “junkie” – not a good image for someone handling millions of dollars. So he maintains his secret and surrounds himself with the care, protection and understanding of other heppers he knows.

Jerry Stahl’s doctor took one look at his banana-yellow pallor six years ago, tested him, and told Stahl he had hepatitis C. H warned the then-39-year-old writer: “It can kill you.”

Nonetheless, Stahl continued to shoot heroin for several months, until he wound up on the “dope ward,” as it’s known to junkies, at Cedar’s Sinai. His attending internist, who had a ghoulish Rod Serling bedside manner, pronounced: “Well, we can make you comfortable in your last year.”

Stahl got defiant. He cleaned up for the final time and wrote his memoir, Permanent Midnight, which last year was made into a movie starring Ben Stiller.

To fight hepatitis C, Stahl sought the help of an acupuncturist. “The reason a guy like me can’t do interferon,” he says, “is because you really can’t give [a recovering] junkie a box of fresh needles and say, ‘Have a nice day and stay healthy.’ The word trigger doesn’t capture what that would do to a heroin addict.”

Stahl believes the acupuncture has helped, though he admits that the levels of the virus in his system sometimes surge upward. “Nevertheless, I have a lot more energy and no longer wake up feeling hungover without ever having gotten loaded.”

By 4pm, though, Stahl says, he is so fatigued that “I want to stick my head in the oven or fall off a fucking cliff. I have to work around the virus, because it’s like you’re living your life with your feet in cement blocks for at least half the day.”

Stahl, whose new book, Perv-A Love Story [William Morrow], comes out this month, boldly suggests a regimen of “working out and having as much safe sex as you possibly can” to his fellow heppers. “I’ll probably be dead at 50,” he says with a shrug. “But what the fuck, you know what I mean?”

For actors, the virus poses an excruciating set of problems. A veteran of screen, stage, and television, Eleanor (name also changed) found out a year ago that she has hepatitis C, and frets over what she’ll do if she’s called upon to act in a love scene. “Do you tell them or not?” asks the gorgeous 40-year-old. “They say you can’t get it from kissing, but I don’t know…”

“It’s a big dilemma,” says one manager-producer who did not want his name to be used. He says he would encourage his infected clients to other actors with whom they might have intimate contact, but he doesn’t believe they would be forthcoming, for fear of being blacklisted. He recalls how Rock Hudson and Brad Davis were on their deathbeds before it was publicly revealed that they had AIDs. “That’s the way Hollywood still works,” he says.

Eleanor has never shot drugs, never had a blood transfusion, and is neither pierced or tattooed. She has snorted drugs, though, and she’s also had unprotected sex with a drug-abusing ex-fiancé.

Regardless, she’s frightened, and more often than not feels like an “untouchable.” When she first tested positive, a doctor unnecessarily told her to tell everyone she had so much as kissed in the last two years. “I went and talked to the two guys I had dated, and their reaction was very bad,” she laments. She took one of them to lunch, and they didn’t make it past appetizers. When she told him about her hepatitis, she recalls, “He immediately picked up his cell phone and just walked out of the restaurant… and left me there. I don’t hear from him for three weeks.”

He eventually called her to apologize, but in the months since, Eleanor hasn’t dated at all, let alone had sex. “The thought of having to tell someone beforehand is hardly an aphrodisiac,” she says. “So, I’ve just avoided the situation entirely.”

Eleanor has put her career on hold for now and is spending more time with her young daughter. “I guess there’s a part of me that’s really grateful that I already have my child and that I’m not 25 years old looking forward to that.”

“Who gives a fuck?” says Chuck Lavalee when asked if he can be identified for this story. “Tell everybody,” he demands. In 1994, when he was 32, the wiry, blond surfer-boy-ish ex-junkie and music agent was diagnosed with hepatitis C just before joining the William Morris Agency. He suffered through both interferon and combination therapies, neither of which helped. Lavalee has watched the levels of hepatitis C virus in his system rollercoaster from the 30th percentile to almost normal, and back up again.

But he says his bosses supported him 100 percent, and that he returned the favor by giving 100 percent. “I had a very hard time getting out of bed,” he concedes. “But I went to work every day because I’m a lunatic.

As with Casey, this disease took a toll on Lavalee’s foundering marriage, but he still wouldn’t let it get him down. He met the dragon head-on and laughed in its face: He got a tattoo of two vital organs with a legend reading “Bad Liver, Broken Heart” on his forearm.

Lavalee recently moved to the East Coast after being hired by Metropolitan Entertainment, and event production and booking company; his most recent task was booking the alternative section of the Woodstock ’99 music festival.

“I’m stubborn,” he says. “I’m not gonna let this shit get me down. I suit up and show up. I do what’s put in front of me.”

As with many of the seemingly hopeless maladies of the mind. Body, and spirit, a cottage industry of alternative treatments for hepatitis C is springing up around Hollywood. But there are also far too many opportunists capitalizing on the fears and hopes of the afflicted. “It’s important not to confuse ‘natural’ with ‘harmless,’ cautions hepatologist Bonacini. Western-style physicians tell their patients that some approaches – for example, best-selling author Dr. Andrew Weil’s integrative approach (augmenting conventional medicine with natural remedies) or traditional Chinese medicine (including herbs and acupuncture) – certainly can’t hurt, assuming the primary physician is fully informed, and may well promote healing.

Celebrity nutritionist Gary Null, a regular on Livr! Regis & Kathie Lee, claims he can cure hepatitis C. He asserts that under doctor’s supervision, he used a protocol of intravenous vitamin C and other vitamins and supplements, coupled with what he calls “intravenous ozone,” or “supercharged oxygen,” (along with meditation and a change in diet and exercise) to cure an average of 4 out of 10 patients in less than a year, with no side-effects. He offers one of them LuAnne Pense, as a source to verify his claims and also readily gives contact numbers for two of his supervising physicians, who will, he assures, attest the same.

It turns out that LuAnne Pense never had hepatitis C; rather, she says that Null cured her of hepatitis B – one of several strains of hepatitis virus that the body can defeat on its own. One of Null’s supervising physicians, nutritional medicine therapist Dr. Martin Feldman, doesn’t want to comment because, he says he’s “not experienced enough in hepatitis C to make any really expert comment.” The other, family physician Dr. Peter Agho, says, “I really can’t categorically tell you that [as a result of Null protocols] we can’t detect any of the hepatitis viruses. The numbers go down, but they have not gone down to zero.”

Medical researchers are optimistic about the possibility of using bone-marrow cell implantation to repair failing livers, and of using protease and helicase inhibitors to stall or eradicate the hepatitis C virus. The goal, explains Bonacini, is to “suppress the virus for long enough until the infected cells turn over and the virus is ultimately gone. There’s a lot of hope.” He pauses. “I think.”

Hepatitis C specialists remain frustrated that the majority of their patients do not respond to anti-viral therapy. The National Institutes for Health’s projected budget for AIDs research next year is $1.8 billion, while HCV is expected allocated only $33.6 million. “It’s not as sexy as HIV, you know?” shrugs Dr. Sue.

Granted, hepatitis C can be so lazy in the system that many carriers die of other causes before the virus gets them. But about 10,000 hepatitis C sufferers do die each year – with that number expected to rise sharply – because they either do not respond to treatment or cannot find an organ donor. [Hepatitis C is not the number-one reason for liver transplants in the U.S.]

Health experts agree that widespread testing for hepatitis C should be done so that patients can be diagnosed with the virus early on and plan a course of treatment and take appropriate precautions against spreading the disease. Sadly, there is a glaring absence of public discourse about hepatitis C in Los Angeles. There are no public service ads in papers campaigning for testing. Heather Hamman, a producer for the hugely popular Dr. Dean Edell Talk Show, which is broadcast on L.A. talk radio station KFI-640, admits that hepatitis C is a “pretty hot topic” for callers, yet Dr, Dean has never discussed it. “I guess it’s not a sexy enough topic.”

Discussion of hepatitis C is springing up at Narcotics Anonymous and AA meetings in Hollywood, and a smattering of support groups specifically for people with hepatitis C have been started by heppers themselves. Few celebrities have come forward to raise awareness of the disease. There is a red and yellow ribbon available through the Hepatitis Foundation International, but the organization’s chair, Thelma King Thiel, sighs, “We’ve had a lot of trouble getting people to wear them… People are afraid.

Meanwhile, there are probably a lot of young people walking around with the virus who, if they knew now, could change their lifestyle and live a happy, healthy life. Those who test negative would gain piece of mind as well as an education on how to stay that way.

Hot off the success of the Blair Witch Project and currently shooting Navy Divers with Robert DeNiro and Cuba Gooding Jr., 24-year-old actor Joshua Leonard has a lot to live for. He says he rarely hears about hepatitis C in his social circles. “The only time I was really informed was when I went in for an HIV test about a year and a half ago in New York City.” A technician explained that it was a disease that could kill you and could be transmitted through intercourse or IV drug use. “They educated me to a certain degree,” recalls Leonard, “But the hepatitis C test was an extra 20 bucks, and I almost didn’t get it because I knew so little about it.”

Recently, Leonard went to a Los Angeles Community Clinic for a follow-up AIDs test. He was surprised that the topic was never raised. (Leonard is free and clear of both viruses).

Losing body mass fast and with his viral numbers skyrocketing, Lewis was put in an intensive care unit and bumped to the top of the organ recipient list 10 months after starting at the bottom. Depending on the availability of donors, it can take anywhere from 16 months to two years or more for an organ to become available – if one becomes available at all.

“I began to really waste away, and it became simply a question of the will of Almighty God whether he would choose to spare my life or not,” says Arquette. “I had to kind of prepare for the ‘not’ and try to straighten up my shit and let my children know how much I love them and things like that.”

A year ago this May, Arquette’s new liver became available. Early one morning I was put under anesthesia. “And the next thing I know, I wake up and there’s my sweetheart’s face and my son-in-law [Rosanna’s husband, restaurateur Jon Sidel] staring at me, smiling, and saying ‘Hi Lewis, it’s real good to see you.” Arquette’s tainted blood is now being filtered by the liver of a 27-year-old athlete who died in a motorcycle wreck. His transplant operation has been successful, but for others, all too often a new organ is rejected, and the patient dies.

L.A. nightclub fixture Eliot “Kidd” Cohen – he was the lead singer and guitarist for the 80s rock band The Demons – was not as lucky as Arquette. The curly-haired, wide-eyed musician dies earlier this year after his new liver wouldn’t take. Young Hollywood turned out in droves at Johnny Depp’s nightclub, The Viper Room, for Kidd’s memorial.

There were flowers, a portrait of Kidd, and an open mike on the podium. Some 200 of his friends shared stories celebrating his short life. If everyone in that room gets tested for hepatitis C, they might not have to meet like that again for a very long time. They could celebrate life while they’re still living.