Hepatitis C patient Nancy Turner shows Kathleen Coleman, a nurse practitioner, where a forearm rash, a side effect of her treatment, has healed. Turner is one of many patients with hepatitis C experimenting with new drugs to beat back the virus.
Hepatitis C patient Nancy Turner shows Kathleen Coleman, a nurse practitioner, where a forearm rash, a side effect of her treatment, has healed. Turner is one of many patients with hepatitis C experimenting with new drugs to beat back the virus. Richard Knox/NPR
A smoldering epidemic already affects an estimated 4 million Americans, most of whom don't know it.
It's hepatitis C, an insidious virus that can hide in the body for two or three decades without causing symptoms — and then wreak havoc with the liver, scarring it so extensively that it can fail. Half of all people waiting for liver transplants have hepatitis C.
The virus is also driving a recent twentyfold increase in liver cancer. "Liver cancer is the fastest-growing cause of cancer mortality ... at a time when most cancer mortality is declining," says Dr. John Ward of the U.S. Centers for Disease Control and Prevention.
A recommendation last fall from the CDC underscores the magnitude of the problem. The agency says everybody born between 1945 and 1965 — around 79 million baby boomers — should be tested for hepatitis C.
Two out of three Americans living with hepatitis C infection are baby boomers.
They're people like 58-year-old Nancy Turner. She's a mental health nurse in Massachusetts who never suspected hepatitis C when she went to her doctor with nagging, unspecific symptoms more than three years ago.
"I was feeling a little bit more tired," she recalls. "Just kind of an upset tummy-type thing. Just chalked it up to stress from work and being busy."
But tests revealed sky-high levels of hepatitis C in her blood.
Turner was devastated, she says. Her first thought was "where I possibly could have gotten it."
Many baby boomers got hepatitis C by experimenting with illicit drugs — either by injecting or by snorting. Either way, the virus can get directly into the bloodstream — the only way hepatitis C is transmitted. You can't catch it by coughing, kissing or sharing a coffee cup.
Some baby boomers got the virus from having a blood transfusion before 1992, when all donor blood began to be tested for hepatitis C.
Hepatitis researcher David Thomas of Johns Hopkins Center for Global Health says today infections are often discovered when somebody gives blood.
"You go back and talk to them, and more than half of them will say, 'Well, yeah, of course when I was in high school I messed around a little bit, but I'm not a drug user,' " Thomas tells Shots. "That's the kind of thing that really drove hepatitis C and expanded [it] in our population back in the '60s and '70s."
Turner says she smoked a little marijuana back then but never experimented with other drugs.
But she is a nurse, and health care workers are at higher risk of catching hepatitis C because they can be exposed to infected blood. An accidental needle stick or any break in the skin can do it.
Turner doesn't recall any such incident. Like perhaps a third of hepatitis C patients, she may never know the source of her infection.
Turner went on what was standard treatment at the time she was diagnosed — two potent drugs called pegylated interferon and ribavirin. Soon her life was disrupted by the side effects — severe fatigue, depression and other problems.
"It was a long, tough road," she says. But she was determined to beat the virus. And at first the treatment seemed to work.
"I did a year [of] treatment," she says, "and at that time there was no more hep-C virus that was evident. When I went back [after stopping the drugs] for my three-month blood work, it had come back full force. Most discouraging day of my life."
But in 2011, two new drugs got approved for hepatitis C — telaprevir (brand name Incivek) and boceprevir (Victrelis). Turner tried one of those, along with the older drugs.
The new regimen was even tougher. She suffered severe rashes and other side effects, including a total loss of appetite. She lost 60 pounds.
Nurse practitioner Kathleen Coleman of Tufts Medical Center in Boston helped her get through it. "We can get them through therapy," she says. "We do manage the nausea, we do manage the anemia, we do manage the rash."
And once again, the treatment seemed to work. Tests indicated the drugs rapidly cleared the virus from Turner's blood, as it is for most patients these days.
"We're going from 35 to 40 percent clearance rates to 70, 80, 90 percent clearance rates," Coleman says. "That is a tremendous change."
Three months after Turner completed this round of treatment, she went back for a checkup. "I actually have been wonderful since the treatment stopped," Turner tells Coleman. "Food tastes wonderful again. I think that's my favorite part of this whole thing."
But the real test is whether the virus doesn't show up in her blood months after treatment stops. So Turner says she's "walking a little bit on eggshells, waiting for that last blood test."
Recently, Turner got the results. The virus has roared back, unfortunately. So she's among the 20 percent or so who aren't cured by the latest drugs.
But that's not the end of the story. There are a couple of dozen new drugs in the pipeline. Turner might yet be cured by one of those — and maybe with a lot fewer side effects.