Catherine Delauro knows how it feels to be judged.
“For years of my life, I’ve let myself be defined by the words of others,” Delauro said. “Addict, junkie, criminal.”
At an event for HepConnect, a new initiative to fight hepatitis C in North Carolina, Delauro shared how that stigma can keep drug users from seeking medical care. Delauro spoke on behalf of the Urban Survivors Union, which represents drug users and people affected by drug use.
“With all those labels, it’s so much harder to go get tested for hepatitis C and add one more notch to that,” Delauro said.
HepConnect is a five-year program that will partner with organizations in North Carolina, Kentucky, West Virginia, Tennessee and Indiana. The program, which has $11.3 million for the first year, will focus on the overlap between the opioid epidemic and rising hepatitis C infections.
It will provide grants for expanding screening for hepatitis C, supporting harm-reduction strategies like needle exchanges and community education, and equipping existing health-care infrastructure to deal with hepatitis C. A proposal process will open up this summer to apply for HepConnect money.
HepConnect is a project of Gilead Sciences, which makes hepatitis C treatment drugs, and the Harm Reduction Coalition, a national nonprofit that advocates for the health of drug users.
“We’re hoping to provide support to a variety of program models, not the least of which is community organizing,” said Monique Tula, executive director of the coalition.
Gilead created a breakthrough drug, Sovaldi, which was the most effective treatment for hepatitis C when it came out. The company received some criticism for its price: $1,000 per pill, or $84,000 for the whole treatment. It has since released other hepatitis C medications, including cheaper, generic versions of some of its drugs.
At a Forbes health-care summit in 2016, Gilead’s former CEO, John Milligan, said the company failed to understand how many people needed the drug immediately.
Dr. Jill Foster, senior director of Government Affairs for Gilead and a pediatric infective disease specialist, said the company’s goal with this program is “to improve patient care in areas of unmet medical need.”
Foster began working with Gilead sponsored programs as an HIV doctor. Gilead began looking at hepatitis trends, and Foster said they didn’t expect to find such high numbers of hepatitis C in younger people. They realized they needed a coordinated approach to both hepatitis C and the opioid epidemic.
The initiative was launched out of Kentucky, based on need Foster’s team saw there, but they realized rates of hepatitis C infection were rising across the Appalachian region.
“The more we’ve expanded screening in these areas, the more we’ve found,” Foster said.
State Rep. Gayle Adcock, who represents North Carolina’s 41st district and has nearly 30 years of experience as a nurse practitioner, spoke at HepConnect’s event on Tuesday.
“No one in this room can fight a public health crisis of this magnitude alone,” she said.
Hepatitis C is caused by a virus that attacks the liver and, unlike hepatitis A or B, can be passed through blood. The Centers for Disease Control and Prevention reports the risk of transmission through sex is “believed to be low,” and that it is more commonly transmitted through sharing needles or syringes.
Hepatitis C can be a short-term disease, but in up to 85% of cases it becomes a chronic illness. The disease is treatable, but many people don’t know that they have it.
The virus kills more Americans than any other infectious disease, including nearly 20,000 people nationally in 2017, the CDC reported.
The N.C. Department of Health and Human Services estimates there are over 110,000 cases of hepatitis C across the state and says over 500 people died from hepatitis C in 2016. The CDC estimates there were more than 2.4 million people living with chronic hepatitis C in the United States in 2016.
While hepatitis C has traditionally affected baby boomers more than other sections of the population, we are now seeing growing numbers of people in their 20s and 30s with the disease.
As the N&O has previously reported, hepatitis C is a major concern in prisons. A judge recently required North Carolina prisons to provide more treatment for inmates with the virus.
System change, individual health
Foster said they have already seen health-care providers change how they think about hepatitis C treatment.
“It’s really about forming partnerships,” she said. “The whole goal is really to hear from them what their solutions need to be, because North Carolina is going to be different than Kentucky, and have all of these be about sustainability.”
Harm reduction focuses on basic life support for drug users, keeping them alive until they’re ready to move into treatment.
“There hasn’t been a ton of political will or resources made available to people who are struggling with addiction, apart from treatment,” Tula said. “But they have to be ready to move into treatment before you can even get there. So what happens before then? Well, they’re at risk for hepatitis, HIV, endocarditis, and of course they may be at risk for fatal overdose.”
Delauro has struggled to find the health care she needs in the past, and she choked up sharing her experiences with a room of health-care providers and harm-reduction specialists.
“Drug users care about their health,” she said. “And we’re struggling every day just to be strong enough to go on.”
Hepatitis C risks and warning signs
Anyone who has injected drugs, even if it was just once and years ago, should be tested for hepatitis C.
Anyone who received donated blood or organs before 1992 should be tested.
Symptoms of an acute hepatitis C infection include: fever, fatigue, dark urine, abdominal pain, appetite issues, joint pain, jaundice
North Carolina provides free, risk-based testing for hepatitis C in all local health departments.