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J Gen Intern Med. 2009 February; 24(2): 247–251.
Published online 2008 November 18. doi:  10.1007/s11606-008-0854-z
PMCID: PMC2628985

Disparities in Reported Reasons for Not Initiating or Stopping Antiretroviral Treatment Among a Diverse Sample of Persons Living with HIV



Disparities in the use of antiretroviral therapy (ART) for HIV disease have been documented across race, gender, and substance use groups.


The current analysis compares self-reported reasons for never taking or stopping ART among a diverse sample of men and women living with HIV.


Cross-sectional interview.


HIV + (N = 3,818) adults, 968 of whom reported discontinuing or never using ART.


Computerized self-administered and interviewer-administered self-reported demographic and treatment variables, including gender, race, ethnicity, CD4 count, detectable viral load, and reported reasons for not taking antiretroviral therapy.


Despite equivalent use of ART in the current sample, African-American respondents were 1.7 times more likely to report wanting to hide their HIV status and 1.7 times more likely to report a change in doctors/clinics as reasons for stopping ART (p = .049, and p = .042) and had odds 4.5 times those of non-African Americans of reporting waiting for viral marker counts to worsen (p = < .0001). There was a lower tendency (OR = 0.4) for women to endorse concerns of keeping their HIV status hidden as a reason for stopping ART compared to men (p = .003). Although those with an IDU history were less likely to be on ART, no differences in reasons for stopping or never initiating ART were found between those with and without an IDU history.


A desire to conceal HIV status as well as a change in doctors/clinics as reasons for discontinuing ART were considerably more common among African Americans, suggesting that perceived HIV/AIDS stigma is an obstacle to maintenance of treatment. Findings also indicate differences in reasons for stopping ART by gender and a perceived desire to wait for counts to worsen as a reason for not taking ART by African Americans, regardless of detectable viral load, CD4 count, age, education, employment, sexual orientation, and site.

KEY WORDS: HIV/AIDS, treatment disparities, gender, race, ethnicity, substance use


Throughout the HIV epidemic in the US, women, African Americans, and those with injection drug use histories are less likely to receive antiretroviral therapy (ART) for HIV disease, despite equivalent treatment indications14. Although there is evidence that these disparities are narrowing over time57, they have not been eliminated. Efforts to reduce disparities have targeted policy and educational approaches8, but a greater understanding of personal factors associated with non use of ART is needed. The purpose of the current analysis is to report group differences in self-reported reasons for not taking ART among a diverse sample of HIV-infected men and women. Understanding reasons for not utilizing available treatments from patients’ perspectives can inform ongoing efforts to reduce treatment disparities.


HIV-positive individuals in four US cities (San Francisco, Los Angeles, Milwaukee, and New York City) were screened between July 2000 and January 2002 for a randomized behavioral prevention trial9. Respondents were at least 18 years of age, provided written informed consent and medical documentation of HIV, and did not evidence severe neuropsychological impairment or psychosis. All activities were approved by the sites’ Institutional Review Boards (IRB). Procedures involved a combination of Audio Computer-Assisted Self-Interviewing (ACASI) and Computer-Assisted Personal Interviewing (CAPI) using the Questionnaire Development System (QDS), Nova Research Company.

Respondents received US$ 50 for completing the interview; additional details of study procedures are provided elsewhere10,11. The current analyses focus on the baseline screening data of the subsamples of those respondents who indicated that they had previously stopped ART or had never initiated ART.


Background data included age, race, gender, injection drug use (IDU) in the prior 12 months, self-reported CD4 count, reported detectable HIV viral load, and length of HIV diagnosis. Respondents not on ART were asked if they had ever been on ART. Those not on ART were asked to select all applicable reasons for never taking or for stopping ART from a comprehensive list of reasons (see Appendix).

Statistical Analysis

The selection of reasons for never taking or stopping ART was guided by efforts to identify the most likely causes of disparities (Table 2). These emphasized the potential impact of lack of access to care and the potential role of stigma. The objective of this analysis was not to determine clinical indications for ART, but rather to analyze differences across groups in the self-reported reasons for ART non-use. In doing so, it was important to account for the likelihood that individuals may be prescribed ART based on disease progression. To partially control for potential group differences in clinical indication for ART, we entered detectable vs. undetectable viral load and most recent CD4 count into the models. These were included in the absence of nadir CD4 data, which would have been a preferable marker of clinical indication for ART. We controlled for age, education, employment, sexual orientation, and site in all analyses. Initial logistic regressions of each of the outcomes (0 = no; 1 = yes) on single explanatory variables and control variables were conducted. Final multivariate models included all explanatory variables from the initial models and the same control variables (viral load, most recent CD4 count, age, education, employment, sexual orientation, and site). Odds ratios and profile likelihood-based 95% confidence intervals are reported for all single degree-of-freedom effects; for multi-category explanatory variables multiple degree-of-freedom omnibus likelihood ratio tests are reported. Analyses were conducted with SAS v9.1.3.

Table 2
Initial and Final Multivariate Logistic Regression Results


Sample Description and Treatment Variables

Of the 3,818 individuals interviewed, 399 (10.5%) indicated never having taken ART (Table 1). This subsample was mostly African American (57%), male (75%), and had no history of IDU (86%). In addition, 569 (14.9%) indicated previously taking ART. Those who had stopped ART were mostly African American (53%), male (68%), and had no history of IDU (81%).

Table 1
Sample Characteristics

Initial Logistic Regression Model Results

When comparing pairs of ART usage groups (never, current, or past use of ART) along the dimensions of race, gender, and IDU history, we found the following patterns, after considering CD4 count, viral load, age, education, employment, sexual orientation, and study site: Compared to those who had stopped ART, men were more likely than women to have never taken ART (OR = 1.5; 95% CI = 1.02, 2.21). Compared to those currently on ART, individuals with an IDU history were more likely to have never been on ART than non-IDUs (OR = 2.05; 95% CI = 1.54, 2.74), and they were less likely than non-IDUs to have stopped prior ART treatment (OR = 0.66; 95% CI = 0.45, 0.95). There were no differences between the ART groupings of African-American and non-African-American respondents.

Final Logistic Regression Model Results

After considering site, most recent CD4 count, detectable viral load, sexual orientation, education, and age (see Table 2), multivariate logistic regression revealed that African Americans had odds 4.5 times relative to non-African Americans of reporting that they were waiting for CD4/VL to worsen as a reason for never starting ART (95% CI = 2.0, 10.1). African Americans also had higher odds of reporting having changed doctors/clinics (OR = 1.7; 95% CI = 1.02, 2.7) and a desire to keep their HIV status hidden (OR = 1.7; 95% CI = 1.004, 3.0) as reasons for stopping ART. Women had lower odds than men of endorsing concerns about keeping their HIV status hidden (OR = 0.4; 95% CI = 0.2, 0.7) as a reason for stopping ART. No differences were found between those with and without a history of IDU. Forty-three African Americans reported discontinuing ARVs to hide their HIV status. Of these participants (mean age 40.8 years, SD = 6.6), most were male (60%), had no history of IDU (91%), and reported heterosexual orientation (56%).


Among those respondents who had never taken ART, there was an increased likelihood for African Americans to report that they were waiting for their viral markers (CD4 and viral load) to worsen. While the current data cannot rule out the possibility that ART was not clinically indicated for those who report waiting to initiate treatment, the analysis took into account proxy markers for disease progression: detectable viral load and most recent CD4 count.

Among those who reporting having stopped a previous ART regimen, African Americans were more likely to endorse wanting to hide their HIV status as a reason for discontinuing ART. Such a difference suggests that HIV-related stigma may be a more salient barrier to successful maintenance of care for African Americans than for others living with HIV12,13. It may be that this pattern reflects a larger mistrust about HIV and HIV treatment that has been reported among African Americans in the US. In a recent study with 500 randomly selected African Americans, Bogart and Thorburn found that a substantial proportion endorsed believing that HIV was an artificially made virus (48%), that information and a cure for HIV were being withheld from the poor (59% and 53%, respectively), and that those who take HIV medications are guinea pigs for the government (44%)14. It is possible that these beliefs may negatively influence decisions to initiate or continue HIV treatment and may therefore partially drive the differences reported in the present sample. Additionally, African Americans had higher odds of reporting a change in doctors/clinics as a cause for stopping ART. This may indicate a lack of continuity of providers and care settings, which has been linked to poorer clinical outcomes over time in other studies15,16.

Women were more likely than men to have previously stopped ART, but did not differ in the stated reasons for initializing treatment. Among those stopping ART, women were less likely than men to report concern over wanting to hide HIV status in their decision-making. This may reflect a different contextual context for women living with HIV, which may vary in terms of level of HIV stigma, isolation, and access to resources and peer support17,18. It is also unknown whether some women in the sample initiated ART use during pregnancy to prevent vertical transmission and subsequently stopped ART.

Limitations of the current data include the use of a convenience sample from several years prior, cross-sectional design, and self-report data. These factors may give overestimated rates of ART usage, as many respondents were recruited from clinic settings. Knowing nadir CD4 would have strengthened our analysis of group differences in current ART usage rates. Finally, these data were collected up to early 2002 and therefore may not reflect current rates of ART use or current issues in ART decision-making.

Findings represent a step toward understanding the mechanisms by which disparities in HIV care may result. Of particular significance is that although African Americans did not differ from other groups on rates of ART usage, those who were not currently using ART disproportionately cited barriers related to stigma and continuity of treatment factoring into their decision-making. Gender differences in the factors driving decision-making about treatment also suggest that women and men may have different informational needs when making decisions about care.


This study was funded by cooperative agreements between the National Institute of Mental Health and the University of California, Los Angeles (U10MH057615); HIV Center/Research Foundation for Mental Hygiene Inc./New York State Psychiatric Institute (U10MH057636); the Medical College of Wisconsin (U10MH057631); and the University of California, San Francisco (U10MH057616).

Conflict of interest None disclosed.


Reasons for Stopping or Discontinuing ARV Therapy

  1. Doctor told you to stop
  2. The drug(s) did not work
  3. The drug(s) initially worked, but then stopped working
  4. You switched to other drugs
  5. You did not want side effects of the drugs
  6. Could not afford the drug
  7. You were on too many medications
  8. Your partner or friends suggested you stop taking them
  9. You changed doctors or clinics
  10. You prefer alternative treatments
  11. You don’t want anyone to find out that you are HIV-positive
  12. You decided to stop because your CD4 and VL numbers have been good
  13. You believe you have been cured of HIV

Reasons for Never Taking ARV Therapy

  1. You could not afford the medications
  2. Your doctor never offered them to you
  3. Your family/friends discouraged you from taking them
  4. You are not receiving medical care
  5. You did not want the side effects
  6. You were concerned about toxicity
  7. You don’t think the medications work
  8. You are worried about becoming resistant to the medications
  9. You prefer alternative treatments
  10. You don’t want anyone to find your pills and figure out that you are HIV-positive
  11. You are waiting until your CD4 or VL numbers get worse to take the medications


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