Hepatitis C is sweeping through the generation that came of age in the '60s and '70s. But many baby boomers don't even know they have it.
Becky Lorenz was feeling pretty good about her life. At 37, she was the mother of two school-age children. She was engaged to a man she couldn’t wait to marry. And she loved her work as a staff welder at the University of Maryland Department of Physics, a job that had involved overcoming sexist barriers.
But as late summer 1991 rolled around and her kids were getting ready for a new year at Cannon Road Elementary School in Silver Spring, “something didn’t feel right,” she says. Lorenz was often nauseous and tired. She began sleeping a lot.
Blood tests done as part of her annual physical later that year detected high liver enzymes, a sign of possible liver inflammation or even damage. Lorenz learned she had hepatitis C, an infectious liver disease caused by the hepatitis C virus (HCV). Left untreated, the virus can cause cirrhosis, or scarring of the liver, and in some cases liver cancer.
“I barely remember leaving the clinic that day,” Lorenz says. “I just went home, crawled into bed and cried and cried and cried some more. …Oh, my God, I thought, am I going to die?”
Visits to various specialists didn’t help. HCV was only identified in 1989, and doctors didn’t understand it well. “One doctor said something that stunned me,” Lorenz recalls. “ ‘You only have two years to live, so you’d better get your things in order.’ How do you tell your family something like that?”
For several months, Lorenz struggled with depression on top of her exhaustion. Then she summoned the same determination that had enabled her to break through barriers in the welding profession and began to educate herself about the virus. Since it was before the days of easy Internet research, she scoured libraries and tapped resources at the American Liver Foundation and the Centers for Disease Control and Prevention (CDC). She learned that although hepatitis C can aggressively attack the liver, many people live with the virus for decades without any problem. So “there was a flicker of hope,” she says.
In 1998, Lorenz participated in a clinical trial at the National Institutes of Health in Bethesda. That treatment failed, but a second drug trial in 2001 proved successful. It combined pegylated interferon, a drug that helps the body fight infection, with the anti-viral ribavirin. Since then, both drugs have become part of standard HCV treatment.
And at 59, Lorenz has been virus-free for more than a decade.
In recent years, a number of celebrities—including singers Steven Tyler, Natalie Cole and Naomi Judd—have gone public with their HCV experiences, hoping to boost awareness. Yet most people remain largely ignorant of the virus, which is spread through infected blood.
Baby boomers like Lorenz—those born from 1945 through 1965—are five times more likely to be infected with HCV than other adults, according to the CDC. They account for about 2 million of the roughly 3.2 million cases in the United States. Most have no idea they even carry the virus. But as they age, experts say, the chance of them developing life-threatening liver conditions rises dramatically.
As Lorenz discovered, there are effective treatments, with the cure rate now approaching 75 percent. Nonetheless, more than 15,000 Americans, most of them baby boomers, die from HCV-related liver illnesses each year. That number, which has been rising for more than a decade, is projected to grow significantly as this generation enters old age. Last year, the CDC recommended that all baby boomers be tested for the virus.
“A one-time blood test for hepatitis C should be on every baby boomer’s medical checklist,” CDC Director Dr. Thomas Frieden said at the time. “The new recommendations can protect the health of an entire generation of Americans and save thousands of lives.”
Though it’s not fully understood why baby boomers are disproportionately affected by HCV, epidemiologists suggest potential reasons. Among them: recreational drug use with shared needles during the ’60s and ’70s, when many in that generation were coming of age.
That’s how a Bethesda father of two believes he got HCV. While traveling overseas at age 20, he met a drug addict who offered to inject him. He can’t explain why he agreed and isn’t even sure what was in the syringe. “That was a single incident in my life,” says the 62-year-old, who asked not to be identified. “I screwed up.” He was diagnosed in 2001, when blood work done for another health matter showed that his liver enzymes were elevated. He still has the virus today.
Gene Weingarten, a Pulitzer Prize-winning journalist and humorist at The Washington Post, believes he contracted HCV from intravenous drug use during his college years. “It’s odd, because to my memory I never shared needles, but I also never had a transfusion,” says the 61-year-old former Bethesda resident, who writes about the illness in The Hypochondriac’s Guide to Life. And Death. (Simon & Schuster, 1998). “Must have slipped up somewhere,” he adds.
Weingarten, who now lives in the District, took interferon for nine years. After ribavirin became available, he added it to the mix and found himself virus-free in 2000.
Cocaine users who shared straws or other devices to snort drugs also put themselves at risk. Infected blood from cuts inside the nose can be transferred to other users.
Beyond drug use, there are other ways the virus spreads. The nation’s blood supply wasn’t reliably screened for HCV until 1992. So anyone who had a blood transfusion or organ transplant before then could have been infected.
A 74-year-old grandmother from Rockville says she contracted the virus in 1986 from a blood transfusion during surgery for colon cancer. North Bethesda psychiatrist Dr. Norman Rosenthal, 63, says he too was infected by a blood transfusion as a young man in South Africa, where he was born and raised. He notes his experience in The Gift of Adversity (Penguin Group, 2013). Like Weingarten, he was cured of the virus in 2000.
Tainted blood products also have spread the virus. Silver Spring’s Tim Halloran, 66, traces his infection to gamma globulin shots he received while serving in the U.S. Navy in the late 1960s. Gamma globulin, which is derived from blood, was given to help soldiers fight infection and disease.
Though intravenous drug use and blood transfusions account for the majority of HCV cases, anyone exposed to infected blood is susceptible. Unsterilized instruments used for piercings, tattoos, manicures and even dental work can spread the virus, says Dr. Theo Heller, chief of the translational hepatology unit within the National Institute of Diabetes and Digestive and Kidney Diseases at NIH. Safety regulations require strict sterilization procedures, but cases still occur. And at home, even sharing razors or toothbrushes carries a small risk of transmission, Heller says. (HCV is not spread by saliva, and only rarely through sexual contact.)
Because there are so many ways to contract HCV, many patients aren’t sure how they got it. Lorenz believes she contracted it either from a blood transfusion during a caesarean section when her son was born in 1985, or from a tattoo she got as a young woman.
“You don’t really know for sure,” she says.
Hepatitis C can manifest in one of two forms. The acute or short-term version of the infection usually becomes apparent within six months of exposure, with symptoms including dark urine, fatigue, jaundice, loss of appetite, abdominal pain and nausea or vomiting. In 2009, about 16,000 people in the U.S. were reported to be suffering from acute hepatitis C, according to the CDC. In nearly 85 percent of those cases, the disease became chronic. The other 15 percent recovered without treatment.
People with the chronic form of the illness often experience fatigue, as Lorenz did, but usually have no other symptoms. They may only learn they carry the virus when they donate blood or have blood work done for other health concerns. Sometimes people live with the virus for decades. By the time symptoms appear, the disease is so advanced that they require a liver transplant.
Heller recalls one Fortune 500 executive who needed a transplant just months after his diagnosis. The virus likely had been damaging his liver for decades, Heller says.