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HCV Elimination- the "Social Approach" for PWID - transformative potential of DAAs treatment for HCV among people who inject drugs
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HCV Elimination - we are far from having an infrastructure that leads to HCV elimination. Here is part of the solution. We need routine & I think mandated screening for all. Screening is very underutilized in the USA, it is NOT being implemented, without full fledged large-scale commitment to screening we can't eliminate HCV. We need culturally apporopriate screening for all affected groups including incarcerated and vulnerable marginalized groups like drug users and their partners, immigrant, homeless. We need full public awareness programs that appeal to people from all walks of life including injection drug users & their community; that tries to destigmatize HCV. We need adequate & expansion of syringe exchange programs & harm reduction programs, and that provide complete care & services. We need HCV treating clinicians that are willing and able to treat injection drug users. There is a big lack of adequate numbers of such clinicians. Telehealth can & should be part of the solution. We need to better utilize & expand use of mobile vans for telehealth for HCV treatment, screening & services. We need to expand HCV screening & treatment and colocate with Methadone Programs and with Opioid Use Disorder Treatment Programs. We need a national network of infrastructure that provides all this. We need to develop rapid (15 minute) point of care testing that can be reliable & accurate. The CDC gets now a mere $39 for viral hepatitis which includes all hepatitis. The CDC estimates they need $400 mill a year for 6 years to eliminate HCV. A Ryan White Care Act -type program for HCV could be a short-term project time limited to 6-7 years. We need an infrastructure & the necessary funding & commitment. If we had a cure for HIV or diabetes or cancer would we NOT provide the infrastructure to offer the cure to all? I do not think so. Its the stigma of drug users associated with HCV that prevents the commitment. HCV is curable with short term treatment by daily pills with 95% cure rates, a great medical milestone. Jules
We employed "life projects" as a conceptual framework to examine the social incentives of PWID being treated for HCV.
- A social approach to HCV treatment access is necessary
- address social stigma
- provide complete support services in caring environment: medicine should be accompanied by a clinical and social environment that accounts for the whole individual.
- Understanding the incentives that propel PWID to complete HCV treatment could help to enhance treatment uptake and adherence through dedicated programs that address current barriers to care.
- Many participants described the supportive nature of the clinical settings where the study took place as critical for redefining the self. Support included resources offered through clinics' case management to secure housing, food, and employment.
Even after considering these limitations, our study advances the literature on the social experiences of PWID undergoing DAA treatment. The concept of life projects framed our analysis of individual and social incentives for engaging in DAA treatment. Self-improvement, strengthening of relationships, abstinence, and harm reduction emerged as important motivators for completing HCV treatment. Understanding these incentives could help to enhance treatment uptake and adherence through dedicated programs that address current barriers to care faced by PWID. Supporting life projects towards successful treatment of PWID carries intrinsic value for the individual. This approach also holds po-tential for proactively engaging PWID in treatment programs towards achievement of the public health goal of treatment as prevention. In order to realize the potential benefits of treatment for both the in-dividual and greater society, however, we will first need unencumbered universal access to HCV treatment.
Redefining the self
Social redemption was a key life project motivating all participants in our study to complete treatment. Many participants described ridding themselves of a stigmatized virus as part of a complete transition away from a former self.
- we found that treatment served both as motivation for and reinforcement of concurrent life projects. Relief from social stigma and redemption from a discredited former self emerged as important life projects for participants from both the OAT and NSP programs. This supports previous findings citing re-duced social stigma as a result of HCV treatment.
Due to significant psychosocial needs, PWID continue to benefit from support beyond dispensing of medication and occasional monitoring with newer DAA medications (Whiteley, Whittaker, Elliott, & Cunningham-Burley, 2016). Our study supports that, rather than viewing the benefits of a pill-per-day regimen in isolation, the medicine should be accompanied by a clinical and social environment that accounts for the whole individual.
A life projects approach will help to identify where support is needed, and facilitate referrals to ancillary services such as peer support, mental health care, housing, or OAT, which our participants found crucial to personal transformation. Participants in our study remained treatment-adherent and voiced plans for ongoing self-improvement after cure that would serve to return them from the margins of society.
Granted access, destigmatization in the eyes of self, family, community, and society formed an important life project in our study, and may fuel ongoing motivation to remain virus free.
Life projects and HCV treatment
Redefining the self
Redefining the self, strengthening relationships, abstinence from substance use, and harm reduction strategies were intertwined with other broader life goals, including stable housing, employment security, and healthy living (e.g., nutrition). Participants saw HCV treatment as a critical moment in their lives, shaping how they viewed health, social relationships, and how they reflected on their history of substance use. Those who currently maintained abstinence as a life project had used harm reduction stra-tegies in the past, and vice versa. For clinical practice oriented towards vulnerable PWID with a history of substance use, our study shows that both life projects are valuable in preventing HCV reinfection.
With regards to HCV treatment, by capitalizing on personal motivations and em-powering PWID to prevent reinfection after treatment we can best en-sure that treated individuals remain virus free regardless of current or future substance use.
This study advances the existing literature on the transformative potential of HCV treatment among PWID, explores how these transformations may affect treatment success, and discusses i-plications for decisions around whether and when to treat PWID.
Barriers to treatment access among PWID include a dearth of programs tailored to the needs and life experiences of PWID, state-level restrictions on access for PWID (NVHR, 2017), and requirements that treatment be administered in a sub-specialty setting
Stigma associated with chronic HCV constitutes an important bar-rier to care. This stigma plays out during interactions with the health care system and providers, or as internalized stigma that affects whe-ther HCV-positive individuals seek treatment.
A social approach to HCV treatment access is necessary to address social and structural barriers, such as stigma and discrimination. In this paper, we employ "life projects" as a conceptual framework (Kondo, 1990; Wikan, 1995) that situates the therapeutic experience within broader life goals, survival strategies, and cultural practices that matter to those grappling with both HCV infection and drug use.
Multiple studies have reported transformations in the lives of those who have undergone HCV treatment, which include improved self-ef-ficacy and a return to "normalcy". These studies have focused primarily on positive individual-level behaviour change as accompanying treatment, including increased self-care and reduction in drug use.
In one pro-spective study, Alavi et al. (2015) note a significant reduction in sharing of drug paraphernalia between participants pre- and post-HCV treatment, highlighting that treatment provides an important opportunity to educate participants on strategies to reduce their future risk of re-infection. Harris (2017), observing the shifting public discourse around HCV treatment prioritization with the advent of DAAs, notes the vast social benefits that can accompany treatment.
In this article, we use the concept of life projects to identify the social experiences and motivations of PWID being treated for HCV within two healthcare for the homeless clinics - one group receiving opioid agonist therapy (OAT), and another group frequenting a needle and syringe exchange program (NSP).
In-depth interviews were conducted between August 2017 and April 2018 with a subset of the participants of a pilot clinical trial testing the effective delivery of DAA treatment to PWID. The clinical trial enrolled 50 non-cirrhotic patients recruited from two healthcare for the home-less clinics. Both sites are multi-disciplinary primary care clinics that employ a patient-centred medical home model.
Of those recruited from the NSP, 100% reported having used substances in the past week. Table 1 describes the demographic characteristics of the total clinical trial sample and the qualitative study subsample.
Social redemption was a key life project motivating all participants in our study to complete treatment. Many participants described ridding themselves of a stigmatized virus as part of a complete transition away from a former self. The journey towards a healthier self-concept included goals around improving diet, exercise, and engagement in leisure activities; goals previously perceived out of reach were now deemed possible. One 34-year-old female on OAT reflected on her healthy living goals:
[My concept of health] changed all throughout treatment. Like be-fore I ate a lot of unhealthy food. I wouldn't really take care of my body as good. I also just made my first counselling appointment for my mental health, and I'm trying to get in for a psych eval, and so I think I changed a lot. I don't know why it's really strange it just happened to be the timing. I feel like okay now I'm getting my health going, and I think it motivated me to want to do more especially when you guys said that the first time my blood work came back, and the virus it wasn't detectable. It just motivated me to become a way healthier person. (> 12 months since last use).
Many participants described the supportive nature of the clinical settings where the study took place as critical for redefining the self. Support included resources offered through clinics' case management to secure housing, food, and employment. Participants like one 45-year-old female reported feeling "shame" due to homelessness, being "not worthy of taking care" of themselves, and "like I'm bothering people" (NSP client, < 1 week since last use).
In addition, participants reported that patient-centred services offered during the study promoted the development of a "caring" provider-client relationship, as evident in the following narratives.
Overall, participants reported perceiving greater self-worth and ability to care for themselves as a result of completing DAA treatment. The material resources and attention given to the participants during the trial seemed to reinforce the development of a positive self-concept.
HCV treatment was often a life project pursued together by partners and their significant others.
In many cases, treatment achieved the life project of fortifying ex-isting relationships. Many participants cited concern for family or sig-nificant others as motivating them to complete treatment.
As represented by these narratives, the life project of maintaining romantic and family relationships was a prominent finding that emerged organically from the data.
Most of our sample (21 of 27 participants) pursued abstinence from substance use as a life project, which mutually reinforced their desire to complete HCV treatment. In our cohort of 27, 16 were actively engaged in a substance use treatment program and on OAT.
Participants as-cribed a range of meanings to abstaining from substance use as a life project. Some held "sobriety" and "staying clean" as goals, with support from 12-step programs, sponsors (e.g., peer mentors in 12-step pro-grams), and home groups where they developed personal relationships with others in the programs.
Fifteen of the 16 participants on OAT reported that hepatitis C treatment reinforced their intention to abstain from substance use, with the one remaining participant stating that their resolve to "stay clean" was already strong with or without being treated for HCV.
harm reduction strategies help them to avoid withdrawal and protect themselves from future reinfec-tion. Harm reduction stands as an important life project towards pro-tecting their long-term health.
This exemplifies how OAT can be interchangeably used as harm reduction to avoid reinfection by helping to reduce risk behaviour, or to support abstinence as previously discussed.
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Life projects: the transformative potential of direct-acting antiviral treatment for hepatitis C among people who inject drugs
Intl Jnl of Drug Policy 2019 Beth E. Williamsa,⁎, Devynne Nelonsb, Andrew Seamanc, Martyna Witkowskaa, Wren Ronand, Haven Wheelockd, Atif Zamanc, Jonathan Garcia
Abstract
Background and objectives
People who inject drugs (PWID) are disproportionately affected by chronic hepatitis C (HCV) in high-income countries. The advent of direct-acting antivirals (DAAs) makes treatment of this underserved population more possible than ever. The dearth of programs adapted to the needs of PWID and stigma associated with drug use and chronic HCV pose significant barriers to the effective uptake of treatment among this population. We employed "life projects" as a conceptual framework to examine the social incentives of PWID being treated for HCV. This study advances the existing literature on the transformative potential of HCV treatment among PWID, explores how these transformations may affect treatment success, and discusses implications for decisions around whether and when to treat PWID.
Methods
We conducted in-depth interviews with participants of a pilot clinical trial testing the effective delivery of DAA treatment to PWID within two healthcare for the homeless clinic settings - one group receiving opioid agonist therapy (OAT) and another group frequenting a needle and syringe exchange program (NSP). A purposive sample of 27 participants was selected based on place of care. Interviews were transcribed, coded, and analysed for patterns using a priori domains and emergent themes.
Results
Participants in both treatment groups described significant life projects that motivated them to complete HCV treatment. These projects included social redemption, strengthening of relationships, pursuit of abstinence from substance use, and harm reduction. These themes were consistent between treatment groups, though more participants in the syringe exchange group relied on harm reduction than on pursuing abstinence to prevent reinfection after achieving virologic cure.
Conclusion
Understanding the incentives that propel PWID to complete HCV treatment could help to enhance treatment uptake and adherence through dedicated programs that address current barriers to care.
Background
In high-income countries, chronic hepatitis C (HCV) disproportionately affects people who inject drugs (PWID). Incident hepatitis C infection is on the rise in the U.S. with an estimated 2967 new cases annually, or approximately 1 per 100,000 people (Centers for Disease Control & Prevention, 2018). Injection drug use (IDU) is the most prominent means of HCV transmission, with 73% of new infections associated with IDU (MMWR, 2015; Zibbell et al., 2018). In Oregon, 1.6% of the adult population is estimated to be HCV RNA positive, the fourth highest rate in the nation (Rosenberg et al., 2018). From 2010-2015, the proportion of newly reported HCV cases in Oregonians under the age of 35 increased by 60%, which likely represents new infections due to risk behaviours including IDU (OHA, 2017). The recent adoption of the highly efficacious and well-tolerated direct-acting antivirals (DAAs) presents an opportunity to increase treatment rollout among this underserved population.
Historically, treating PWID has been subject for debate. Concerns held by medical providers treating PWID with older interferon-based regimens include questions of adherence, efficacy, and risk of reinfection (Bruggmann & Grebely, 2015). However, modelling based even on inferior cure-rates of pre-DAA regimens demonstrated treatment of PWID to be cost-effective (Martin et al., 2016). DAA regimens are highly efficacious among PWID, but treatment uptake is lacking (Bajis et al., 2017; Bruggmann & Grebely, 2015; Grebely & Dore, 2014). Lack of treatment among this group is in part impacted by intentional or unintentional treatment prioritization that often excludes PWID (Alavi et al., 2014; Grebely, Dalgard et al., 2017; Grebely, Hajarizadeh, & Dore, 2017). Barriers to treatment access among PWID include a dearth of programs tailored to the needs and life experiences of PWID, state-level restrictions on access for PWID (NVHR, 2017), and requirements that treatment be administered in a sub-specialty setting (Bruggmann & Litwin, 2013).
Stigma associated with chronic HCV constitutes an important barrier to care. This stigma plays out during interactions with the health care system and providers, or as internalized stigma that affects whether HCV-positive individuals seek treatment (Day, Ross, & Dolan, 2003; Evon, Golin, Fried, & Keefe, 2013; Fraser & Treloar, 2006; Harris & Rhodes, 2013; Swan et al., 2010; Treloar, Rance, & Backmund, 2013). These barriers persist despite modelling showing that treatment scale-up among PWID could greatly reduce long-term HCV prevalence and transmission rates (Martin et al., 2013). To overcome structural barriers, population-specific interventions must be employed at every stage of the HCV treatment cascade (Meyer et al., 2015).
A social approach to HCV treatment access is necessary to address social and structural barriers, such as stigma and discrimination. In this paper, we employ "life projects" as a conceptual framework (Kondo, 1990; Wikan, 1995) that situates the therapeutic experience within broader life goals, survival strategies, and cultural practices that matter to those grappling with both HCV infection and drug use. Life projects lay out a "rubric within which to explore the culturally variable and socially‐structured nature of what people want, and what others expect them to achieve, from their lives" (Garcia, Colson, Parker, & Hirsch, 2015: p. 245). This framework has been used to understand alcohol and drug use in the context of adolescent rites of passage (Beccaria & Sande, 2003), short and long-term incentives for HIV treatment adherence (Gore-Felton et al., 2005; Smith & Mbakwem, 2007, 2010), and uptake of pre-exposure prophylaxis (Garcia et al., 2015) in a number of global settings.
Multiple studies have reported transformations in the lives of those who have undergone HCV treatment, which include improved self-efficacy and a return to "normalcy" (Batchelder, Peyser, Nahvi, Arnsten, & Litwin, 2015; Clark & Gifford, 2014; Harris, 2017). These studies have focused primarily on positive individual-level behaviour change as accompanying treatment, including increased self-care and reduction in drug use (Artenie et al., 2017; Batchelder et al., 2015). In one prospective study, Alavi et al. (2015) note a significant reduction in sharing of drug paraphernalia between participants pre- and post-HCV treatment, highlighting that treatment provides an important opportunity to educate participants on strategies to reduce their future risk of reinfection. Harris (2017), observing the shifting public discourse around HCV treatment prioritization with the advent of DAAs, notes the vast social benefits that can accompany treatment.
Nonetheless, she also cautions that the current optimism surrounding treatment is not always realized: that for some, "mental scarring" (p.165) and a sense of disorientation can follow viral clearance. Decisions about where to allocate scarce treatment resources must consider these significant social benefits to patients alongside individual, physical, and financial considerations that determine treatment criteria. Using life projects as an analytical framework allows us to see how PWID's social experiences are shaped by DAA treatment for HCV, what motivates them to achieve and maintain individual viral clearance, and where ancillary services may provide important support.
In this article, we use the concept of life projects to identify the social experiences and motivations of PWID being treated for HCV within two healthcare for the homeless clinics - one group receiving opioid agonist therapy (OAT), and another group frequenting a needle and syringe exchange program (NSP). Drawing on qualitative interviews, we seek to advance the existing literature on the transformative potential of DAA treatment for HCV among PWID, explore how social transformations may affect treatment success, and discuss implications for decisions around whether and when to treat PWID. Advancing our understanding of these social transformations as part of PWID's life projects will inform treatment programs and mitigate social vulnerability to reinfection.
Methods
In-depth interviews were conducted between August 2017 and April 2018 with a subset of the participants of a pilot clinical trial testing the effective delivery of DAA treatment to PWID. The clinical trial enrolled 50 non-cirrhotic patients recruited from two healthcare for the homeless clinics. Both sites are multi-disciplinary primary care clinics that employ a patient-centred medical home model. Site 1 serves over 4900 homeless and low-income adults living with a broad range of social, behavioural, and medical conditions; it has an OAT program that offers buprenorphine in conjunction with mandatory group and individual counselling sessions. Site 2 provides care in both a fixed location and from outreach medical vans throughout the metropolitan region. This site is home to the United States' first publicly funded NSP, which serves over 4500 unique clients annually. Trial participants were followed by a care team comprised of a medical provider and pharmacist at each care site within their own medical home environment. The inclusion criteria for participating in the clinical trial were: 1) Genotype 1b and genotype 1a without baseline NS5A resistance or Genotype 4; 2) APRI Score <0.7 or Fibrosure or Fibroscan score of F2 or less, plus no clinical or laboratory evidence of cirrhosis; 3) Readiness for treatment based on ability to make >2/3 sequential office visits; 4) Patients' ability to have decision-making capacity, be capable of consenting, and not be displaying evidence of overt intoxication.
A purposive sample (Patton, 2002) of 27 participants was selected from the 50 clinical trial participants based on treatment site with an effort to enrol an equal number of participants from the OAT (n = 16) and NSP (n = 11) programs. We sampled from these two sites with the strategic goal of engaging participants with the intention of abstaining from substance use and those reporting substance use in the past week. As noted in Table 1, of the qualitative study participants, 50% (n = 8) participants recruited from the OAT program had abstained from substance use for at least 12 months, 31.3% (n = 5) had used in the last 12 months, and 18.8% (n = 3) had used substances in the past week. Of those recruited from the NSP, 100% reported having used substances in the past week. Table 1 describes the demographic characteristics of the total clinical trial sample and the qualitative study subsample.
Interviewers invited participants to reflect on their experiences during DAA treatment. Participants were invited to participate during the intake appointment, after the initial screening process for the clinical trial. The consent form was provided prior to the appointment so participants had time to read over it and highlight any questions or concerns. Patients with low self-reported reading literacy had the consent form read to them with a teach-back to confirm understanding. Participants who had indicated consent to participate in an interview at enrolment were contacted at week 10 of their 12-week treatment course. Interviews were offered as participants progressed through treatment and recruitment was completed when thematic data saturation was reached (i.e., no new themes were emerging from conducting additional interviews) within each site-specific recruitment category. The face-to-face interviews lasted 45-60 min each. Participants received a $25 gift card.
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