Hep C Treatment Misconceptions Common Among People Who Inject Drugs and Their Healthcare Providers.
An estimated 55.2 percent of people who inject drugs are infected with the hepatitis C virus. Treating hepatitis C in people who inject drugs has become much more successful in recent years thanks to new, direct-acting antiviral therapies, which are more effective and have fewer side effects than older treatments. Public health and medical guidelines now advocate for treating the infection in people who inject drugs, regardless of the severity of the illness, current drug use, or other factors, to improve the health of both individuals and the overall population.
But misconceptions about treatment persist among people who inject drugs and among the healthcare and other service providers who work with them, according to a new study led by School of Public Health researchers.
The study, published in Harm Reduction Journal, lays out common narratives related to deferring hepatitis C treatment in people who inject drugs alongside the relevant facts and guidelines, providing a resource for healthcare and service providers and people who inject drugs themselves.
“We wanted to create a useful tool to equip them with current information and language to push back against inaccurate and potentially dangerous misconceptions, and encourage hepatitis C virus treatment for all who have it,” says lead study author Ellen Childs, a research scientist in the Department of Health Law, Policy & Management.
To gather these narratives, the researchers used data and quotes from interviews they conducted—among people who inject drugs and their healthcare and other service providers in Boston and Providence—for a previous study. For the new study, they looked at what the 33 people who inject drugs said about hepatitis C risks and treatment.
Of the 33 respondents, 26 reported having ever been diagnosed with hepatitis C. Their reasons for deferring treatment fell into three categories: a lack of concern about hepatitis C being a serious or urgent health threat; understanding the threat but not believing treatment was right for them at the moment; or perceiving or experiencing that clinicians or insurance companies would recommend against treatment.
Many respondents said hepatitis C was less of a concern than the immediacy of withdrawal symptoms or the threat of HIV. “Like, ‘you don’t have AIDS? All right, yeah, give me your needle,’” one woman from Providence said. “That’s like the first thing that people say to me ‘cause they always want my needle and I’m like, ‘look, well, I got—I got Hep C,’ and they’re like, ‘oh, we don’t give a shit about Hep C.’”
Among respondents who understood hepatitis C to be a health threat but avoided treatment, some said they did so because they had heard about or had experienced the severe side effects of older therapies. Others believed that they should prioritize recovery from substance use disorder first, to avoid simply becoming re-infected from sharing needles.
Other respondents believed or experienced that clinicians or insurance companies also wanted them to no longer be injecting drugs before beginning treatment for hepatitis C. Several mentioned the high price of the prescription, and said that they had been told by providers that they needed to be “clean” for a period of time before getting their “one chance” at having treatment paid for by Medicaid.
Using the information from these interviews, the researchers created a table of narratives about deferring treatment, and the relevant information and language to counter misconceptions:
| Narratives of PWID | Evidence | References |
| I do not think my HCV is bad enough to warrant treatment now. I know I am infected with HCV, but I am not worried about it now. My doctor says my HCV is not bad enough to warrant treatment. |
• Curing all HCV-infected PWID of HCV benefits individual and overall public health. • Given the high rate of transmission of HCV through intravenous drug use, reducing HCV infection prevalence in the PWID population will reduce the overall epidemic <• Some Medicaid programs use sobriety and prescriber restrictions to limit treatment access, which may deter physicians from discussing HCV treatment with patients with limited liver fibrosis; however, these practices run counter to current guidelines on treating HCV among PWID |
[40,13, 41] |
| I am afraid of the side effects of HCV medication. I want to avoid drug-related triggers. |
• New direct-acting antiviral treatments are well-tolerated with limited side effects, even among individuals who are difficult to treat • New treatments do not require injections that could be triggering for individuals in recovery from drug use. |
[14] |
| I want to wait until I am done using drugs so I do not contract it again. My doctor wants me to be more stable before I start treatment. |
• PWID are adherent to HCV treatment and have low rates of reinfection • Combining HCV treatment with medication assisted treatment for opioid use disorder or harm reduction services (e.g., syringe exchange) can support PWID in completing HCV treatment • Curing all HIV-infected PWID of HCV benefits individual and overall public health. |
[4, 42, 43, 44, 45, 46] |
| I am unable to get treatment while I am inside detox, jail or prison. | • HCV treatment availability in correctional settings varies, but research shows that it is feasible (though maintaining engagement in care post-release is a concern) and a growing number of facilities are providing therapy to incarcerated individuals {Beckman, 2016 #3713} | [47, 48] |
| The treatment is very expensive, so the insurance company want me to be clean before I start it. Medicaid will only pay for HCV treatment once, so I need to be sure I am done using drugs before I start treatment. |
• Testing and treating PWID for HCV is cost-effective • Some states with known Medicaid reimbursement criteria limit treatment to those with advanced liver disease, and other states’ Medicaid reimbursement criteria require substance use screening and documentation for treatment; however, these limitations are not in line with current HCV treatment guidelines. |
[49, 50, 8, 21, 13, 41, 7] |
“We wanted to create something that folks who may not have the time to be up on the current hepatitis C guidelines can use when discussing treatment with their clients,” Childs says.
The study was co-authored by: Dea Biancarelli, senior research assistant in the Department of Health Law, Policy & Management; Mari-Lynn Drainoni, associate professor of health law, policy & management; Angela Bazzi, assistant professor of community health sciences; and Sabrina Assoumou of the School of Medicine. The other co-authors were Alberto Edeza and Peter Salhaney of Brown University and Matthew Mimiaga and Katie Biello of Brown University and the Fenway Institute.
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