ATTC Messenger May 2014: Hepatitis C Services in Substance Use Treatment Settings
Availability and Use of HCV Services in Substance Use Treatment Settings
Librarian, Alcohol & Drug Abuse Institute, University of Washington
CTN Dissemination Library
Hepatitis C virus (HCV) was first properly identified in the 1980s, when it became apparent there was a new virus causing liver damage that wasn’t hepatitis A or B. Twenty-five years after it was officially dubbed “C,” more than 130-150 million people are suffering from this chronic infection globally, with 350,000-500,000 dying each year from hepatitis C-related liver diseases
(WHO factsheet, April 2014). 1
HCV is a critical public health challenge among drug users. Substance use, particularly use involving the sharing of needles, syringes, or other injection equipment, is one of the primary vectors for the spread of HCV. Complicating matters, infected individuals who actively use or abuse substances have significant challenges accessing and adhering to care, contributing further to the spread of the disease. Deaths due to HCV have long since surpassed those due to HIV/AIDS, 2 making prevention efforts increasingly imperative.
For these reasons, research into the role of the substance use disorder treatment system in responding to infections like HCV is receiving increasing attention.
The National Drug Abuse Treatment Clinical Trials Network (CTN), funded by the National Institute on Drug Abuse (NIDA), has conducted two health services research studies about the hepatitis C virus, examining the availability of HCV-related services in substance use disorder community treatment programs, as well as barriers that keep patients from accessing those services.
The first of these two studies, “Characteristics of Screening, Evaluation, and Treatment of HIV/AIDS, Hepatitis C Viral Infection and Sexually Transmitted Infections in Substance Abuse Treatment Programs,” 3 surveyed state substance abuse and health department administrators, as well as substance abuse treatment program administrators from each of the CTN’s original 319 treatment programs, to obtain a profile of the availability and priority of health services for HIV/AIDS, HCV, and sexually transmitted infections (STIs) across the country.
The survey focused on two categories of infection-related health services: medical (medical history and physical examination, biological testing, treatment, and monitoring) and nonmedical (patient education, risk assessment, and counseling).
Data revealed that HIV/AIDS services were more frequently available than HCV- or STI-related services, and that nonmedical health services like patient counseling were more available than medical ones. HCV-related medical history and exam services were available in 68% of programs in a hospital, university, or health center setting, but in only 47% of freestanding substance abuse treatment programs. Only 28.9% of programs offered HCV treatment either on-site or via referral.
Additionally, while the availability of infection-related health services was associated with medical staffing patterns, addiction pharmacotherapy services, and state priorities, the number one factor was reimbursement, suggesting that greater funding of these services in substance abuse treatment settings, facilitated by supportive state policies, would be an effective response to the excess morbidity and mortality of HCV and other substance use-related infections.
Treatment for HCV has become increasingly effective, yet early detection remains important. Despite the fact we know injection drug use is a major risk factor for HCV infection, research has found that few drug users have actually been evaluated or tested for HCV. Additionally, racial and ethnic minorities have a higher incidence and prevalence of HCV, yet also report more barriers to access of HCV-related services.
The second HCV-related study in the CTN, “Access to HIV and Hepatitis Screening and Care Among Ethnic Minority Drug Users In and Out of Drug Treatment,”4 aimed to identify some of those barriers in an attempt to better understand and correct factors contributing to poor engagement in care for minority populations. The study surveyed 14 mixed-gender focus groups of either African American or Latino/a drug users in New York City and San Francisco. Participants were recruited from three settings: HIV primary care clinics, methadone maintenance treatment programs (MMT), and syringe exchange programs (SEP).
Nearly all the focus group participants reported having been tested for HCV at least once, primarily at the settings from which they were recruited for the study. Most were eager to access voluntary HCV testing more often, but, as one African American male in the study said, “Most people just don’t know where to do it, unless you go to the exchange and they happen to be doing it there.” HIV testing was reportedly easier to find and access than HCV testing, and, in fact, many of the participants said they self-initiated HIV testing every 3-6 months.
Many of the participants who had tested positive for HCV complained about a lack of information, saying they came away from their tests without a clear understanding of what a positive result meant for their health, or what they should do next. “They won’t refer you to nobody,” one African American female said. “See, they just told me and just left me hanging. Just left me there.”
This lack of information and support left some participants feeling hopeless: “I don’t know what to do. Except just walk around and die from it,” said one African American male. Participants weren’t sure if treatment was available, if they were eligible for it, or if it was necessary in the first place. In a few cases, because their providers didn’t mention treatment, participants assumed the test results were incorrect – if they were really positive, after all, wouldn’t their provider have referred them somewhere for more care?
Though some participants were evaluated for HCV treatment, many said they were told by their health providers that treatment was only necessary if damage to their liver was found. Additionally, while they were eager to learn more about treatment options and how to stay healthy, most of their knowledge came from peers, and the treatment-related messages they received were often discouraging. The low odds of eradicating the virus deterred some from accepting offered treatment, as did fears of a lengthy treatment process and serious side effects of the medications used, which some had heard could be more harmful than the disease itself. “If it ain’t broke, don’t fix it,” one participant remarked, believing it was safer to avoid treatment until it was totally necessary because of the risk of adverse effects.
A lot of participants, aware that HCV was a virus affecting more drug users than non-drug-users, believed that the paucity of services and treatment options were the result of stigma against injection drug users. Mistrust of health care providers’ motivations manifested in a variety of ways, with some patients reporting they felt mistreated by their providers because they didn’t have private insurance, and others theorizing their providers were diagnosing, or even misdiagnosing, HCV to receive more insurance payments for their visits.
It is estimated that about 60-90% of drug users are affected by HCV. This study reveals important information about the gap between testing and referral to further medical evaluation following a positive HCV test result. Additionally, it suggests this gap is not, as is often assumed, solely due to patient non-adherence, but instead is influenced by a lack of clear information and support from test providers.
Despite the role of substance abuse in sustaining the HCV epidemic, the data shows that many substance abuse treatment programs do not offer comprehensive HCV-related services. It’s clear from these two studies, however, that substance use disorder treatment organizations could play a big role in helping to increase rates of testing and treatment among drug users at risk for or diagnosed with HCV, an important strategy in reducing HCV infection at both the individual and population level. While the NIDA Clinical Trials Network has accomplished a considerable amount in its 14 years of operation, there is still a lot more to do before it can fully realize its goal of improving the quality of drug abuse treatment with science as the vehicle.
1. Hepatitis C factsheet. World Health Organization. Updated April 2014. http://www.who.int/mediacentre/factsheets/fs164/en/
2.Deuffic-Burban S, Poynard T, Sulkowski MS, Wong JB. Estimating the future health burden of chronic hepatitis C and human immunodeficiency virus infections in the United States. J Viral Hepat. 2007;10:107–115.
3. Brown LS Jr, Kritz S, Goldsmight RJ, et al. Health services for HIV/AIDS, HCV, and sexually transmitted infections in substance abuse treatment programs. Public Health Rep 2007;122(4):441-451. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1888517/
4. Jordan AE, Masson CL, Mateu-Gelabert P, et al. Perceptions of drug users regarding hepatitis C screening and care: a qualitative study. Harm Reduction Journal 2013;10:10. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3695813/