CHAMPAIGN — Hepatitis C sneaked into Sally Allen's body some time decades ago.
And like millions of people in the U.S. infected with the same bloodborne viral infection, she lived with it a long time before she found out it was there.
Allen, 65, of Champaign, was diagnosed with hepatitis C in the early 1990s, but her doctors told her she was likely infected in the late 1970s, a few years after she started working as a nurse.
Because Allen's infection went undetected for more than a decade, hepatitis C had plenty of time to take its signature toll on her liver.
"I have total cirrhosis of the liver because of it," Allen says. "My life is ticking along, but I get tired very easily. By 4 o'clock, I'm just done."
If you fall into a higher risk group for hepatitis C — which includes all baby boomers, who are five times more likely to have it than others — Allen's experience is a wake-up call about an infection scourge at least three times the size of HIV in the U.S.
The Centers for Disease Control and Prevention estimates the number of Americans living with chronic hepatitis C at 3.2 million, most of them boomers who don't know it, but Dr. Andrew Batey, a Carle gastroenterologist treating patients with this illness, says a realistic current range is 3 million to 5 million people.
"You can see we are dealing with a significant medical issue, here," he says.
People get hepatitis C, or HCV for short, through contact with the blood of an infected person.
That can happen through the use of needles and other equipment-sharing in illegal drug use, or through needlestick injuries in health care settings, and more rarely through sexual contact — but the sexual transmission chances of hepatitis C increase if at least one of the partners has a sexually transmitted disease.
Some longer-running infections are the result of transfusions and organ transplants that occurred before 1992, when a widespread screening of blood began in the U.S.
Allen says she'll never know how she ended up with hepatitis C, but she looks back to her early nursing years and has her suspicions. Health care providers didn't take the same safety precautions then that they do now, she adds.
For example, she recalls, there was a time she'd only get a clean pair of gloves out of the utility closet to change a patient's wound dressing, because patients got billed for each pair of gloves a nurse used. And needles used in patient care used to be placed on carts rather than being quickly being disposed of safely in containers where they wouldn't pose a hazard, she says.
"I did get needle sticks, I recall, and I'd go to the ER and get the proper procedure — but they didn't test for (hepatitis C) so it's undetermined how I got it," Allen says.
Batey says hepatitis C is the most common chronic viral illness in the U.S., going unrecognized by many largely because it can live in the body for decades without symptoms.
Hepatitis C can be an acute, short-term illness, or chronic, but for 80 percent of those infected it's a lasting infection and can lead to less liver function or failure. It's also the leading cause of liver cancer and the major reason for liver transplants.
Batey says a CDC recommendation that all baby boomers (born between 1945 and 1965) be screened for hepatitis C stands regardless of other risk factors, and he urges everyone in that age group to be screened, even those who believe they couldn't possibly be infection candidates.
If you're among the scoffers, consider that 10 percent of patients diagnosed with hepatitis C wouldn't recognize the risk factors they have, he says. For baby boomers, that may be because memories of every action that may have upped the risk tend to fade over time.
Over a number of years, 20 percent to 25 percent of infected patients progress to liver cirrhosis in 15-20 years, Batey says, and "most patients are asymptomatic. They don't have any symptoms until they have end-stage liver disease."
Younger people aren't immune from risk, Batey says, but they do tend to be more aware of risks than baby boomers were. Young people today who are injection drug users, for example, are more likely to use clean needles.
But, he adds, anybody with a history of injection drug use, intranasal cocaine use and blood transfusions or solid organ transplants before June 1992 should be screened for hepatitis C. Other increased risk factors include tattooing and body piercing that may not have been done with sterile instruments, a history of HIV, being a hemodialysis patient and being born to a mother with hepatitis C, he says.
Screening for hepatitis C is a blood test that shows whether someone has ever been infected, but to confirm current infection requires a second test.
Anyone testing positive the second time should seek immediate treatment, Batey says, because hepatitis C is curable, and the earlier the treatment, the better the chances of avoiding damage to the liver.
"Even if significant damage is done, (treatment) will decrease the risk of further damage leading to the risk of liver transplant," he adds.
Two new drugs are significantly raising cure chances — though these drugs are expensive and not for everyone, Batey says.
Older treatments cured about half of infected people, and a new one available since 2011 raised the cure rate to 60 percent to 70 percent, Batey says. But older treatments have come with side effects and a big pill-taking burden.
The waiting game
This past spring, Allen was one of about 20 patients at Carle to be treated with the two hepatitis C drugs — Sovaldi (sofosbuvir) and Olysio (simeprevir) — approved by the Food and Drug Administration late last year.
Each is intended to be part of a combination drug treatment program, and each works by blocking a certain protein the hepatitis C virus needs to replicate.
Batey says these two drugs given together, without other medications, are achieving a 95 percent cure rate without negative side effects. It will be months before he has conclusive findings for most Carle patients taking this two-drug combo, but early results look promising, he says.
These two drugs are for people with genotype 1 HCV, the kind of hepatitis C that 70 percent of infected Americans have, but the cost of both of them is a staggering $150,000 for the three-month treatment — $84,000 for the Sovaldi and $66,000 for the Olysio, and that doesn't include other costs, such as lab work, Batey says.
Using this treatment will require good decision-making by doctors with their patients on who can benefit most from it, he says.
Still, he says, even at $150,000, the drugs are about a half the cost of a liver transplant.
Allen says her insurance picked up all but $18 a month of the drug cost, "thank God," and she'll find out in October if it worked.
Potential benefits for her: The treatment could stabilize her liver disease and decrease her need for a liver transplant some day, and even if she winds up needing a transplant, she could be free of infection so the virus wouldn't affect her new liver, Batey says.
After living with hepatitis C for so long, how is Allen looking at a possible life without the illness?
She'll see first if the new treatment works but the idea that she could be cured has left her with strange feelings of anxiety because she's had the infection so long, "I felt like it was me."
"I have failed so many treatments, so I'm hopeful about this one," Allen says. "But I wouldn't bet my life on it."
Hepatitis C by the numbers
The number of vaccines to protect against it, though there are vaccines for hepatitis A and hepatitis B.
4 out of 100
Women with hepatitis C who pass the infection along to their newborn infants. But the risk for baby grows if mom also has HIV infection.
15 percent to 25 percent
Infected people who clear the infection from their bodies without treatment. Medical experts don't fully understand why this happens.
60-70 out of 100
Infected people who develop chronic liver disease.
1-5 out of 100
Infected people who die of cirrhosis or liver cancer.