Beneath the surface

In the mid 1990s, amid the crush of patients with drug addiction, Dr. Diana Sylvestre noticed a condition many had in common. Injection drug users not only battled their substance issues, but often also the liver-ravaging disease hepatitis C.

Uninfected, these people struggled to find medical care; with hep C, “no one would touch them,” she told the CN&R by phone. Treatment at the time was injected, carried harsh side effects and could take a year—if it worked.

“It was hard, regardless of who they were; then you add on the layers of addiction, mental illness and homelessness, and it was an [apparently] impossible task. But, if somebody was going to die of hepatitis C,” Sylvestre added, treating them struck her as “the ethical thing to do.”

So, 20 years ago, in response to the hep C wave she saw in the Bay Area, she established a nonprofit that operates the Oasis Clinic in Oakland. Sylvestre also travels weekly to Ukiah to see patients in that rural community and conducts research as an assistant clinical professor at UC San Francisco.

Treatment options have expanded over the years. So, too, has the demographic spread of hep C. The age of people getting infected skews younger, both statewide and nationally—a trend health experts connect to the opioid epidemic.

“There’s a lot of evidence that that would be the case,” said Dr. Linda Lewis, health scientist at the Butte County Public Health Department. “We know that injection drug use is increasing; we also know that injection drug use is the primary cause for hep C.”

Other causes include “high risk” activities associated with youth: unprotected sex, unsanitary tattoos or piercings, shared razors. Transfusions before 1982, when hep C screening became mandatory for donated blood, also represent a risk. By far, injecting narcotics from a needle used by someone else poses the greatest danger.

“I’m sure there are some people who do that and get lucky,” Lewis said by phone. “That’s a very high-risk behavior.”

In the most recent statistics available from the California Department of Public Health, through 2015, the state experienced a 55 percent increase of hep C cases among men in their 20s and a 37 percent increase among women that age over eight years—comparable to national numbers.

Butte County has experienced an overall rise, from 318 cases reported in 2013 to 359 last year (13 percent). Lewis said the incidence among younger groups hasn’t matched the broader trend, “but I will not be surprised if I see it; it could be in this year’s data.”

Lewis, who studies the spread of diseases for Public Health, noted that hep C “is usually diagnosed as a chronic disease, and so there can be many years between when the person was infected and when they’re diagnosed.” Acute diseases, by contrast, yield symptoms and sickness quicker.

Sylvestre pointed to another possible reason local statistics differ from the state. Particularly in rural areas, she said, testing takes place “where young injection drug users—or even young drug users, period—are unlikely to surface.” Butte County statistics “may even be correct, but I bet you’re missing the majority of kids with hepatitis C,” she said, because they don’t tend to seek medical care except for emergencies, in emergency rooms. Hep C primarily gets diagnosed by primary care physicians.

Doctors check for hepatitis C when they have reason to suspect the disease. Both Lewis and Sylvestre explained that people who contract it usually are “asymptomatic”—free of symptoms—long after they get infected. Physicians mostly order tests based on the behaviors associated with hep C.

“One of the difficulties is there isn’t anything that’s pathognomonic, where if you have that symptom we know you have that disease,” Lewis said. Two early symptoms are fatigue, associated with a variety of medical conditions, and jaundice (yellowing of the skin), associated with various liver conditions.

Testing for hep C is a two-step process—another pitfall for diagnosis, recently addressed by Butte County Public Health. The initial screen checks for hep C antibodies in a patient’s blood. A positive test indicates the person should get a second test, for hep C virus, which shows if the body has fought off the disease.

The gap comes with those who never receive the confirmatory test. In the time between screenings, Lewis said, the patient may move, not hear from the doctor’s office or miss the next test. Whatever the reason, “they aren’t aware of their true status. They may not even know for sure they tested positive … [or] think they’re infected when they’re not.”

Public Health has focused on follow-ups. Officials worked with local hospitals and labs to establish a “reflex test” protocol in which a positive antibody result automatically triggers a virus test, instead of requiring a physician’s order. The department also “piggy-backed” hep C testing on a grant-funded program for rapid testing of syphilis.

Treatment has progressed from injected interferon with ribavirin—medications with adverse effects and cure rates less than 50 percent—to pill regimens with fewer, milder complications and cure rates over 90 percent. Access is limited: Dr. Andrew Miller, Butte County’s public health officer, told the CN&R by email that these drugs are prescribed locally by gastroenterologists and infectious disease specialists (more so than primary care practitioners); clinics that offer treatment are hard to get into.

Harvoni is the mostly widely known drug, due to advertising; Sylvestre also highlighted Mavyret, an eight-week course, and Epclusa, a 12-week course—each covered by Medi-Cal and Medicare for hep C patients suffering acutely with long life expectancy. “Private insurers are another matter,” she said, routinely balking at the cost. Once $100,000, hep C medicine now runs $25,000 out-of-pocket.

“The treatments, the medications, are remarkably wonderful,” Sylvestre concluded. “The main challenge these days has drifted away from concerns about side effects and efficacy to access.”