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Ray Benson, Alejandro Escovedo share their battle with hepatitis C
Disease affects 1.8 percent of Americans; SXSW will have panel on the issue for musicians
Matt Rourke/AMERICAN-STATESMAN
After a year of being depressed, Ray Benson, who has hepatitis C, decided to turn a negative into a positive by speaking out about it. |
AMERICAN-STATESMAN STAFF
Tuesday, March 01, 2005
Ray Benson's past caught up with him in 1999.
Benson, the towering leader of Asleep at the Wheel with the booming baritone, says he isn't sure whether he caught the deadly hepatitis C virus from a tattoo or a shared cocaine straw.
Whatever the cause, it probably happened decades ago. That's why hepatitis C is called the silent killer; it often lives in the body for years without any sign.
So far, Benson has avoided the brunt of the liver-zapping virus. But another beloved Austin-area musician, Alejandro Escovedo, almost died from it.
The pair highlight a group — musicians who lead hard-driving lifestyles — at high risk of getting the virus. Many lack health insurance.
The number of infected musicians is impossible to determine accurately. But reports of hepatitis C within the music community have become so widespread that it will be spotlighted next month at the South by Southwest music conference. Benson, who recently began speaking out about the virus, will sit on a SXSW panel March 19.
Many other people also are at risk, even though they may feel safely ensconced in their lives. Hepatitis C is the most common blood-borne infection in the country, affecting 3.9 million, or 1.8 percent, of Americans. More than half do not know they have it.
It is spread when the blood or body fluids of an infected person mix with another person's blood or fluids. Some people get rid of the virus on their own, but the sickest need a liver transplant and could die waiting for a scarce organ.
Benson knew he had some risk factors and asked to be tested. The doctor laid out a grim scenario.
"It was devastating," said the 6-foot-7-inch Benson, framed by guitars, photos and CDs in his South Austin office. "Five or six people I knew very well were in really bad shape, and I figured that was the way I was going."
He changed in ways big and small. He eats a healthier diet, exercises and almost never drinks.
After he found out he was infected, Escovedo continued drinking occasionally, which kept hurting his liver, and then fought his way back from the brink. Worst of all, after fathering his seventh child in 2003, "I was seeing my family slip away," he said. "That was what was destroying me."
Tattoos and cocaine
Although Escovedo's battle with the virus has been mentioned in almost 200 U.S. newspaper articles since he was diagnosed in 1996, many people are surprised to hear that Benson, 53, also has it.
Benson said he was tattooed in 1977, two days after a couple of friends with hepatitis C went to the same Austin parlor. He suspects that infected blood was left in the ink. Or maybe he caught it by sharing a cocaine straw — an activity Benson says he quit in 1983.
Miriam Alter, associate director for science in the division of viral hepatitis at the U.S. Centers for Disease Control and Prevention, said other possible, less common ways to catch the virus include sex, long-term kidney dialysis, shared toothbrushes and razors, and blood transfusions and organ transplants before testing began in July 1992.
But the vast majority — about 80 percent — are infected by shooting drugs and sharing needles.
Despite the controversial ways that hepatitis C can be spread, Benson, whose band has won nine Grammys, said he isn't worried that speaking out will hurt his image.
"I feel I have nothing to lose and everything to gain," he said. "If you want to put a face on it, here it is, pal."
Escovedo, 54, said he also isn't sure how he contracted hepatitis C. As for risky behavior, he said, "I grew up in the '70s, and I enjoyed myself."
Now, he is trying to raise money to defray his medical expenses and those of other uninsured musicians.
Talking about hepatitis C has been a way to turn a negative into a positive, Benson said. It is not a death sentence. It took him a year of being "thoroughly depressed" before he realized that.
Alternate approach
Benson shuns Western medicine's way with hepatitis C.
Most doctors use a two-drug punch: pegylated interferon injections and antiviral ribavirin pills. Some people can't tolerate it. Benson, a longtime practitioner of Eastern medicine, never tried.
Instead, he uses a milk thistle supplement, acupuncture and herbs. He also is convinced that he remains symptom-free because of his singing, which he says exercises his abdominal cavity.
Escovedo's route, by contrast, has been torturous.
He was vomiting, dehydrated and weak in 1996 when he did the unthinkable: canceled a show in Vancouver soon after it began. Doctors thought he was exhausted. It took awhile before an Austin physician nailed hepatitis C.
Escovedo kept touring and decided that he would not fare well on the drug treatment. His body gradually broke down.
Twenty minutes before an April 2003 show in Phoenix, Escovedo started vomiting blood. He performed anyway and was rushed by ambulance to the hospital afterward. He had signs of advanced hepatitis C, including bleeding in the esophagus and cirrhosis.
He almost died of blood loss in the hospital. The doctors told him he needed a liver transplant.
Toward the end of 2003, he started the drug therapy. He kept it up for nine months, and the virus was undetectable, but the treatment was "hellish," he said.
"I wasn't producing any muscle mass," he said. "I was very weak. My immune system was very depleted. . . . It's like an army that destroys everything in its path."
By the time he quit it in August, he was close to death, he said. He is managing the illness now, he said, with acupuncture, supplements and a blood pressure medicine.
More deaths ahead
Many doctors don't want to treat hepatitis C because it's complicated, and they don't typically screen for it, said Dr. Imtiaz Alam, medical director of the Austin Hepatitis Center.
Hepatitis C can be cured, he said, but he expects the problem to worsen because so many people are unaware that they have it. "We expect a doubling or tripling of deaths due to hep C and its consequences in the next 10 to 20 years," said Dr. Gary Heseltine, epidemiologist in the infectious disease control unit at the Texas Department of State Health Services.
About 360,000 Texans have hepatitis C, Heseltine said, including an estimated 15,745 people in Travis County, according to the Austin/Travis County Health and Human Services Department. Local health officials are so concerned that they check for hepatitis C when testing for HIV.
"You have a lot of people settling into middle-class life who feel great," said Dr. Don Brode, who sees hepatitis C patients at Austin Regional Clinic and the David Powell Clinic. "They might be tired . . . but people won't often go to the doctor for vague symptoms. That's what makes it a real insidious thing. It's just hanging out doing all this damage."
Escovedo said the past two years have been an education for him.
For the first time, he has been home for two years to see his child grow up. That has brought profound joy.
"I've developed a great relationship with my children," he said. "I owe that to the disease. I owe a lot of things to it. Without it, I would have kept going on with the same routine."
Benson said he knows what's important: "music, being active and interacting with my family."
"I think I'm going to live to be a ripe old age and die," he said, "by a jealous husband shooting me."
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