In 2014, hundreds of Rhode Islanders died from accidental drug overdoses. Thousands more remain addicted to prescription painkillers and heroin. For those who inject the drugs, there’s another risk: hepatitis C.
In the final story in our series “At the Crossroads,” we meet a team of outreach workers determined to find new infections before it’s too late.Fueled by injection drug use, new hepatitis C infections are on the rise. Listen to the last story in our eight-part series, "At the Crossroads."
Bringing disease prevention to the streets
Every Tuesday, Arien Daly and Keith Thompson load up their yellow van with supplies and hit the road. They’re part of a mobile outreach team that brings disease prevention to the streets. Thompson steers the van onto the highway.
“Right now we’re headed for Woonsocket. They have a soup kitchen they serve lunch at, I think, 11 to 1. And we usually go there and tell people that we’re here, I pass out condoms, let them know that the van is outside if they want to get tested.”
Thompson and Daly work for AIDS Care Ocean State, a nonprofit that started out helping people with HIV and AIDS. But ACOS noticed a rising number of hepatitis C infections among their clients. So these days, ACOS offers HIV and hepatitis C testing and education. Thompson and Daly focus their efforts on injection drug users because they’re at the highest risk for catching hep C. They try to connect them with treatment. But for those who aren’t ready yet, the van is stocked with sterile needles and other supplies.
“We don’t judge them,” says Thompson. “It’s easier for them to come to us than go to a clinic. They feel more comfortable.”
“We’re very trained to deal with these sorts of situations,” says Daly. “I think we’re more sensitive and understanding.”
She’s talking about people who inject drugs, who might also be homeless or barely making ends meet. People who, deep in their addictions, have fallen under the radar. But she’s noticed something else about them.
“There definitely is a younger population that’s using injection drugs,” says Daly.
Daly offers regular testing and needle exchange services at a few other locations in Rhode Island. On her rounds, she’s noticed her clients are not only younger, but more of them are testing positive for hepatitis C. While that’s just Daly’s personal, unscientific observation, there’s evidence the surge in new infections is widespread.
Epidemiologists on alert
Brown university epidemiologist Brandon Marshall has been recruiting young injection drug users into a new study to learn more. The concern, he says, is that hepatitis C is much more contagious than other blood-borne diseases. A single, microscopic drop of blood can be teeming with hep C. And injecting drugs can be bloody.
“So if someone starts injecting, they have about a 50 percent chance of becoming infected with hepatitis C within three years,” says Marshall. “So that’s a very high rate, risk of infection.”
The risk is becoming reality. Enough to alarm the Centers for Disease Control and Prevention. John Ward, head of the CDC’s Viral Hepatitis division, says the agency has just funded new research projects designed to get a handle on the trend.
“We need to know more about the scope of the problem. We need to know more about the characteristics of the drug use behavior among the population so we know how to intervene,” Ward says. “This is clearly a new phenomenon.”
Ward says he first noticed an uptick of new cases in 2009. Since then, new hepatitis C infections have shot up nationwide. The most recent estimate shows 20-thousand new cases cropped up last year.
“And that’s about a 50 percent increase in just two years,” says Ward. “And 17 states have reported a 200% increase in incidents.”
States like Massachusetts, Virginia, and Tennessee. But Ward doesn’t know exactly how big the problem is, partly because most people don’t get tested.
If people don’t get tested, they don’t get reported,” Ward says. “And because of our surveillance system being so limited, even when they do get tested that report may not get forwarded to the health department and then on to CDC. We fully recognize that this is just a fraction of the total population of persons becoming infected with hepatitis C.
To Ward, it’s clear we’re in the midst of a new hepatitis C epidemic, fueled by injection drug users sharing needles and other paraphernalia. Brown epidemiologist Brandon Marshall says clean needle exchanges helped combat the AIDS epidemic among injection drug users in the 90s. But the lessons of that epidemic have yet to be fully applied to hepatitis C.
“There is a concern that new, young injection drug users don’t know about those services or aren’t accessing them,” says Marshall. “And that’s where we really need to get the word out that those programs do exist and using those services can decrease your risk dramatically.”
Offering testing, treatment, and hope
Thompson and Daly pull the van into a church parking lot in Woonsocket. They’re here for two reasons: to offer supplies that help people prevent hepatitis C and HIV, and to test people for those infections.
Thompson opens the back of the van and sets up his mobile testing station – needles for pricking fingers, alcohol swabs, questionnaires on clipboards.
“We can’t stop people from doing what they’re doing," says Thompson as he gets ready, "but at least we can help them be responsible and safe.”
His first client of the day wants to be tested for hepatitis C. She takes a seat on the carpeted floor of the van and rolls up her sleeve.
Thompson pricks her finger, and collects a drop of blood on the testing stick. In a few minutes, she’ll have an answer.
While Thompson quizzes her about health risks, his colleague Arien Daly preps the needle exchange kits on the front seat of the van. She opens a brown paper bag to show me what’s inside.
“What comes in this, you have your clean cookers,” says Daly, pulling out a small tin can, the size of a tea light. “Clean water. You can see we have ties in there. And then of course we have our two sizes of needles we carry in our bags,” says Daly. “We’re talking about anything where blood is going to be. You have the possibility of spreading infectious disease. And that’s what we want to stop.”
Just as Thompson and Daly get ready to pack up the van and make their next stop, a young woman with a long brown ponytail approaches. Her name is Nicole. She didn’t want to use her last name because of the stigma she and her family could face. She’s not here for the needles. Not this time.
“I’ve been clean for nine months,” she smiles.
“Good for you! That’s awesome.”
Nicole found out she had hepatitis C about six months ago. But it was more than a decade ago that she began using opioids – at first, a prescription for the painkiller Demerol, after a C-section.
“They weaned me to Percocets, then to Vicodins, and then to nothing,” Nicole says. “And I was sick. And a friend of mine told me, well there’s this stuff called heroin. It’s cheap. You’ll feel better. I started doing it, and that was it.”
Things got so bad for Nicole that she shared needles with someone she knew had hepatitis C.
“And because I was sick, I didn’t care,” Nicole remembers. “I didn’t have a needle to use and they had one. Even though they warned me, I was sick. For anybody who doesn’t know, being dope sick is equivalent to the flu times 500, so I would have did anything.”
Nicole says she got sober when her twin sons told her they didn’t want to read about her in the newspaper.
“So that was enough to snap me into reality to realize my sons are old enough to read the paper,” says Nicole, “and if something did happen to me that’s how they would find out.”
For Nicole, that also means treating hepatitis C. Keith Thompson gives her the good news.
“So we’ll set you up with some treatment,” Thompson tells her. “Because you know there’s a cure for hep C now?”
“I know but I’ve been having trouble finding it,” Nicole says.
“We can get you in there for free,” Thompson says. “Don’t even worry about it. See you tomorrow at 11 o’clock, ok?”
“Thanks very much, Keith.”
If Nicole keeps that appointment, she’ll find out just how badly the hepatitis C virus has damaged her liver. And that could determine whether or not she starts treatment right away. New drugs introduced just this year have been shown to cure hepatitis C in most patients – much more quickly, and with almost none of the side effects of the old treatment. But they are so expensive, she won’t get a prescription automatically. Private and public insurers are deciding patient by patient who gets the pills now, and who has to wait.
Thompson and Daly pull out of the church parking lot and head to their next stop: a public park in Woonsocket. Several needle exchange clients will be waiting for them there. Maybe some will agree to be tested for hepatitis C, and glimpse the possibility of a new life.
This series was supported by The California Endowment Health Journalism Fellowships, a program of the USC Annenberg School for Communication and Journalism.