By the time he was diagnosed with chronic hepatitis C, Spencer Baker had cirrhosis so advanced that he needed a liver transplant. Then he developed liver cancer, too.
"Here I'd decided to get my life on track, and the doctor called and said I had terminal liver disease because of hepatitis C," said Baker, 56, a former gallery owner who lives in midtown Sacramento and received a new liver in 2009.
Now the Centers for Disease Control and Prevention has issued a sweeping recommendation that all Americans born between 1945 and 1965 – a group that includes 76 million baby boomers – be tested for hepatitis C, the blood-borne illness previously linked not with a specific age range but instead with intravenous drug use and blood transfusions.
The recommendation is a bold effort, medical experts agree, to stem a soaring but largely silent epidemic that affects a disproportionate number of baby boomers, who account for three-fourths of the nation's 3.2 million hepatitis C infections. The virus can lurk undetected and undiagnosed for decades before it causes symptoms – but when it does, the symptoms are devastating.
Hepatitis C has already surpassed the AIDS virus in the number of resulting annual U.S. deaths, and most of those are in middle-aged people not diagnosed until it's too late for treatment. The virus is the top cause of liver transplants, according to the CDC, as well as the reason that liver cancer is on the rise – unlike most other cancers.
But with an estimated 95 percent of baby boomers not infected with the virus, the CDC's new guidelines can seem overly broad and alarming, especially to a generation raised on one health scare after another: polio, various flu epidemics, herpes and AIDS.
Why should all baby boomers be tested when all haven't participated in high-risk behavior?
"Can you be sure about that, though?" said Martha Saley, director of the National Viral Hepatitis Roundtable, a consortium of 200 hepatitis C organizations.
"It wasn't uncommon for a group of friends to get together in the '70s and do tattoos at a rock concert," Saley said. "You wouldn't know if the person sitting next to you was an IV drug user. You just thought, how fun for all of us to get the same moon and star on our toes."
Without diagnosis, she and other advocates say, people carrying the virus won't know they should stop drinking, eat healthfully and avoid certain over-the-counter herbs and medications that can harm the liver, such as black cohosh and Tylenol.
To hepatitis C experts, not having the one-time blood test – a routine screening that blood donors undergo every time they give blood – amounts to denying the reality of a growing public health problem that can lead to billions of dollars in future medical costs.
"It's a real ostrich head-in-the-sand way to approach the disease," said Saley.
'People are afraid to know'
Previous CDC guidelines for hepatitis C simply suggested testing anyone who was at high risk – anyone, in other words, who would admit to a history of transfusions or injected drugs. (In rare cases, the virus can be spread through unsanitary tattoos and piercings, sharing razors or toothbrushes, and through sexual contact.)
"Many times, when you ask the routine questions for risk, people minimize their risk," said Dr. Olivia Kasirye, Sacramento County's public health officer. "Or they forget.
"We find that people are afraid to know."
The new recommendations, medical experts said, could go far to alleviate the sense of stigma and shame that has kept hepatitis C hidden to such an extent that people aren't diagnosed until they're dying.
An estimated 530,000 Californians today carry the virus, including more than 25,000 people in Sacramento County – but about half don't know they have it, said Leslie Benson, founder of Education for Healthy Choices, a hepatitis C advocacy group.
"There are tons of people who had transfusions and were exposed to contaminated blood decades ago and don't realize it," she said.
Today 83 percent of Sacramento County's newly diagnosed hepatitis C cases occur in people in their 40s, 50s and 60s who have had the virus for decades.
With the new guidelines, the CDC expects another 800,000 Americans to test positive. Research has shown that routine blood tests for liver enzyme levels, a part of ordinary physicals, don't correlate with the presence of the virus.
Hepatitis C wasn't identified until the late 1980s, though doctors had long been aware that an unknown virus similar to hepatitis A and hepatitis B caused liver inflammation in up to 30 percent of people receiving blood transfusions before routine blood testing was instituted in 1992.
One-quarter of people infected with hepatitis C recover on their own – and many of the remaining 75 percent will never have chronic symptoms. But for those who do, symptoms can include extreme fatigue, jaundice, confusion, severe bloating, kidney disease and liver failure.
There is no vaccine, but there is treatment: Interferon and ribavirin cure about half of hepatitis C patients, and the recent addition of two new protease inhibitors boosts the cure rate past 75 percent, according to CDC data.
"Now there is therapy," said Dr. Richard DeFelice, Sutter Medical Center infectious disease specialist. "It's reasonable for people to know if they're infected."
Interferon cures some
Interferon therapy cured Saley, now 61, whose only known exposure was getting a tattoo at a party in the late 1960s.
"I think that's how I got it," she said. "But the bottom line is, it doesn't matter where you got it. It matters when you got it and how long you've had it."
Therapy also cured Benson.
She was diagnosed in 1992 after participating in a blood drive at the Sacramento TV station where she worked. Her doctors didn't seem concerned, but over the next decade, she grew more fatigued and confused.
"I couldn't function," said Benson, now 64. "I had all-over body pain. My primary care doctor said, 'You need to see a shrink.' This is after years of being patronized, and here I was on disability and unable to work."
When she was 16, she had been injured in a car accident and received five pints of blood. A few years later, she said, she used injection drugs a few times.
"It was a brief experience," she said. "Given the volume of blood in the transfusion, that was probably the source."
After selling her house and declaring medical bankruptcy, she underwent six months of interferon and ribavirin therapy, wiping the virus out of her system. She now works for the state.
Spencer Baker wasn't as lucky.
He was diagnosed as carrying the virus in 2002 and attended a 30-minute class his health provider required.
"The approach was not very concerned," said Baker, a recovering alcoholic who used intravenous drugs in the mid-'80s. "So my attitude was, 'This is no big deal.' "
But it was, and two years later, when he entered rehab, tests showed that his illness had reached the chronic stage. He had both cirrhosis and liver cancer and required a transplant to survive.
More than 3,150 Californians are waiting for liver transplants, said Sierra Donor Services spokesman Tracy Bryan, and almost 62 percent of them are between the ages of 50 and 64.
For Baker, the idea was to rid his body of hepatitis C while he was still on the waiting list, but interferon treatment in 2008 didn't work – nor did an attempt at interferon therapy in 2010, a year after he received his new liver.
He still has the virus.
"I've failed treatment twice, but that doesn't mean the end of the road," he said. "It doesn't mean I should give up. I've gotten time I wouldn't have had.
"People should be tested to avoid getting to this point."