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. Author manuscript; available in PMC: 2019 Mar 27.
Published in final edited form as: Health Promot Pract. 2018 Sep 18;19(6):815–822. doi: 10.1177/1524839918799455

Talking about Hepatitis C: FAQs from Young Adults who Inject Drugs

Lauren L Knight, Katherine Wagner, Yuridia Leyva, Veronica R Bruce, Kirsten A M White, Yvonne S Talamantes, Brittany Price, Kimberly Page, Martha L Carvour
PMCID: PMC6436913  NIHMSID: NIHMS1009068  PMID: 30227752

Abstract

Introduction:

Young adults who inject drugs and live in rural communities are at high risk for hepatitis C virus (HCV) infection. Recent changes in HCV treatment must be communicated within these communities to improve access to care and reduce HCV transmission.

Methods:

Field workers in the ¡VÁLE! Hepatitis Treatment and Integrated Prevention Services study identified Frequently Asked Questions (FAQs) posed by high-risk, young adult participants during HCV screening and educational sessions. From 2016–2018, 183 young adults (44.3% women; 85.8% Latino/a) under the age of 30 who inject drugs and reside in Rio Arriba or Doña Ana counties in New Mexico were enrolled. The research team compiled de-identified questions during field enrollments.

Results:

FAQs were reviewed and categorized into four major domains, including risk/prevention, screening, treatment, and reinfection. FAQs were addressed by a team of medical and public health professionals, utilizing the most current research and recommendations.

Conclusions:

These FAQs address important gaps in HCV knowledge among young adults who are at high risk for infection. The FAQs also highlight the importance of risk reduction counseling provided by frontline public health providers as well as access to safe and effective HCV treatments for young adults who inject drugs.

Keywords: Hepatitis C virus, harm reduction, rural health, young adults, injection drug use

INTRODUCTION

Approximately 3.5 million Americans are chronically infected with hepatitis C virus (HCV) (Edlin et al., 2015). The majority of newly acquired HCV infections occur in young adults who inject drugs and reside in rural areas of the United States (U.S), making this group an important focus for health promotion efforts (“Surveillance for Viral Hepatitis-United States, 2015,” 2017; Suryaprasad et al., 2014; Valdiserri et al., 2014; Zibbell et al., 2018). Meanwhile, safe and effective medications for curing HCV have recently been approved. These exciting developments offer, for the first time, the opportunity to substantially impact the epidemic of HCV by curing the virus in large numbers of patients, including people who inject drugs.

In this new era of HCV treatment, public health initiatives are needed to dispel misconceptions about HCV in high risk populations. Frontline public health providers should be equipped with up-to-date information about HCV in order to offer effective counseling in the field, particularly among young adults who inject drugs. In the ¡VÁLE! Hepatitis Treatment and Integrated Prevention Services study, we enrolled 183 young adult patients (44.3% women; 85.8% Latino/a) who inject drugs and reside in rural New Mexico between 2016 and 2018. We collected a series of frequently asked questions (FAQs) about HCV from study participants. Here, we offer these questions alongside up-to-date, evidence-based responses to each question that other providers and educators can apply in their own work.

RESEARCH SETTING AND METHODS

¡VÁLE! Field Environment

¡VÁLE! study staff traveled to two field enrollment sites in rural New Mexico in a mobile clinic van (Figure 1) where they engaged with individuals interested in the study. The primary study site was located in Rio Arriba County (Figure 2) and was co-located at the Santa Fe Mountain Center, which hosts a syringe services program and is co-located with other preventive, recovery, and treatment programs for persons who inject drugs. A secondary study site in Doña Ana County (Figure 2) was located at a drop-in center offering access to multiple services, including syringe exchange, case management, and a health clinic.

Figure 1.

Figure 1.

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Photo of ¡VÁLE! study mobile clinic van at the Santa Fe Mountain Center in Rio Arriba County, New Mexico

Figure 2.

Figure 2.

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¡VÁLE! study logo showing study site locations (Doña Ana and Rio Arriba counties) superimposed on a map of New Mexico

¡VÁLE! Study Procedures

Eligible participants were 18–29 years old with self-reported injection drug use in the past 90 days. After informed consent procedures were performed, participants underwent screening for HCV using a rapid point-of-care antibody test (anti-HCV; OraSure© Technologies; Bethlehem, PA) and a blood test for HCV ribonucleic acid (RNA) to confirm active infection status, as well as screening for human immunodeficiency virus (HIV) and hepatitis B virus. (Hepatitis B virus is sometimes abbreviated as HBV. For the purposes of this article describing work among young adult patients, we have opted against the use of the HBV acronym, since it may be confused with another virus of clinical importance in this patient group—human papillomavirus or HPV.)

All participants received counseling regarding infection prevention; referrals to local services; and resources for prevention, drug treatment, and behavioral health care. Participants were interviewed using a structured questionnaire about sociodemographic characteristics, risk exposures, injection drug use history, and selected health care utilization measures.

Participants were asked to return to the enrollment site to receive their HCV RNA results within two weeks. If HCV RNA test results were positive, indicating active HCV infection, participants underwent a one-on-one HCV education session and received a referral for HCV care. Participants were all asked to return for follow-up HCV testing and interviews every three months for one year.

FAQ Collection

¡VÁLE! study staff collected a series of FAQs about HCV which they encountered from study participants at various study visits including visits for screening, laboratory test results, follow-up, and education sessions. These FAQs were organized into four categories: risk/prevention, screening, treatment, and reinfection. Responses to each question were developed using the best available professional literature as well as clinical and public health expertise in HCV prevention and management.

Ethics Approval

The University of New Mexico Institutional Review Board reviewed and approved the study. All FAQs are presented without identifiable details about study participants.

TOOLS OF THE TRADE: HCV FAQS

Characteristics of the overall ¡VÁLE! study population are shown in Table 1. FAQs in each of the four domains are explored below. Each question, along with key elements of each response, appear in italics.

Table 1.

Characteristics of VALE study participants (n=183)

Characteristic n (%)
Sex
  Female 81 (44.3)
  Male 102 (55.7)
Race
  White/Caucasian 125 (68.3)
  Native American 13 (7.1)
  Black/African American 5 (2.7)
  Other 37 (20.2)
  Unreported 3 (1.6)
Ethnicity
  Hispanic or Latino/a 157 (85.8)
Ever tested for hepatitis C 111 (60.7)
Have health insurance 161 (88.0)
Education
  Less than high school 63 (34.4)
  High school diploma or GED 71 (38.8)
  Some college 35 (19.1)
  Associate’s degree or trade school 7 (3.8)
  Bachelor’s degree or graduate degree 3 (1.6)
  Unreported 4 (2.2)
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Risk and Prevention

Participants expressed interest in assessing their own risk of infection as well as the risk of transmitting the virus to others in their families or social circles. In a number of instances, participants had previously been misinformed about how HCV is transmitted and prevented.

How did I get HCV? Am I contagious?

HCV is spread when the blood of a person with HCV comes into contact with the blood of a person who does not have HCV. In the U.S., it is most often spread through unsafe injecting practices, such as sharing contaminated injection equipment or other contaminated materials (e.g., syringes, cottons, cookers, and water) (Hagan et al., 2010; Hahn et al., 2002; Palmateer et al., 2014) Less commonly, HCV may also be spread through sexual activity (most often in HIV-infected men who have sex with men), intranasal drug use (which may cause bleeding inside the nose), perinatal transmission from mother to fetus, non-sterile tattoo equipment, shared razors and toothbrushes, or after other accidental blood contact (“Hepatitis C FAQs for Health Professionals,” 2018).

HCV can survive outside the body on contaminated surfaces for days or weeks, if these surfaces are not properly sterilized (Doerrbecker et al., 2011; “Hepatitis C FAQs for the Public,” 2016). HCV can remain infectious in a syringe for as long as 2 months (Paintsil, He, Peters, Lindenbach, & Heimer, 2010)! Bleach disinfectants are much more effective than other household detergents/disinfectants (e.g., Dawn® dish soap, Lysol® cleaner), rubbing alcohol, or hydrogen peroxide (Binka, Paintsil, Patel, Lindenbach, & Heimer, 2015). Rinsing syringes with water, beer, or wine is not effective in killing HCV.

The safest approach is never to share materials that may be contaminated with blood—such as needles, injection equipment, toothbrushes, razors, smoking devices, and intranasal devices. Ensure that all injection equipment is kept out of the reach of other household members, especially children, and dispose of all used injection equipment in a safe, puncture-resistant container. If injecting with a member of the same household, everyone should maintain their own injection equipment. If dividing drugs, ensure that the syringe used to divide is new.

Can I spread HCV to others in my household? Can I spread HCV to my partner?

Yes. It is possible for a person with HCV to spread the disease to other people living in the same household. Infrequently, HCV may be transmitted by sharing personal items contaminated with blood (e.g., toothbrushes, razors) (“Hepatitis C FAQs for Health Professionals,” 2018). Although HCV has been detected in saliva, there is no evidence that the virus is spread or acquired through saliva or kissing (Ferreiro, Dios, & Scully, 2005).

The risk of HCV transmission to a sexual partner is relatively low compared to transmission via unsafe injection practices. However, forced or traumatic sex, exposure to genital sores or cuts, or exposure to blood during menstruation may increase the risk (Marincovich et al., 2003). Oral sexual contact may have the lowest potential for HCV transmission (Marincovich et al., 2003). Some sexual practices (e.g. unprotected anal sex, use of sex toys), the presence of other sexually transmitted infections, and the use of other non-injection drugs have also been associated with increased risk of sexually transmitted HCV in studies of HIV-infected men who have sex with men (Gambotti et al., 2005; Ghosn et al., 2004; Götz et al., 2005; Luetkemeyer et al., 2006). Thus, it is important to practice safe sex among partners to prevent sexual transmission. Partners should also be aware that despite having a sexual relationship with another individual, sharing injecting equipment – not sexual intercourse – remains the highest risk for HCV transmission no matter who your partner is, which means that even sexual partners should not share injection equipment.

Is there a vaccine for HCV?

Not yet. There is currently no vaccine to help prevent HCV, although some experimental vaccines are now being tested by researchers (Steckelberg, 2017) and may be available in the future.

Screening

¡VÁLE! participants requested information about obtaining and/or interpreting HCV-related laboratory tests. Such questions are also common among public health practitioners and clinical providers. It is important for frontline public health providers to know about HCV screening methods in order to provide accurate counseling to patients about this particular infection.

My rapid HCV screening test is positive, but my confirmatory test is negative. What does that mean? Is my HCV dormant?

The rapid HCV test is an “antibody” test. It measures your body’s response to HCV but not the amount of HCV in your blood. If you have been exposed to HCV before, your body will produce antibodies against the virus, which remain detectable even if the virus is no longer present in your blood.

The confirmatory test measures whether there is HCV in your blood by detecting the virus (HCV RNA) instead of the antibody. It tells you whether the virus is present.

In other words, the rapid test measures your body’s memory of HCV, while the confirmatory test measures whether or not the virus is still present in your body (“Hepatitis C FAQs for Health Professionals,” 2018, “Interpretation of Results of Tests for Hepatitis C Virus (HCV) Infection and Further Actions,” 2013).

Some people’s bodies clear HCV on their own (up to 25% of cases) (“Hepatitis C FAQs for Health Professionals,” 2018), ), and some others are cured of HCV after treatment. In these cases, where the virus has been cleared or cured, the confirmatory test will be negative. If your confirmatory test is negative, the virus is not “dormant;” the virus is gone.

What is a “window period?”

The window period is the time after HCV exposure that it takes the body to produce enough antibodies to show up on a rapid screening test. This period usually lasts about 2–3 months (“Hepatitis C FAQs for Health Professionals,” 2018). During the window period, it is possible to be infected without having a positive rapid screening antibody test.

How often should I be screened for HCV if I have risk factors for infection?

Yearly testing is recommended for all patients who inject drugs (AASLD/IDSA HCV Guidance Panel, 2015). More frequent screening may be considered if a new exposure is suspected, keeping in mind that the antibody screening test may not be positive until about 2–3 months after the new infection occurs (due to the window period described above).

If I had HCV while I was pregnant, should my child be tested?

Yes. Although the risk of mother-to-fetus transmission is low, your child should be tested. Treatment recommendations for children are likely to evolve and improve over the coming years, so determining your child’s HCV status will help to inform future decisions about starting treatment.

Treatment

¡VÁLE! participants expressed significant interest in HCV treatment, posing insightful questions about treatment risks and benefits as well as treatment availability for people in special circumstances (e.g., kidney problems). Often, participants reported not seeking treatment for their HCV infection due to certain behaviors or practices, such as current injection drug use.

However, HCV treatments, including those treatments available for patients who inject drugs, has changed substantially in the past 1–2 years.

Can people cure themselves?

People with new HCV infections have a small chance—up to 25%—of clearing the infection on their own (“Hepatitis C FAQs for Health Professionals,” 2018). For most people, however, the infection will not go away on its own; those people will have a chronic (long-term) infection and will need medication to cure it.

How is HCV treated? What are the side effects of treatment?

HCV treatments have changed a lot in recent years (Table 2). HCV can be treated with prescription pills, which are sometimes called direct-acting antivirals or DAAs. These pills need to be taken every day as prescribed in order to cure the infection. Most DAAs need to be taken for 2–3 months without interruption (“Hepatitis C FAQs for Health Professionals,” 2018). HCV can be cured in almost all (>90%) people who complete this treatment (AASLD/IDSA HCV Guidance Panel, 2015). The pills usually have few or no serious side effects. Up-to-date treatment guidelines can be accessed at any time at https://www.hcvguidelines.org/ (“HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C,” 2018).

Why should I be treated if I’m not sick?

Everyone with chronic HCV should be treated, except in very rare circumstances (e.g., people with an advanced terminal illness) (AASLD/IDSA HCV Guidance Panel, 2015). The new treatments are safe, effective, and well tolerated. There are potential benefits of treatment for you and those around you:
  1. Long-term benefits for you: Curing HCV before you feel sick may prevent serious complications of the infection, such as liver failure and liver cancer (AASLD/IDSA HCV Guidance Panel, 2015), in the future.
  2. Short-term benefits for you: Some people notice that they feel better immediately after treatment, even though they didn’t notice feeling sick before. This is because HCV can cause other symptoms, such as fatigue and joint pain (Cacoub et al., 2016), which may improve after treatment. In our own clinical experience, some people also report feeling happier or more hopeful after their HCV is cured.
  3. Benefits for others: Curing HCV can prevent spreading the virus to other people.

Can I receive treatment while I am still injecting drugs?

Yes. The new treatments are safe and effective for people who are still actively injecting drugs. In fact, treatment is recommended for all infected people, including people who inject drugs (AASLD/IDSA HCV Guidance Panel, 2015). Currently, access to HCV medications can vary widely from state to state. Up-to-date information about HCV treatment access in each state can be reviewed at https://stateofhepc.org/ (“Hepatitis C State of Medicaid Access,” 2018).

Can I receive treatment if I have kidney problems?

Yes. Treatment is now possible for people with kidney problems, including people who are on dialysis (“HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C,” 2018).

Can I receive treatment if I have a history of hepatitis B virus infection or HIV infection?

Yes. Treatment is possible for patients with a history of hepatitis B infection or those with HIV infection (“HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C,” 2018). A specialist with experience treating these infections should help to oversee the treatment plan.

Table 2.

Side-by-side comparison of new and old hepatitis C virus (HCV) treatments

New HCV Treatments Old HCV Treatments
Pills only Shots +/− pills
Few mild/moderate side effects Many moderate/severe side effects
Treated in 2–3 months Treated in 6–12 months
Very high chance of cure Relatively low chance of cure
Safe for people who currently inject drugs Not safe for people who currently inject drugs
Safe for people with kidney disease* Not safe for people with kidney disease
Recommended for all people with chronic HCV, with or without symptoms** Recommended for specific subgroups of people with chronic HCV
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*

At least one treatment regimen is available for people with kidney disease, including people on dialysis.

**

Treatment is not indicated for people whose life expectancy does not exceed 6 months due to other illnesses.

Reinfection

Reinfection is of utmost concern for individuals who inject drugs. ¡VÁLE! study participants consistently inquired about whether HCV treatment conferred immunity and, if not, how to avoid reinfection during and after treatment.

What is reinfection?

Reinfection is a new infection with HCV after a previous HCV infection was cleared spontaneously or cured with treatment (Blackard, 2012). Patients who have cleared or cured the infection once are not immune from getting infected again.

There are 7 major types of HCV and over 60 subtypes found in different places throughout the world (Smith et al., 2014). Infection with multiple types or subtypes—at one time or at different times—is possible. Thus, antibodies formed after infection with one subtype do not provide future immunity against HCV.

Can I be re-infected during or after treatment?

Yes, you can be re-infected during or after treatment. However, diagnosis of reinfection can be tricky. It’s important to know that your rapid screening test may stay positive for at least 10 years, even after HCV treatment and cure (Toyoda et al., 2005). Thus, a positive screening antibody test does not mean that you have been re-infected. If reinfection occurs, this can only be determined with the confirmatory test that detects the presence of virus in your blood (see “Screening” section above).

What can I do to keep from being re-infected or from re-infecting someone else?

It is important for everyone—including patients who are currently being treated for HCV or who have been treated for HCV in the past—to avoid potential exposures to the virus by following the recommendations in the “Risk and Prevention” section above.

Highlights and Resources for Frontline Providers

Frontline providers and health educators should be prepared to convey up-to-date information about HCV risk/prevention, screening, treatment, and reinfection to the communities they serve. The FAQs above may help providers to anticipate and respond to questions from young adults in their communities. Key points to remember include:

  1. Avoiding potential blood-to-blood exposures is the hallmark of preventing HCV infection and reinfection. Counseling should be reinforced at every possible opportunity (e.g., screening, treatment, or post-treatment evaluations; visits to syringe services, sexually transmitted infection clinics, behavioral health support groups, or other public health interactions).

    Related Resources for Frontline Providers: The FAQs provided here, along with those offered by national, state, or local public health entities may aid with the counseling process (“Hepatitis C FAQs for Health Professionals,” 2018, “Hepatitis C FAQs for the Public,” 2016).

  2. HCV is now a curable condition, and treatment is recommended for patients who inject drugs. Treatments have become much more effective and much easier to tolerate compared to therapies used in years past (Table 2). Currently, however, access to these medications varies from state to state.

    Related Resources for Frontline Providers: The contrast between new and old treatments shown in Table 2 may help to ease patient concerns about pursuing treatment. Frontline providers can directly review treatment guidelines and state-specific treatment access information on readily available, regularly updated websites (“HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C,” 2018, “Hepatitis C State of Medicaid Access,” 2018). Providers are also encouraged to identify screening and treatment referral sites in their areas of practice to assist with patient counseling.

Although our study did not encounter specific questions about the use of herbs, supplements, or medical cannabis, such questions may be encountered by other frontline providers and clinicians. Providers may find the National Institutes of Health LiverTox database (https://livertox.nih.gov/) helpful to support discussions about the impacts of herbs, supplements, and medications on liver health.

Conclusions

Young adults who inject drugs and reside in rural areas of the U.S. are at high risk for HCV infection. The combination of operative prevention programs, including syringe services with effective counseling strategies employed by frontline providers, and access to safe, effective treatment regimens for affected patients could dramatically impact this epidemic. As the questions posed in this study show, young adults often have important and insightful questions about HCV. Frontline providers should be prepared with equally important and insightful responses.

ACKNOWLEDGMENTS/FUNDING:

This study was supported by the Centers for Disease Control and Prevention (award number 5U18PS004568–03; PI: Page, K.). Additional funding for personnel and study supplies was provided by Gilead Sciences, Inc. Funding agencies did not participate in treatment decisions or manuscript preparation. The study also received programmatic and logistical support from the University of New Mexico (UNM) Clinical and Translational Sciences Center (1 ULTR001449; PI: Larson R.), Project ECHO®, Creative Testing Solutions©, the New Mexico Department of Health, the Santa Fe Mountain Center, and the Molecular Epidemiology Laboratory in the UNM Health Sciences Center, Division of Epidemiology, Biostatistics, and Preventive Medicine.

Author Biographies:

Lauren L. Knight, MD (llknight@salud.unm.edu) is the Research Coordinator for the ¡VÁLE! study in the Division of Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Katherine Wagner, MIPH (KWagner@salud.unm.edu) is a Clinical Research Associate and project director for the ¡VÁLE! study in the Division of Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Yuridia Leyva, MS (YLeyva@salud.unm.edu) is a Research Scientist and biostatistician for the ¡VÁLE! study in the Division of Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Veronica R. Bruce, PhD (VRGonzales@salud.unm.edu) is a Postdoctoral Fellow in the Division of Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Kirsten A.M. White, PhD (KiWhite@salud.unm.edu) is a Research Scientist in the Division of Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Yvonne S. Talamantes, BS (ytala2@salud.unm.edu) is a Research Scientist in the Behavioral Measurement and Population Science Shared Resource at the University of New Mexico Comprehensive Cancer Center in Albuquerque, New Mexico.

Brittany Price, BA (bnprice@salud.unm.edu) is a Community Research Specialist in the Community Engagement and Research Core at the Clinical and Translational Science Center at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico and assists in the field for the ¡VÁLE! study.

Kimberly Page, PhD, MPH, MS (pagek@salud.unm.edu) is a Professor in the Division of Epidemiology, Biostatistics and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

Martha L. Carvour, MD, PhD (MCarvour@salud.unm.edu) is a Fellow in the Divisions of Infectious Diseases and Epidemiology, Biostatistics, and Preventive Medicine in the Department of Internal Medicine at the University of New Mexico Health Sciences Center in Albuquerque, New Mexico.

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