The Growing Chorus
Sex, Drugs & Hepatitis C
The past two and a half months have been a time of both revelation and soul-searching for longtime Steamboat owner/Austin music advocate Danny Crooks. And it all started with a trip to the doctor to get Viagra. "Everything still worked, but everybody was talking about Viagra," recalls Crooks. "I went to my doctor and he said he thought everybody over 40 should have it.
"I hadn't seen him in five years and I'd always been a healthy guy. He said, `Since you're here and you never come in, I'm going to do some blood work on you.' He called the next day and told me there was a problem and I had to come back. They did some more tests. Two days later, I came back and they told me I had chronic hepatitis C."
You'll be hearing a lot more about hepatitis C in the coming years. An estimated four million Americans and 170 million people worldwide are infected with the disease. In the United States, the number of hepatitis C cases is now four times higher than the number of HIV cases, and about three-quarters of the people with hepatitis C don't even know they have it.
Hepatitis C is not a "musician's disease." Only a fraction of the people who have it play in bands, produce albums, or run nightclubs. Nevertheless, the disease's impact on the music industry cannot be denied. This is particularly true for those who came of age during the Seventies and the pre-AIDS Eighties. During this time, recreational drug use reached a summit of commonality in America, and musical movements from disco to AOR to punk were in the forefront of that cultural shift. Addiction and overdose were established threats, but no one knew that sharing needles to shoot drugs might lead to a potentially deadly disease that would be with you long after your "drug phase" ended.
"To let you go on to become something, have a family, get everything you ever wanted, and then have it taken away," Crooks laments. "That's just cruel."
Within the music industry, Naomi Judd and David Crosby have battled hepatitis C in a very public way, and both have helped raise the disease's profile at the national level. Closer to home, Crooks, Alejandro Escovedo, and Tary Owens are just a few of the prominent Austin music figures who have hepatitis C. There are other familiar names in town who have the disease - those of musicians - but a lot of them would understandably rather keep their diagnosis private.
Often called a "silent" epidemic, hepatitis C is a viral illness that primarily attacks the liver. People with hepatitis A or hepatitis B usually have fatigue, stomach problems, jaundice, and other noticeable symptoms, but hepatitis C can cause extensive liver damage without causing any symptoms.
"It's kind of tough to diagnose unless you're specifically looking for it," says Dr. Ron Byrd, a local family practitioner who also plays guitar in Prescott Curlywolf.
Unlike hepatitis A and B, there is no vaccine for hepatitis C. Furthermore, hepatitis C is more likely than other forms of hepatitis to develop into a lifelong (chronic) condition. Approximately 80-85% of people who get hepatitis C will become chronic carriers of the disease. Of those, at least 20% will develop cirrhosis within 20 years. Cirrhosis is extensive and irreversible scarring of the liver that impairs the organ's ability to filter out toxins from the body. Cirrhosis can ultimately lead to liver failure, cancer, and death.
Chronic hepatitis C is particularly insidious, not only because of its long dormancy period (sometimes as long as 20 years), but also because it's difficult for doctors to predict the disease's course. Some people will have a normal life with no significant liver damage, while others will develop cirrhosis. Each year, about 10,000 Americans die from liver damage caused by hepatitis C. It is the number one cause for liver transplants in the U.S., and many people die before a new liver can be found.
It's important to emphasize that not everyone who has hepatitis C contracted it through sharing needles. Up to a third of the people diagnosed with hepatitis C don't know when, how, or from whom they got it. We do know the hepatitis C virus (HCV) is spread primarily through infected blood. HCV is much easier to spread through blood than HIV because there's so much of it in the blood; one drop of HIV-infected blood may only contain one to five virus particles, while a drop of HCV-infected blood could have as many as 100,000 particles.
Before 1992, when widespread screening for the virus was adopted, many people became infected through transfusions. Some health care and public safety workers have been infected with HCV through needle sticks and other blood exposures, which is how Judd believes she was exposed. Sharing the razor blade or toothbrush of a person with HCV can spread the infection, and body piercing or tattooing with non-sterile equipment may also pose a risk.
About 20% of HCV infections are passed through sex, but sexual transmission of HCV is thought to be much less common than HIV or other sexually transmitted diseases. Rough sex, anal sex, or sex during menstruation may increase the risk of HCV infection due to the possibility of blood contact. Having multiple sex partners and not using condoms can increase the risk, but among monogamous couples, the lifelong risk of transmission is only about 5%. Pregnant women can also give HCV to their babies during childbirth.
There is evidence that the virus may be spread by sharing the same straw to snort cocaine or other drugs, but this has not been proven. Researchers hypothesize that tiny droplets of infected blood collect on the edge of the straw and pass into the body via nasal lining irritated by the drug.
The most common way hepatitis C is spread is by sharing injecting equipment (needles, syringes, cookers, cotton balls) to shoot drugs. This is how Crooks believes he was infected.
"We figured out that I got it in 1973," he says. "That's when I was young and stupid. I used needles for six months, maybe a year. I don't think it was that long. But I did it. Then, about two and a half months ago, I get told that I probably had around eight years to live. That's a shock."
"When Danny told me, he told me at work," recalls Crooks' wife, Leslie. "So I had that buffer zone, but by the time I got home that afternoon, I cried. I couldn't even pick up the phone.
"My first thought was, `I don't want to lose him.' We just started rediscovering each other. Our son's graduating from high school next year and we're going to have more time together. It just didn't seem fair.
"The next day, I told Danny that I was going to put the sadness and anger aside. There will be plenty of time to deal with that later. I'm just going to deal in positive thoughts. There were things that we had to do."
Crooks himself initially took a more pragmatic view of the diagnosis.
"When I found out I had this, I thought, `Well, fuck, man. I've had such a great life,'" he recalls. "Even if I've only got eight more years to go, I'll still be 53, 54, 55, and I'll probably see a grandkid or two, so I can't bitch. I've seen too many people suffer and too many people who've had a hard life. Mine's been wonderful."
But the diagnosis itself wasn't the only thing that concerned Crooks. His family members also had to get tested for hepatitis C to rule out any possibility of transmission to them. Fortunately, the tests came back negative.
"Here's my 17-year-old kid wondering if he's only got 10 years to live," says Crooks. "You had to cry. I cried like a baby. Here's something I did when I was stupid, when I was a kid, that I might have done to kill my kid. God, that's any parent's nightmare."
In October 1996, Alejandro Escovedo and his band were in the midst of a seven-month tour for the critically acclaimed With These Hands. While in Telluride, Colorado for a gig with Asleep at the Wheel, Escovedo starting getting sick. He thought it was just altitude sickness, but he started feeling even worse the next night in Boulder.
"The drinks were not sitting well with me," he remembers.
From Boulder, the band embarked on a marathon drive to Alberta for a ski resort gig in Banff. Escovedo took a Xanax and slept through the trip.
"When I finally got up, I felt horrible," he says. "We were in this beautiful setting in Banff, and I was sicker than I'd ever been in my life. I had extreme flu symptoms. I was dehydrated, I had diarrhea, I couldn't keep anything down, and I had a horrible fever. I was so weak I could barely raise my head. The band thought I was dying and I thought I was dying. I didn't know what it was."
Escovedo's illness came and went for the rest of the tour. By the time he got back to Austin, friends began to notice Escovedo didn't look well.
"It was the kind of thing where you could hear people in the next room asking my wife if I'm okay," he recalls.
After seeing three doctors and an herbalist, Escovedo was diagnosed with hepatitis C. Immediately, he began to learn all he could about the disease. The more he read, the more frightened and depressed he became.
"There's something about the disease that's almost seductive," says Escovedo. "There were times when I felt like I couldn't fight it and I was just kind of giving into it. I wasn't in good shape."
Tary Owens is another local music figure who is dealing with hepatitis C. He got his start in Austin music playing with Janis Joplin at Threadgill's in 1962. Owens is well-known for his work as a folklorist and producer of albums by Grey Ghost and Long John Hunter. Among other things, Owens is currently working on a Grey Ghost biography. He's also involved in negotiations to release all the archival recordings of prison work songs, blues, fiddle tunes, and other regional music he's captured over the past 35 years.
In public health circles, Owens may be better known for his work as a counselor for people with HIV infection and substance abuse problems at the Austin-Travis County Mental Health Mental Retardation Center. Owens served as outreach supervisor for the center's Community AIDS and Resource Education Program (CARE) from its inception in 1988 until 1996. He also helped to start the first needle exchange program in Austin.
"All through this period of time, I had no idea I had hepatitis C," says Owens. "I knew I had diabetes and I was getting depression associated with that. I was fatigued all the time. I had chronic fatigue, but I didn't know what the source of it was."
Around Christmas 1995, Owens had a near-fatal reaction to a combination of medications he was taking.
"It was then that I was diagnosed with hepatitis C," he says. "In 1995, not too many people knew very much about it. It was no longer called non-A, non-B hepatitis, but there was no treatment protocol. There was not a whole lot to be done about it and not a whole lot to be known about it."
Once a diagnosis of hepatitis C is made, the next step is determining what the disease is doing. Byrd explains:
"Typically, in order to diagnose whether or not you have an active condition going on, you have blood levels that are drawn to measure viral loads just like we do with HIV," says Byrd. "Then, I think the standard of care would be to get a liver biopsy done by a gastroenterologist. They can actually assess how much hepatocellular damage is going on.
"Unfortunately, there are some doctors who just work empirically and say, `Oh, you're positive for hep C antibody. I'm just going to treat you with interferon.' I think that's incorrect."
Even the biopsy itself involves some degree of risk, as Owens found out.
"They severed my bile duct in the process of doing a biopsy, and I again almost died," he says. "After that, as far as working in the day-to-day world, I was finished. It took months to get over the bile poisoning."
The gold standard for Western medical treatment of hepatitis C has been interferon. In about 50% of patients treated with interferon, liver enzymes return to normal. In as many as half of those patients, HCV falls to undetectable levels in their blood. Unfortunately, the vast majority of patients relapse after the drug is stopped.
And then there are the side effects, which some people equate to having a bad case of the flu for six months.
"I took a series of interferon back in '96 for six months," says Owens. "You take it three times a week by injecting it into your thigh. It has a lot of side effects. It's not quite as rough as chemotherapy, but some people lose hair. I had muscle contractions that I still have a year later."
The good news is doctors are seeing a higher, prolonged success rate by combining interferon and ribavirin. About 45% of patients show sustained viral suppression after using a combination of both drugs. Owens hopes the new treatment will work for him.
"After I took the interferon and my enzyme levels came down, I had a really good year," he says. "Now it's catching up with me and I'm running out of steam."
Three weeks ago, Crooks had a liver biopsy. After operating under the assumption that he only had eight years to live, the results of his biopsy were quite encouraging.
"I was expecting my liver to be 30-40% gone and cirrhosis already setting in," he says. "That's what was happening to most of the people I'd talked to when they found out. Turns out I have a little scarring, but no cirrhosis. My liver's fine. I quit drinking seven years ago, and that's probably what's going to end up saving my life."
Dr. Scott Becker, a gastroenterologist who plays guitar with the Scott Becker Band, confirms that getting tested and starting treatment early in the course of the disease is critical.
"The younger you are, the better your chance of response," says Becker. "The less scarring you have, the better your chance of response. If you have cirrhosis, you probably won't respond."
Crooks says his doctor thinks he stands a pretty good chance of responding to interferon and ribavirin. Three weeks ago, he started a six-month regimen of the two drugs. Since then, Crooks reports having rashes, body aches, and mood swings that make him feel unable to control his emotions. Within 10 days, he'd lost 17 pounds.
"I can't eat," Crooks says. "Every time I do eat, I puke."
Though he acknowledges the nasty side effects will keep him away from Steamboat for a while, Crooks says he doesn't care as long as the treatment works.
"I've got my crew at work and everybody's been so cool," he relates. "They're already doing my job for me. When they found out I had this disease, everybody started doing more right off the bat. I haven't worked in a month and I don't plan on working for six more months. I'm going to stay home and try to beat this thing."
Escovedo took almost an entire year off after his diagnosis.
"Everything I read at that time kind of led to one conclusion: You don't have long to live," he recalls. "Some people survive, but I read that once it manifests itself and shows up, your liver's in pretty bad shape."
In addition to the disease itself, Escovedo was a musician with no health insurance. The mounting medical bills only served to worsen his fear and depression. Then one day, Escovedo's good friend, producer, and fellow musician Stephen Bruton showed up.
"He came over and said, `Listen, I'll give you the money. I just want you to get up off this couch and stop being such a drag,'" recalls Escovedo. "At first, I was really pissed off at him and kind of hurt. But eventually, I realized he was right.
"Finally, my doctor said, `I'm going to tell you what I tell my AIDS patients. Go out and live your life. Enjoy it and make the best of it. You never know how long you're going to be around anyway, so there's no reason to sit around and mope about this.'"
With that, Escovedo set out to face the disease on terms he could live with.
"I've modified my lifestyle to not lose touch with what I love in life, which is playing music and writing songs," he says. "You know something? I feel healthier than I've felt in quite a while."
Although the relative success of interferon/ribavirin therapy is welcome news for some, Escovedo chose to take a more unconventional and holistic approach to hepatitis C. He modified his diet by cutting down on sugars and fats while adding green vegetables. He also started taking vitamins, co-enzymes, liquid liver extract, and milk thistle, an herb which is said to promote overall liver health.
One thing Escovedo didn't do - contrary to all medical advice, both Western and otherwise - is abstain completely from alcohol.
"Every now and then, I have a glass of wine," he says. "It's weird, but it makes me feel better. And I think it makes me feel more like I used to feel. I don't feel like I'm a diseased person who's about to die anymore. Maybe that's all just psychological, I don't know. But it really does make me feel better."
Although Crooks gave up drinking seven years ago, he does smoke marijuana.
"I quit doing things that hurt my liver, and I quit doing drugs 20 years ago, but I smoke pot," he says. "I'll always smoke pot, and now I'm told it's the one thing that'll help me get through this medicine."
Owens supplements his Western medical therapy with herbs, acupuncture, massage, yoga, and physical therapy. He also eats a healthy diet and exercises on a regular basis.
"I put a lot of energy into taking care of myself," Owens relates. "It's essential."
Twila Dawn Willis, owner of The Herb Bar, sees a lot of people with hepatitis C in her store.
"A lot of times, people come here because they can't afford the other choice, or they choose not to because it's not for them," she says. "I want to empower people so they take charge of what they're doing. Something happened that was out of their control. Now they can take control, and that's a really big part of the healing process."
Because most of the alternative therapies have not been subjected to research and testing within the rubric of Western medicine, Becker urges caution.
"They're making claims that are not tremendously justified," he asserts. "But I tell people as long as something's not harmful, I'm not going to steer them away from it."
Crooks, Escovedo, and Owens all say friends and family are crucial support mechanisms in coping with hepatitis C. Crooks and Owens also stay in contact with others who have the disease.
"Among musicians, we informally provide each other support," says Owens. "I get a lot of calls from people who just found out they have it or who are seeking guidance on where to get help or how to deal with it."
Some Austin musicians with hepatitis C have turned to the SIMS Foundation for support. Director Peyton Wimmer has already seen three cases come through this year, and he expects to see more. Often, one of the first needs is to assist musicians who don't have health insurance with medical expenses.
"Sometimes we can get a scholarship from the interferon people, and that helps," says Wimmer. "Sweet Relief is our biggest resource. They're a great, great program, and they've helped a lot of hep C musicians."
Sweet Relief, a Los Angeles-based charity that helps qualifying musicians pay for medical treatment - and is perhaps best known for its Victoria Williams and Vic Chesnutt tributes - has seen an increase in the number of musicians requesting help for hepatitis C.
"All of our clients who are IV drug users have it," says Sweet Relief's managing director JoAnne Klabin. "I do have at least one other client who has it from a blood transfusion, though, so it's not entirely IV drug users."
To that end, Klabin is considering a program for musicians with hepatitis C, as well as an education campaign to teach musicians how to avoid it. Meanwhile, the influx of hepatitis C cases has spurred Wimmer to write about nutrition for the SIMS Web site (http://www.sims-foundation.org). Wimmer also encourages musicians with hepatitis C to consider their mental health when thinking about treatment.
"One of the biggest factors in dealing with hep C is your mental attitude toward your health, and also the fact that one of the best ways of dealing with it involves a large lifestyle change," says Wimmer. "This is not easy. To make a change of that nature, you have to take it really seriously and give it the attention it deserves. Counseling can help that. It helps in dealing with any sort of chronic illness, because this doesn't go away tomorrow. It's with you even when you're feeling good."
An effective response to hepatitis C - in music and elsewhere - would have to walk a fine line between well-crafted outreach and wrongheaded stigmatization. To put it another way, we have to respond to the behaviors that put people at risk for hepatitis C without allowing the Powers That Be to demonize and marginalize those affected by the disease.
"What scares the hell out of me is that people are going to say it's drug addicts and criminals and they're not going to deal with it," says Owens. "Just like they did with gay people and AIDS."
Nevertheless, hepatitis C is one more reason why we can't afford to ignore the impact of drug use within the music community.
"HIV really hit the arts community hard, especially the dramatic arts," says Owens. "Hepatitis C is now hitting the music community, and I think a lot of what's behind that is the romantic crap about drugs that goes back to Billie Holiday, Charlie Parker, Hank Williams, and later, Ray Charles. So many young musicians felt if they wanted to express themselves musically, they had to follow in the footsteps of the people they idolized."
Our inability as a society to respond to illicit drug use on anything other than a moral level is another barrier to effective hepatitis C outreach.
"A lot of us used needles and are just too embarrassed to let anybody know about it," says Crooks. "Drugs are one thing. Everybody can understand that you snorted something or took a pill or smoked a joint, but when you think about sticking a needle in your arm, that's the bad stuff, man. And that's when you're evil or dirty. That's not what normal people do."
Encouraging people with risk factors to get tested for hepatitis C presents its own challenges. With studies showing the infection rate among today's injecting drug users running anywhere from 50-90%, helping users who can't or won't quit stay uninfected may be an even bigger challenge.
"The same lessons we learned with HIV and harm reduction are what's going to work for hepatitis C," says Owens. "You do whatever it takes to prevent people from passing the virus to others."
One way to prevent infection is by making sure drug users have clean needles. The Clinton Administration acknowledged as much this spring, but refused to fund needle exchange programs because of pressure from drug warriors like General Barry McCaffery. McCaffery, the nation's drug czar, believes allowing needle exchange would send the Wrong Message.
"Why should a generation let another generation kill itself off when you have the education to stop it from happening?" asks Crooks. "We know we've got to give these people clean needles. Sure, they might still end up O.D.ing, but a lot of them could be like me and realize that's not what their life is supposed to be."
Perhaps the most endearing characteristic shared by Crooks, Escovedo, and Owens is their acknowledging how grateful they are for what they have in spite of hepatitis C. All three expressed pride and joy for their loved ones and creative passions. As the adage goes, a positive attitude can go a long way.
"It's a day-to-day thing and we're just taking it one day at a time," says Leslie Crooks. "I say `we' because even though Danny's the one taking the medication, we're going through it together. We still have that long six months - "
"No, man," interrupts Danny. "That six months is going to go just like that. If that's all we're going to have to go through, it ain't gonna be nothin'. It's going to be a drag to be sick for six months, but by South by Southwest, I'm going to be healthy again."
For information on local support groups, treatment options, and doctors who specialize in hepatitis C, contact the Central Texas HepC Connection at 432-1787 or see Internet site http://www.hepc.org.