The sun was setting on Durant Avenue in Berkeley while six people sat in a waiting room. Offered a bittersweet opportunity—a free test for exposure to the hepatitis C virus—people trickled in throughout the day, most of them between the ages of 45 and 67.
Responding to mounting evidence of hepatitis C’s reach, the Centers for Disease Control recommended that all baby boomers be screened—regardless of reported risk factors like injection drug use. May 19 was the first National Viral Hepatitis Testing Day.
The Berkeley Free Clinic usually serves uninsured and indigent people. But when the CDC channeled its message through front pages of newspapers across the country, it changed the hepatitis C demographic—and the clinic’s patient base—for the day.
Dozens of older, employed, insured, and otherwise healthy individuals came seeking a test and advice. The estimate they’d read—that 1 in 33 baby boomers have been exposed—was persuasive.
On that Saturday, Testing-Day workers in California found results that roughly mirrored that projection. At the Berkeley Free Clinic, two of the 35 people that came in for testing showed antibodies for the virus.
The sounding of the hep C alarm to the non-drug user population created interest where there was none. It also revealed a deficiency of accurate information about an epidemic over thirty years in the making.
A 64-year-old woman from Albany said she read about the CDC’s announcement in the newspaper. The woman, who asked that her name be withheld, teaches English to adults in San Francisco. She had a blood transfusion in 1986, before blood supplies were screened for hepatitis C. She has private insurance and Medicare and sees a doctor regularly. But she doesn’t recall ever having a conversation about hepatitis C, or being tested for it. All she knew about hepatitis C was that it sounded scary.
Because it usually lives in the liver for decades before symptoms develop, many people exposed in the 1980s still don’t know they have hepatitis C.
With the worried others in the waiting room, she half-watched the Indiana Jones movie, Raiders of the Lost Ark, which the clinic staff played to occupy people waiting for results.
Although the plea for baby boomers testing has been sounded, and National Testing Day declared, no national—or even statewide—strategy for testing has been initiated. This is despite enormous health care costs for liver cancer, cirrhosis, and liver transplantation directly attributable to hepatitis C: over $2 billion in 2010 in California alone.
Still, 20 California medical clinics serving populations at risk for hep C hustled to take advantage of the publicity.
Their funds for this round of testing—used to pay for toolkits, blood paneling of uninsured people, and volunteer training—came almost exclusively by way of a grant from Merck, the pharmaceutical company and manufacturer of the new hep C rapid antibody test.
In the weeks before Testing Day, Berkeley Free Clinic workers used the 500 free tests donated by the manufacturer to go to at-risk populations. They brought their testing lab in a van to the corner of Hearst St. and San Pablo Ave., a few yards from the Thursday night needle exchange, where injection drug users make regular stops.
Its small size and speed makes the rapid antibody test a major innovation for addressing hepatitis C in populations that don’t regularly seek medical care. In the past, volunteers needed medical training to apply syringes, draw blood and analyze it for the presence of antibodies. The rapid test eliminates that need—the popsicle stick-sized device needs only a finger prick of blood. Within twenty minutes, a pink line forms if the blood contains HCV antibodies—indicating exposure to the virus but not necessarily infection.
When targeting street populations, the rapid tests show that 9 out of 10 injection drug users have been exposed to hep C.
But while statistics are alarming, funding remains tepid. Not a single dollar has been earmarked specifically for hepatitis C or the testing initiative, by the state or federal government.
Federal funding for hepatitis C prevention, testing, and treatment pales in comparison to earmarks for HIV, despite the fact that hep C-related deaths have outpaced those from HIV since 2007. The State Office of AIDS directs $8.8 million to California counties for HIV, “which may include hepatitis C testing for target populations,” but does not require it.
Even so, testing without education is insufficient, says Orlando Chavez, who heads the hepatitis testing, education and vaccination program at the Berkeley Free Clinic. In the past few years of lobbying for resources for hepatitis C, Chavez and others have wrangled with bureaucracies over important details.
Because little knowledge about hepatitis C is available on the street, word choice matters for hep C outreach, something that Chavez stresses to trainees. Until activists forced the change, state training guidelines still used ‘positive’ and ‘negative’ to read HCV tests.
These words are easy to remember, says Chavez, but ultimately inaccurate. Confusion about exposure versus infection leads to unnecessary panic and fear: about a quarter of people exposed clear the virus spontaneously, and many who become infected will never get sick.
“People get freaked out because they had a ‘positive’ test,” says Chavez. “We’re calling it ‘reactive’ versus ‘nonreactive.’” Testing is a waste of resources, he says, if clients leave without understanding what the result means, and unsure of what to do next.
Though most cases of chronic hepatitis C have been reported in middle-aged people, many hep C experts stress that the virus spreads most widely in hidden populations. Therefore, they say, the surveillance issue is something of a Catch 22.
The CDC based its recommendations on the NHANES survey, which gave a widely cited estimate for the number of Americans infected with hepatitis C: 3.2 million, mostly between the ages of 48 and 67.
But epidemiologists are quick to point out that the NHANES survey left out significant segments of the population. Those at highest risk for hepatitis C—people who were homeless, incarcerated, in the army, or hospitalized at the time of the survey—were excluded.
Experts say the most conservative estimates suggest there are 5.2 million Americans living with hepatitis C, 75 percent of who do not know it. Despite recent promising innovations in hep C medicine and testing tools, hope of eradicating the virus is still distant.