More people are being diagnosed with hepatitis C, and experts say the increase is due partially to the opioid epidemic and the use of shared needles.

Treatment to cure the infection is available, but it's expensive — tens of thousands of dollars — and most people don’t take advantage of it.

“Among the people that know that they have hepatitis C, only about 2 percent of them actually get treated for it,” said Alexandra Punch, director of the drug user health hub at ACR Health.

To combat that, ACR Health has been awarded a five-year, $500,000 grant from the state to create a hepatitis C virus navigator program to help substance users get tested and to help those who test positive to make it through treatment, Punch said. The program will begin Nov. 1.

Hepatitis C begins as an acute infection, which sometimes goes away on its own. But in 75 to 85 percent of cases, according to the Centers for Disease Control and Prevention, the infection becomes chronic, lasting for decades if untreated, and damaging the liver.

There are a number of reasons why so few patients get treated, Punch said. They might struggle to find doctors willing to treat them, either because they don’t have enough liver damage yet or because doctor don’t want to treat active drug users who risk re-infection, she said.

Some patients might avoid any medical care that requires them to talk about their drug use because of the lingering stigma applied to injection drug use, she said.

And patients might put off treatment because hepatitis C might not cause any noticeable symptoms for years or even decades, said John Arcaro, director of prevention and community initiatives for ACR Health.

The less-than-stable lifestyles of many injection drug users, which can make it hard to keep appointments scheduled months in advance, is another factor, Arcaro said.

“They’re worried about whether they’re going to find drugs for the next day,” he said. “They’re worried about where they’re going to eat, where they’re going to sleep and that’s a huge barrier.”

The state funding for the navigator program is part of a larger state plan, announced by Gov. Andrew Cuomo in July, to eliminate hepatitis C in New York, the first plan of its kind in the nation. It includes increasing access to medication, prevention screening and treatment. The plan includes $5 million in funding for new services, including patient navigation.

 

Changing demographics

 

Outside of New York City, more people in the state have died of hepatitis C-related causes than of HIV-related causes every year since 2007, according to state data.

Mirroring state and national trends, the number of cases of chronic hepatitis C among Oneida County residents went up from 107 in 2013 to 231 in 2016, according to New York State Department of Health data. The number dipped slightly in 2017 to 209.

Some of the hepatitis C increase comes from recent diagnoses of long-ago infections thanks to new guidelines recommending testing for all baby boomers, Punch said. But much of it comes from the current opioid epidemic.

There has been a demographic shift among hepatitis C patients; baby boomers used to be the most likely group to test positive, but in recent years the biggest increase has been among those between the ages of 15 and 29, Punch said.

Also, in the past, mostly men got hepatitis C, but that’s changed, too, in the last several years, she said.

“There’s a huge increase in the number of females who are getting it, especially those of child-bearing age,” she said.

That’s of particular concern because pregnant women cannot be treated for hepatitis C and they sometimes pass it on to their babies.

 

Ending stigma

 

Syringe exchange programs, such as the one run by ACR Health, are helping significantly, but not enough to stop new infections, Punch said.

Arcaro called on the public to help out by fighting back against the stigma that surrounds drug use, hepatitis C and HIV, another risk from shared needles. The stigma makes it less likely that people will look for help, get tested and get treatment, he said.

A lot of people still use, perhaps without realizing it, stigmatizing words such as addict, dirty and clean, Arcaro said. But opioid-use disorder is a widespread illness, not a choice, that affects brothers, wives, sons, friends, people who are loved, he said.

“I don’t know anyone whose family, friends, doesn’t have somebody in their life who’s not affected by HIV, AIDS, hepatitis C, drug use,” he said. “Those are certainly things that are more prevalent in certain populations, but they are everybody’s problem. I do think that using stigmatizing language is damaging.”

 Contact reporter Amy Neff Roth at 315-792-5166 or follow her on Twitter (@OD_Roth).