A middle-aged man hesitantly enters the CORNER Project syringe exchange program’s office on 176th Street and Wadsworth Avenue in Washington Heights.
“How are you doing today?,” asks Taeko Frost, program director at the CORNER Project, who is in charge of hepatitis C testing. “You OK?” She will be testing him for hepatitis C, a chronic disease affecting the liver.
A lot of information is crammed into these close quarters. The walls are plastered with posters and flyers about hepatitis C: testing, treatment and prevention.
The man, who asked for anonymity, takes a seat and rolls up his sleeve. Taeko explains the risks of sharing needles and cotton when using injected drugs with others and emphasizes the importance of a healthy diet and safe sex, regardless of this blood test’s results.
She gently taps his large, muscular arm for a vein, laughing as he jokes about having none left. She fastens a blue elastic band around his arm; he winces as she inserts the needle.
With a government estimate of 4 million Americans infected, viral hepatitis C infections are three to five times more common than HIV, according to a 2010 study by the National Institute of Medicine. The study adds that in the next 10 years, about 150,000 people in the United States will die from liver cancer and end-stage liver disease associated with chronic hepatitis B and hepatitis C.
And more people are infected with Hepatitis C in New York City than anywhere else in the country, says Dawn Kalmar, spokesperson for Vertex Pharmaceuticals, which makes the Hepatitis C medication INCIVEK. She cites the Hepatitis C Index by the National Minority Quality Forum, an organization that studies health care issues among ethnic communities in the United States, which says 150,000 New Yorkers are infected.
Yet many health workers argue that the disease hasn’t gotten the attention necessary to make people more aware of preventing infection. And since it is symptomless, those infected can spread the virus without realizing it.
Uptown, health professionals also worry that the disease is rising. “Drug use is increasing in Harlem with the increase in poverty,” says Jeffrey Day, a mental health nurse practitioner at Citicare, a Harlem family health clinic. “More people are turning to drugs – as both dealers and users – when they give up hope of finding jobs and houses, and they are unaware of how easily they can contract and transmit Hepatitis C.”
Many of the people Frost’s organization helps are homeless and disconnected from health care. The Corner Project guides them through the first three steps of Hepatitis C testing: pre-test counseling and a full blood draw sent to a lab, with results in 48 hours.
If patients test negative, they’re told how to prevent infection by using sterile needles, not sharing cotton or cookers or straws (the disease can also be contracted nasally), avoiding unlicensed tattoo and piercing parlors and practicing safe sex. If patients test positive, they are referred to treatment programs.
But routine physical exams don’t usually test for hepatitis C, Kalmar says.
Vertex recently underwrote a guerilla marketing campaign called the “Find HepC” campaign, which consisted of posters, fliers and volunteers talking to people on the streets across the city; its enigmatic blue and yellow slogans featured a large yellow “C” and the words “4 million have it, 3 million don’t know.”
African-Americans and baby boomers are disproportionately impacted. “One in seven African-Americans over 55 are infected,” according to the National Minority Quality Forum’s report. And
Americans born between 1945 and 1965 are at risk of infection because they grew up in an era of less emphasis on safe sex and the importance of clean needles when injecting drugs or getting tattoos.
“Approximately 15 percent of people clear hepatitis C on their own during the first few months of infection without treatment,” said Nihar Johnson, project specialist at the city health department’s Office of Viral Hepatitis. “They ‘cure’ themselves.”
After six months of active infection, a person is considered chronically infected, according to Johnson, who added that people can be treated during the chronic phase. If the viral load drops to undetectable levels and remains undetectable for six months after medical treatments has stopped, that’s called a ‘cure.’
“Certain types of Hepatitis C are easier to ‘cure’ than others,” Johnson said. People with HIV, African-Americans, Latinos and those with certain other health problems are less easily cured, she added, but with new medications, the cure rate has risen for everyone.
“However, there are many factors involved in treatment success and every case is different,” Johnson said.
Kalmar added that INCIVEK, approved by the FDA in May, could increase cure rates among black Americans.
Despite the Big Yellow C, there aren’t enough awareness campaigns uptown, to reach the people most at risk of contracting and spreading the disease, Frost says.
“The Department of Health just put out a new TV ad to spread awareness, but our participants are not necessarily watching TV,” she said. “It’s not applicable to our population.”
Frost says the health department needs more staff working with community groups to reach people on the streets, actively seeking out drug users and encouraging them to visit testing centers.
“These people feel isolated and stigmatized,” Frost says. “Even if they think they’re at risk, they might not know where to go.”
The invasive nature of testing and treatment for Hepatitis C, involving medications that may have difficult side effects, also deters people, Frost says.
“We are a small program, and do our best to do outreach in Inwood and Hamilton Heights, as do other small drug treatment programs,” she said. “But it’s about being creative, thinking about who is actually at risk and the best way of reaching them.”
Charlie, who’s 65, is a frequent visitor to the CORNER Project. Tall even when sitting down, he taps his black cane and recounts the dietary concerns his hepatitis C infection raises. Because of the disease’s harsh effects on the liver, patients have to avoid oily and sugary foods, as well as alcohol.
“See, I’m black and I like my fried chicken,” Charlie chuckles. “But because of the oils, it hurts when I eat it. So I have to have everything broiled and baked, even though fried chicken tastes damn good.” Since his 2001 diagnosis, Charlie, who asked that his last name not be used, has had to make a lot of changes.
”The counselor taught me a lot about eating healthy,” says Charlie. “He told me that once a month he’d splurge on fried chicken, but mostly he advised us to stay away from it.”
For Charlie, the worst thing about living with the disease has been the medication. The treatment affects his mental state, prompting doctors to prescribe an array of additional drugs to deal with its side effects.
“Six pills a day, two shots a week, and then the sleep medication, eating medication and anxiety medication,” Charlie says with a resigned smile. “I’m walking around with so much medication. I started a pill factory at one time.”
He has discontinued medication, but says, “I’m looking for new meds, something I’d be really interested in if it’s going to cure me.”
While Frost believes that New York has been a leader in HIV prevention and testing, as well as providing special services for those with HIV, the city has not responded as urgently to Hepatitis C.
“I think most people in New York can tell you what HIV is because there is so much education around it and a great emphasis on testing and services,” she says, pointing to the fact that the people most at risk for hepatitis C are drug users, not always considered a priority for health services.
One improvement would be to introduce rapid testing for Hepatitis C, she says, something that appears more likely since last month when OraQuick becamethe first rapid test to win FDA approval.
“We have a long way to go but I think rapid testing is very important because we’ll be able to use it on the site where people are,” says Frost. It’s less invasive than a blood test and won’t require refrigeration or laboratories. But will take time for free rapid testing to become broadly available.
For now, Charlie is happy to watch what he eats and avoid alcohol. He eventually hopes to give up his other damaging habits too.
“The more I think about me and my liver, the more I think about how much life I have left,” he muses.
“I’ve been doing drugs for over 30 years and I’m not getting anything from it anymore. So I think it’s best to go back away from it all, and go ahead and live my life the best way I can.”