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. Author manuscript; available in PMC: 2023 Apr 1.
Published in final edited form as: Int J Drug Policy. 2022 Feb 5;102:103600. doi: 10.1016/j.drugpo.2022.103600

Stigma and ART initiation among people with HIV and a lifetime history of illicit drug use in Saint-Petersburg, Russia – a prospective cohort analysis

Marina Vetrova a,§, Sara Lodi b, Lindsey Rateau b, Gregory Patts b, Elena Blokhina a, Vladimir Palatkin a, Tatiana Yaroslavtseva a, Olga Toussova a, Natalia Bushara a, Sally Bendiks c, Natalia Gnatienko c, Evgeny Krupitsky a,d, Dmitry Lioznov a,e, Jeffrey H Samet b,c,f, Karsten Lunze b,f
PMCID: PMC8960362  NIHMSID: NIHMS1778034  PMID: 35134598

Abstract

Background

HIV-positive people who inject drugs (PWID) are stigmatized and face more challenges in accessing ART. The natural course of stigma and its role on ART initiation in this population is unclear. We examined 1] whether HIV stigma changes over time and 2] whether HIV and substance use stigma are associated with ART initiation in a prospective cohort of HIV-positive PWID in St. Petersburg, Russia.

Methods

We used data from 165 HIV-positive PWID who were ART-naïve at enrollment andgeneralized estimating equations to assess changes in HIV stigma between baseline, 12- and 24-month study visits. Logistic regression estimated associations of HIV stigma and substance use stigma with ART initiation. All models were adjusted for gender, age, CD4 count, duration of HIV diagnosis, recent (past 30-day) drug use and depressive symptoms.

Results

Participants characteristics were the following: median age of 34 (Q1; Q3: 30; 37) years; 30% female; 28% with CD4 count <350; 44% reported recent drug use. During the study period, 31% initiated ART and the median time between HIV diagnosis and ART initiation was 8.5 years (Q1; Q3: 4.68; 13.61). HIV stigma scores decreased yearly by 0.57 (95% CI −1.36, 0.22). More than half (27/47 [57.4%]) of participants who were eligible for ART initiation per local ART guidelines did not initiate therapy. Total HIV stigma and substance use stigma scores were not associated with ART initiation (AOR 0.99, 95%CI 0.94–1.04; AOR 1.01, 95%CI 0.96–1.05, respectively).

Conclusion

In this Russian cohort of HIV-positive, ART-naïve PWID, stigma did not change over time and was not associated with ART initiation. Addressing stigma alone is unlikely to increase ART initiation rates in this population. Reducing further existing structural barriers, e.g., by promoting equal access to ART and the value of substance-use treatment for ART treatment success should complement stigma-reduction approaches.

Keywords: Stigma, Antiretroviral therapy, Linkage to care, People who inject drugs, Substance Use Disorders, Russia

Introduction

In 2020, the Joint United Nations Programme on HIV/AIDS (UNIADS) estimated that globally, 37.7 million people live with HIV, and 1.5 million new HIV cases occur each year (UNAIDS, 2020). Over the past two decades (2000–2017), Central and Eastern Europe, and Central Asia saw the highest annualized rate of increase in new HIV infections at 13.2% (Frank et al., 2019). The continued growth in HIV incidence and mortality in Russia is largely attributable to the lack of prevention and treatment measures targeted to HIV key populations. These limitations include the unavailability of opioid agonist therapy for opioid use disorder, minimal harm reduction programs (Wirtz et al., 2016) and the absence of pre-exposure prophylaxis for key populations like men who have sex with men and people who inject drugs (PWID) (Zelenev, 2018).

Early initiation of antiretroviral therapy (ART) has multiple benefits for public and individual health. However, coverage of ART is low in Russia. A previous UNAIDS Global report on the AIDS epidemic listed Russia among the countries with lowest ART coverage (UNAIDS, 2010). Despite international (WHO, 2017) and national recommendations (“Clinical Guidelines ‘HIV Infection in Adults,’” 2017) to treat all HIV-positive individuals regardless of clinical parameter, only 35% of all adults and children living with HIV in Russia currently receive ART (Ministry of Health of RF, 2017; UNAIDS, 2017). Organization-level barriers to ART include a separately organized HIV care system and underfunding for treatment (Clark, 2016; Frank et al., 2019). The estimated number of people eligible for ART according guidelines was 820,000 in 2013 (UNAIDS, 2013). However, in 2015 ART was available only for 160,000 – 180,000 PWLH (Babikhina et al., 2016). Recent data documented that in 2020 ART was available for 505,190 of the more than one million PWLH (Babikhina et al., 2020). In sum, the data on availability of ART show a deficit of ART medication for PWLH in Russia, which might affect provider decisions on ART prescription and therefore create inequality in ART access for stigmatized groups such as PWID. Previous research reported poor HIV treatment outcomes among people who use substances, including alcohol and drugs. Studies in St. Petersburg have shown that PWID with HIV have difficulty receiving treatment at HIV clinics (Heimer et al., 2017) and are less likely to utilize HIV care (Amirkhanian et al., 2018). Data from national research conducted in 2017 suggested that coverage of ART among HIV-positive PWID in Russia is insufficient and varied in different regions, for example, 42% in Saint-Petersburg and 13% in Krasnoyarsk (Plavinsky et al., 2017). The low proportion of PWID on ART in Russia might be explained by the fact that based on recent national clinical guidelines, ART initiation is recommended to be delayed for individuals with severe drug use disorders (Clinical Guidelines ‘HIV Infection in Adults’, 2017) due to the assumption of a lack of adherence in this population (WHO Regional Office for Europe, 2006). However, a cross-sectional study conducted in Russia found that about 40% of HIV-positive PWID who received ART remained in HIV care at 6 months (Amirkhanian et al., 2011). Previous qualitative studies noted that PWID face system-level challenges to HIV care including a fragmented healthcare system; involuntary registration of substance use disorders, resulting in restriction of personal rights; and a requirement of sobriety to be eligible for ART initiation (Bobrova et al., 2007; Sarang et al., 2013b). Pursuant to an order issued in 1988 by the then USSR Ministry of Health, Russia’s substance use registry has operated without voluntary informed consent. In practice, even after the order was amended in 2015 to require informed consent, people with substance use disorders are often involuntarily registered in addiction clinics (Golichenko & Chu, 2018). As in many countries, illicit drug use is criminalized in Russia. HIV-positive PWID are highly stigmatized and experience discrimination in healthcare settings, which leads to non-disclosure of their HIV status (Lunze et al., 2013) and presents a barrier to HIV testing, prevention and treatment services (Calabrese et al., 2016). Stigma related to substance use may be another reason for low ART rates in this population. In our previous observational study among HIV-positive PWID, we found that substance use-related stigma and HIV stigma to be related with decreased access to care and outpatient care utilization (Vetrova et al., 2021). In sum, HIV-positive PWID in Russia are particularly susceptible to treatment inequalities due to various personal, structural, and social barriers to ART initiation.

Prior work using cross-sectional designs to analyze the association between HIV stigma and ART initiation may not have accounted for time-varying stigma effects. Previous research in South Africa showed that experiencing internalized HIV stigma soon after HIV diagnosis might result in care avoidance as a coping strategy and therefore play a negative role in ART initiation (Earnshaw et al., 2018). Among Canadian women, internalized but not perceived HIV-related stigma was associated with lower likelihood of ART start, with a mediating effect of depression (Logie et al., 2018). Acceptance of HIV diagnosis might be a “protracted and circuitous process” and HIV-related stigma considered a barrier to acceptance (Kutnick et al., 2017). However, it is not clear whether internalized HIV stigma scores change over time among HIV-positive people, especially in PWID in the absence of anti-stigma interventions and whether any coping mechanisms mediates these changes. The relationship between stigma and ART initiation is presumably bidirectional. In Uganda, internalized HIV stigma declined after ART initiation among people living with HIV (Tsai et al., 2013). Analyzing HIV stigma scores longitudinally may help answer whether HIV stigma changes over time, and whether these changes are related to ART initiation. Furthermore, while PWID with HIV face various system-level challenges (Amirkhanian et al., 2018; Bobrova et al., 2007; Heimer et al., 2017; Kiriazova et al., 2017; Sarang et al., 2013a, 2013b) and avoid HIV care (Brewer et al., 2007; Giordano et al., 2005; Samet et al., 1998; Tobias et al., 2007). Utilization of addiction treatment facilitated earlier entry into HIV care (Gardner et al., 2016), however stigma related to substance use associated with low utilization of addiction services (Vetrova et al., 2021). Few studies have investigated the role of HIV- and substance use - related stigma manifestations on ART initiation among this high-risk population.

This study had two aims: (1) to evaluate HIV stigma changes over a 2-year period in the absence of any anti-stigma interventions; and (2) to test whether HIV and substance use stigma scores are associated with ART initiation. We hypothesized: 1) that in the absence of any anti-stigma interventions, HIV stigma scores decline over time due to adaptive coping processing, acceptance and disclosure of HIV diagnosis over time; and 2) that lower HIV and substance use stigma scores are associated with higher odds of ART initiation.

Methods

Procedure and Participants

We performed a longitudinal analysis of data collected between November 2012 and June 2015 in St. Petersburg from the Russia Alcohol Research Collaboration on HIV/AIDS (Russia ARCH) cohort. The Russia ARCH study was expanded by an RCT assessing zinc supplementation (NCT01934803) in HIV-positive people with heavy alcohol use (Gnatienko et al., 2018). Participants in Russia ARCH cohort (n=351, nested ZINC trial n=254) were HIV-positive and ART-naïve at enrollment (So-Armah et al., 2019). Recruitment strategies included referrals from governmental and non-governmental organizations, who provide medical and social care for people living with HIV or substance use disorders; and through snowball sampling (via current study participants). Inclusion criteria for the cohort were the following: (1) age 18–70 years old; (2) Russian speaking; (3) willing to provide two contacts to assist with follow-up; (4) stable address within 100 km of St. Petersburg; (5) phone (home or mobile) possession; (6) documented HIV infection; (7) documented ART-naïve status at baseline and (8) for ZINC participants only: past month risky drinking based on NIAAA criteria (NIAAA Alcohol & Your Health website, 2020). Participants with cognitive impairment affecting their ability to provide informed consent were excluded. In the current analysis, we included data from participants who reported a lifetime (i.e., a current or past) history of injection drug use and who completed HIV Stigma and substance use stigma questionnaires during a study visit prior to ART initiation. Lifetime history of injection drug use was assessed via a modified Risk Behavior Survey (RBS) (Needle et al., 1995; Weatherby et al., 1994). We included only participants who had longitudinal data for the outcomes of interest. Specifically, we excluded those in the Russia ARCH with the following characteristics: [1] no visits during 24 months of study follow-up [n=51]; [2] no baseline CD4 count [n=104]; [3] HIV-negative at baseline as confirmed by rapid HIV test [n=9]; [4] did not meet inclusion criteria of lifetime substance use at baseline [n=33], or [5] did not complete the HIV Stigma Scale at baseline [n=15]). Excluded participants did not differ in demographics from those included in this analysis (Supplement Table 1). In the analyses for aims 1 and 2, the total sample size was 165. The exclusion criteria numbers are not mutually exclusive. In the analysis for aim 3, we also excluded those who did not complete the substance use stigma questionnaire (n=33) or completed it after ART initiation (n=23), yielding a sample size of n=109.

All participants provided written informed consent to participate in the study, which was conducted in a private space at a research center at Pavlov University. All participants received 600 – 1,500 Russian Rubles in cash (the equivalent of about US $14–35 at the time of study), depending on the procedures at each visit, as compensation for their time and transportation costs. The Institutional Review Boards of Boston University Medical Campus and First Pavlov State Medical University of St. Petersburg approved this study.

Main independent variables, outcomes and covariates

The main exposure variable was change in HIV stigma since enrollment at baseline, 12- and 24-month study visits. HIV stigma was assessed via the self-administered abbreviated 10 question Berger HIV Stigma Scale (Berger et al., 2001; Wright et al., 2007), a scale consisting of four subscales for personalized HIV stigma: disclosure concerns, negative self-image, concerns with public attitudes toward HIV-positive people, and one additional item “I worry that the people I drink or do drugs with will act negatively toward me if I tell them that I am HIV-positive”, rated on a four-point Likert-type scale (i.e. 1 = “strongly disagree” and 4 = “strongly agree”). We calculated total HIV Stigma scores as the sum of each participant’s response to all questions, ranging from 11 to 44.

We measured substance use stigma using the self-administered 12-item abbreviated Substance Abuse Self-Stigma Scale (SASSS) once at any study visit (baseline or any follow up visit during 24-month study period) (Luoma et al., 2010, 2013). We validated these instruments in this population and found them to be internally valid. The SASSS scale comprised of 12 items to measure lifetime prevalence of stigmatizing events, with four subscales for self-devaluation (response options ranged from 1 = “never or almost never” to 5 = “very often”), fear of enacted stigma (response options ranged from 1 = “few people (0–20%)” to 5 = “almost everyone (80–100%)”), stigma avoidance (response options ranged from 1 = “never or almost never true” to 5 = “always or almost always true”). The total substance use stigma score was the sum of all items, ranging from 12 to 60, higher scores corresponding with a higher level of stigma. The primary outcome was ART initiation during the 24-month study period. Self-report of ART initiation was assessed at the 12-month and 24-month visits.

Covariates included age, gender, time since HIV diagnosis at baseline, self-reported past 30-day drug use (e.g., opioids, psychostimulants, cannabis, club drugs and sedatives), depressive symptoms in past week (CES-D score ≥16) (Chishinga et al., 2011; Radloff, 1977), HIV symptoms (HIV Symptom Index [HSI]) (Justice et al., 2001) and CD4 cell count collected at the visit prior to ART initiation, or at baseline for those who did not initiate. In order to distinguish HIV symptoms from somatic symptoms of depression, we excluded non-somatic symptoms of depression from HSI (Felt sad, down or depressed; Felt nervous or anxious; Difficulty falling or staying asleep), yielding a 17-item HSI (instead of 20-item) (Amiya et al., 2014). As in previous analyses, we dichotomized each item into absent/not bothersome (0–2) vs. present and bothersome (3–4), and summed the resulting scores to obtain a bothersome symptom count, with a possible range of 0–17. For the analysis, total counts were dichotomized into two categories: symptoms absent (HSI bothersome count=0) vs. symptoms present (>0).

Statistical analysis

We performed descriptive statistics for all variables at baseline. We used generalized estimating equations to model changes in HIV stigma measurements over time. Covariates included in this model were time duration of study participation (in years), gender, age, time since HIV diagnosis (first positive HIV test), CD4 count, past 30-day drug use and depressive symptoms (CES-D≥16 vs. <16). In the second model we included somatic HIV symptoms (HSI 0 vs. > 0) instead of depressive symptoms.

Then, we used pooled logistic regression to estimate the association between time-varying HIV stigma scores and the likelihood of ART initiation. Finally, we used logistic regression to estimate the association between of HIV and substance use stigma scores and the associated odds of ART initiation. Both total stigma scores were included into the analysis as continuous variables to test the interaction between two forms of stigma. An additional exposure variable was two-level intersectional stigma, defined as higher (i.e., above median) substance use stigma and higher HIV stigma scores versus lower (i.e., below median) substance use stigma and HIV stigma scores. We performed all analyses with a significance level of 0.05, using SAS software (version 9.4; SAS Institute, NC, USA).

Results

Baseline Characteristics

The study sample included 165 participants, who were young (median [25th; 75th] = 34 years [30; 37], majority male (115 [70%]), and had lived with HIV for several years (Median [25th; 75th] = 7 years [3; 12]). The median CD4 count (IQR) was 489 (324; 710). A total of 131 participants (85%) had ever visited HIV clinics for CD4 count testing, and 47 (28.5%) had CD4 < 350 (Table 1). About half (n=78 [47.6%]) reported depressive symptoms and less than half (n=74 [44.2%]) used drugs in past 30 days (heroin use and other opioid use [i.e., street methadone] were reported by 18% and 30% of participants, respectively). Less common was cannabis (11%) and psychostimulant use (i.e., amphetamine, methamphetamine or “jeff” [i.e., ephedrine]; 9%), and cocaine/crack use was uncommon (about 1%).

Table 1.

Baseline socio-demographic, clinical and behavior characteristics of study sample (N=165)

Characteristics
Age, years; median (25th; 75th) 34 (30;37)
Gender: female; n (%) 50 (30.3)
CD4 testing ever: yes 131 (85.1)
CD4 cell count; median (25th; 75th) 489 (324;711)
CD4 < 350: yes; n (%) 47 (28.5)
Time since HIV diagnosis, years; median (25th; 75th) 7 (3;12)
Total HIV Stigma (11-item); median (25th; 75th) 23 (19;28)
Substance use stigma score; median (25th; 75th) 61 (49.5;69)
Previous Depression Symptoms: yes; n (%) 78 (47.6)
Recent (past 30-day) drug use: yes; n (%) 73 (44.2)
Polysubstance Use: more than 1 drug; n (%) 28 (38.4)
Recent (past 30-day) drug use: drug type; n (%)
  Heroin 29 (17.6)
  Other opioids 49 (29.7)
  Jeff or ephedrine 1 (0.6)
  Amphetamine or methamphetamine 13 (7.9)
  Cocaine or crack 2 (1.2)
  Heroin mixed with stimulants 1 (0.6)
  Cannabis 18 (10.9)
  Club drugs 0 (0)
  Sedatives 0 (0)
Past month risky drinking based on NIAAA criteria 93 (56)

Study retention

Two thirds (67%, n=111) of participants completed the 12-month study visit and 75% (n=124) completed the 24-month study visit.

Primary endpoint: ART initiation

During the 24-month study period, 51 participants (31%) started ART, with 20 (39%) reporting ART initiation during the first year of the study period. Despite the clinical guideline to initiate ART with a CD4 count <350 cell/mm3, more than half of all participants eligible for ART did not initiate (27 of 47), while 31 of 118 (26%) participants with a CD4 count>350 cells/mm3 initiated ART. Among those who started ART, the median time between HIV diagnosis and ART initiation was 8.5 years (25th percentile 4.68; 75th percentile 13.61).

HIV Stigma over time and Substance use Stigma

The median HIV stigma score at baseline scale was 23 (scores range from 11–44), the mean was 23 (SD =6) with similar scores stratified by the primary outcome (ART initiation) (Table 2). We estimated that on average, the annual change in HIV stigma score was −0.57 (95% CI: - 1.36, 0.22) during 2 years of observation, which appear to be not statistically significant holding other covariates constant (Table 3). The median substance use stigma score (measured once) was 30 (scores range from 12–52), the mean was 30 (SD = 10).

Table 2.

Stigma scores in study sample during the course of the study (overall and stratified by 2-category of ART initiation)

All ART- naïve After ART initiation
HIV Stigma score
Baseline N
Median (25th; 75th)
165
23 (19; 28)
165
23 (19; 28)
--
12-mo N
Median (25th; 75th)
111
24 (20; 29)
91
24 (20; 29)
20
22 (19; 26)
24-mo N
Median (25th; 75th)
124
22 (18; 26)
82
22 (18; 26)
42
23.5 (20; 26)
Substance Use Stigma Score
N
Median (25th; 75th)
134
30 (23; 37)
95
30 (24; 37)
39
30 (33; 39)

Table 3.

Estimates of mean changes in total HIV stigma score (n=165)

Unadjusted estimating equation Fully adjusted estimating equation
Beta (95% CI) p-Value Adjusted* Beta (95% CI) p-value Adjusted** Beta (95% CI) p-value
Years enrolled in study −0.33 (−1.02; 0.36) 0.35 −0.57 (−1.36; 0.22) 0.15 1.01 (0.95, 1.06) 0.84
*

Covariates were years enrolled in study, gender (female vs. male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), depressive symptoms (CES-D≥16 vs. <16).

**

Covariates were years enrolled in study, gender (female vs male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), HIV somatic symptoms (HIS 0 vs. >0).

Stigma and ART initiation

Change in HIV stigma total score was not associated with ART initiation in both regression models, adjusted for covariates including depressive symptoms (AOR 0.99, 95% CI 0.94–1.04) and including somatic HIV symptoms (AOR 1.01, 95% CI 0.95–1.06) (Table 4). The odds of ART initiation were higher among individuals with depressive symptoms (AOR 2.06, 95% CI 1.04–4.07) while somatic HIV symptoms were not associated with the outcome (AOR 1.42, 95% CI 0.75–2.71). In both models, the odds of ART initiation were lower among those who reported recent illicit drug use (AOR 0.39, 95% CI 0.20–0.76 in model adjusted for CES-D and AOR 0.45; 95% CI 0.23–0.87 in model adjusted for HSI). Substance use stigma (as a continuous variable) was not associated with ART initiation (AOR 1.02, 95% CI 0.95–1.09 in model adjusted for CES-D and AOR 1.03, 95% CI 0.97–1.10 in model adjusted for HSI). Similarly, we failed to find an interaction effect of both forms of stigma (both total stigma scores were continuously measured) on ART initiation (Table 5). Intersectional stigma showed no significant effect on ART initiation in any models (categorized stigma variables [high substance use and HIV stigma vs. low substance use or low HIV stigma or low both]) were not associated with ART initiation (AOR 1.02, 95% CI 0.25–4.25 in model adjusted for CES-D and AOR 1.45, 95% CI 0.37, 5.72 in model adjusted for HSI) (Table 6).

Table 4.

The association between of changes in total stigma scores and ART initiation

Unadjusted logistic regression Fully adjusted logistic regression
OR (95% CI) p-Value Adjusted* OR (95% CI) p-value Adjusted** OR (95% CI) p-value
HIV stigma score from timepoint previous to ART initiation, n=165 1.01 (0.96; 1.06) 0.74 0.99 (0.94; 1.04) 0.67 1.01 (0.95; 1.06) 0.84
Substance use stigma score, n=109 1.00 (0.95; 1.06) 0.91 1.02 (0.95; 1.09) 0.57 1.03 (0.97; 1.10) 0.35
*

Covariates were years enrolled in study, gender (female vs. male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), depressive symptoms (CES-D≥16 vs. <16).

**

Covariates were years enrolled in study, gender (female vs. male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), HIV somatic symptoms (HIS 0 vs. >0).

Table 5.

Estimates of association between interaction of HIV stigma and substance use stigma (continuous both variables) and ART initiation (fully adjusted logistic regression), n=103

Adjusted* OR (95% CI) p-value Adjusted** OR (95% CI) p-value
HIV stigma score 1.07 (0.96; 1.19) 0.26 1.10 (0.98; 1.24) 0.12
Substance use stigma score 1.01 (0.94; 1.09) 0.78 1.02 (0.95; 1.09) 0.65
Baseline covariates
 Gender: female 1.50 (0.37; 6.06) 0.57 1.73 (0.41; 7.36) 0.46
 Age 1.02 (0.90; 1.16) 0.71 1.04 (0.92; 1.19) 0.52
 Years since first positive HIV test 0.91 (0.80; 1.04) 0.17 0.93 (0.81; 1.06) 0.25
Covariates from timepoint previous to ART initiation
 CD4 count (100 cells/mm3) 0.68 (0.48; 0.97) 0.03 0.67 (0.46; 0.97) 0.03
 Last 30-day drug use 0.10 (0.02; 0.61) 0.01 0.12 (0.02; 0.68) 0.02
 Depression symptoms 1.78 (0.40; 7.96) 0.45 NA NA
 HIV symptoms NA NA 0.52 (0.12; 2.14) 0.36
*

Covariates were years enrolled in study, gender (female vs. male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), depressive symptoms (CES-D≥16 vs. <16).

**

Covariates were years enrolled in study, gender (female vs. male), age, CD4 count (carry forward), time since HIV diagnosis (first positive HIV test), recent substance (e.g. opioids) use (past 30 days), HIV somatic symptoms (HSI 0 vs. >0).

Table 6.

Estimates of association between intersectional HIV stigma and substance use stigma (dichotomized both variables) and ART initiation (fully adjusted logistic regression), n=103

Adjusted* OR (95% CI) p-value Adjusted** OR (95% CI) p-value
Intersectional stigma (High substance use and high HIV stigma vs. Low substance use and/or low HIV stigma) 1.02 (0.25; 4.25) 0.98 1.45 (0.37; 5.72) 0.59
Baseline covariates
 Gender: female 1.39 (0.35, 5.47) 0.64 1.49 (0.37; 5.97) 0.58
 Age 1.02 (0.90, 1.15) 0.77 1.03 (0.91; 1.17) 0.63
 Years since first positive HIV test 0.90 (0.79, 1.03) 0.12 0.91 (0.80; 1.04) 0.16
Covariates from timepoint previous to ART initiation
 CD4 count (100 cells/mm3) 0.67 (0.48, 0.95) 0.03 0.67 (0.47; 0.95) 0.03
 Last 30-day drug use 0.13 (0.03, 0.70) 0.02 0.19 (0.04; 0.88) 0.03
 Depression symptoms 2.44 (0.57, 10.42) 0.23 NA NA
 HIV symptoms NA NA 0.72 (0.19; 2.71) 0.63

Discussion

In this longitudinal analysis of 165 HIV-positive, ART-naïve at enrollment PWID, who participated in an observational cohort in Saint Petersburg, Russia, HIV stigma did not change significantly over 24 months of follow up in its natural course (i.e., in the absence of any anti-stigma interventions). Using the same instruments than in this study, we previously documented a similar median HIV stigma score in a larger sample of PLWH with unhealthy alcohol use in St. Petersburg, Russia (Lunze et al., 2017); and similar HIV and substance use stigma scores in research conducted in Ukraine among HIV-positive PWID who received medication for opioid use disorder (Sereda et al., 2020).

The higher proportion of participants followed-up at the 24-month visit might be explained by us implementing more strategies to enhance retention in study (e.g., additional phone calls, contact over messaging services and reaching out to previously specified close contacts as agreed to in the informed consent process).

Previous cross-sectional and longitudinal studies suggest that HIV stigma can be a barrier to ART initiation and utilization of HIV services in the general population living with HIV (Mahajan et al., 2008; Malta et al., 2014) and specifically among people who use drugs (Kumar et al., 2018). Notably, in this study we measured HIV stigma several years after HIV diagnosis (median 8.5 years), and participants may have developed stigma coping mechanisms, which could partly explain the lack of stigma changes. For example, HIV stigma might reach a stable level after living with HIV for years. However, we have little indications about public interventions that might have impacted this study’s participants’ stigma experiences. Notably, the Russian government and public administration lacks an HIV or SU stigma strategy. Civil society organizations have implemented educational stigma campaigns, including in St. Petersburg, but those have been limited in scope. A majority of participants in this study sample did not start ART during the 2-year period of observation (2012–2017). A meta-analysis of the association between depression and ART initiation, of studies mostly conducted in the US, concluded that PWLH with depression were less likely to initiate ART (Tao et al., 2018), inconsistent with this study, which found a positive link between depressive symptoms and ART initiation. Some previous literature, including studies conducted in Russia (Goodness et al., 2014), yielded inconclusive results. This study’s observed association of depressive symptoms and ART initiation might be confounded by somatic symptoms of depression and HIV symptoms (S. C. Kalichman et al., 2000), given participants’ prolonged period of living with HIV since first diagnosis in this study cohort. However, our analyses did not confirm this possible explanation. Somatic HIV symptoms did not significantly moderate the effect of stigma on ART initiation.

A previous study found that patients’ active opioid use has often prompted prescribers in Russia to delay ART due to the assumption of low adherence (Feelemyer et al., 2015; Vetrova et al., 2020). Other barriers or facilitators to ART initiation such as emotional, cognitive, social and behavioral characteristics reported in previous studies, including anxiety, lack of social support and substance use (Logie et al., 2018; Shaboltas et al., 2013; Turan et al., 2017) might have a greater impact on ART initiation in this population than stigma. Excessive alcohol consumption, which was an inclusion criterion for the nested ZINC clinical study, or ongoing substance use, reported by about half of participants, might have further contributed to the low ART initiation rate in this cohort. The current study did not examine to which degree PLWH experienced stigma related to unhealthy alcohol use. Recent research has suggested a negative mediating effect of alcohol-related stigma on the association between alcohol use and ART adherence among PWLH in South Africa (Kalichman et al., 2020). Recognizing that Russia is a country with one of the highest alcohol consumptions per capita in the world, future studies in this population, where unhealthy alcohol use is common, need to explore alcohol stigma’s role on ART.

Our results confirm adverse associations between recent drug use, mainly opioids, and ART initiation (Celentano & Lucas, 2007; Gwadz et al., 2016; Matsuzaki et al., 2018; Murray et al., 2012; Wolfe, 2007; Wolfe et al., 2010). However, the observed negative effect of active use might not be direct, but rather highlight the vulnerability of the participants. A cross-sectional study conducted among people living with HIV in St. Petersburg between 2008 and 2009, during the first stage of the ART-era in Russia, found that only half of participants initiated ART (Amirkhanian et al., 2011). This study found that patients’ refusal of treatment was associated with more frequent experiences of discrimination, including in healthcare settings, and with a higher level of depressive symptoms. While shorter HIV duration and fewer HIV and depressive symptoms were predictive of not initiating ART (Amirkhanian et al., 2011). Interestingly, this study’s sample characteristics were similar to our sample in terms of age and duration of HIV diagnosis.

ART initiation is a complex process in Russia, especially for persons with multiple health needs and layered stigmatized social identities. The time period of over 8 years from diagnosis of HIV to onset of ART needs to be shortened. Future investigations should consider the effect of longitudinal changes in stigma on ART initiation among the vulnerable population of PWID with the observation period starting early after their first positive HIV test and take into account other highly stigmatized social identities. The main strength of our study is the longitudinal design with repeated measurements of HIV stigma over a 2-year period. To our knowledge, this was the first attempt to assess the temporal association between stigma and ART initiation in this population.

Limitations

There are several limitations to this study. First, we used self-reported measures to identify the primary outcome (ART initiation). One fourth of participants did not complete a 12 month visit and one forth did not complete the final 24 month visit. This might have introduced further selection bias into our study. Our analyses are subject to recall and social desirability bias, which might have lead to misreporting of stigma experiences. The extended median time from HIV diagnosis to ART initiation of 8.5 years in this sample, a period in which many with HIV develop HIV related complication and AIDS-defining morbidities that are potentially stigma-related, might have led to survivor bias. Together, these biases and limitations might have affected the measures of association between stigma and ART initiation; and partly explain the lack of associations observed in this study. Two years of observation might be an insufficient time period to detect change in stigma after several years of living and coping with both HIV and substance use disorders. This dataset might have been underpowered to detect changes in stigma and associations with ART initiation.

Conclusion

In this study we found no change of HIV stigma over time, and no association between HIV stigma and substance use stigma and ART initiation in a cohort of HIV-positive PWID in Russia. Our findings highlight several fields for future investigation: 1) to test the impact of anti-stigma interventions, such as anti-stigma campaigns targeting providers and the public, and psychosocial support for affected people, on stigma and care-seeking behavior, 2) to examine the mediating individual factors specific for PWID, such as active substance use, on stigma’s effect on ART initiation; 3) to evaluate the effect of other structural factors, in addition to stigma, on ART initiation in vulnerable populations; and 4) to develop validated measures for other forms of stigma and their intersection in Russian-speaking populations.

Supplementary Material

1

Acknowledgements

The authors thank the Russia ARCH participants and appreciate the contributions of the staff at St. Petersburg AIDS Center who helped with recruitment, in particular Ludmila Gutova and research staff who conducted the assessments, in particular Janna Vasylieva, and study nurse, Anna Kazishvili. This work was supported by grants from National Institute on Drug Abuse [grant numbers K99DA041245, 4R00DA041245]; 2018 National Institute on Drug Abuse (NIDA) International Visiting Scientists and Technical Exchange Program (INVEST); and by grants from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) in support of URBAN ARCH [grant numbers U24AA020778, U24AA020779, U01AA0020780, U01AA021989]; and the Providence/Boston Center for AIDS Research [grant number P30AI042853].

Footnotes

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Competing interests

The authors have no competing interests to declare.

Author disclosure statement

The content is solely the responsibility of the authors and does not represent the official views of the National Institutes of Health. No conflicting financial interests exist.

Declaration of interests

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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