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

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Abstract

BACKGROUND

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

OBJECTIVE

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

DESIGN

Cross-sectional interview.

PARTICIPANTS

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

MEASUREMANTS

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.

RESULTS

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.

CONCLUSIONS

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.

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Acknowledgments

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.

Author information

Authors and Affiliations

  1. Center for AIDS Prevention Studies, University of California, San Francisco, San Francisco, CA, USA

    Mallory O. Johnson, Margaret A. Chesney, Torsten B. Neilands, Samantha E. Dilworth & Stephen F. Morin

  2. HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, NY, USA

    Robert H. Remien

  3. Center for AIDS Intervention Research, Medical College of Wisconsin, Milwaukee, WI, USA

    Lance S. Weinhardt

  4. Center for Community Health, University of California, Los Angeles, Los Angeles, CA, USA

    F. Lennie Wong

Authors
  1. Mallory O. Johnson
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  2. Margaret A. Chesney
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  3. Torsten B. Neilands
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  4. Samantha E. Dilworth
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  5. Robert H. Remien
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  6. Lance S. Weinhardt
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  7. F. Lennie Wong
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  8. Stephen F. Morin
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Consortia

NIMH Healthy Living Project Team

Corresponding author

Correspondence to Mallory O. Johnson.

Appendix

Appendix

Reasons for Stopping or Discontinuing ARV Therapy

  1. 1.

    Doctor told you to stop

  2. 2.

    The drug(s) did not work

  3. 3.

    The drug(s) initially worked, but then stopped working

  4. 4.

    You switched to other drugs

  5. 5.

    You did not want side effects of the drugs

  6. 6.

    Could not afford the drug

  7. 7.

    You were on too many medications

  8. 8.

    Your partner or friends suggested you stop taking them

  9. 9.

    You changed doctors or clinics

  10. 10.

    You prefer alternative treatments

  11. 11.

    You don’t want anyone to find out that you are HIV-positive

  12. 12.

    You decided to stop because your CD4 and VL numbers have been good

  13. 13.

    You believe you have been cured of HIV

Reasons for Never Taking ARV Therapy

  1. 1.

    You could not afford the medications

  2. 2.

    Your doctor never offered them to you

  3. 3.

    Your family/friends discouraged you from taking them

  4. 4.

    You are not receiving medical care

  5. 5.

    You did not want the side effects

  6. 6.

    You were concerned about toxicity

  7. 7.

    You don’t think the medications work

  8. 8.

    You are worried about becoming resistant to the medications

  9. 9.

    You prefer alternative treatments

  10. 10.

    You don’t want anyone to find your pills and figure out that you are HIV-positive

  11. 11.

    You are waiting until your CD4 or VL numbers get worse to take the medications

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Johnson, M.O., Chesney, M.A., Neilands, T.B. et al. Disparities in Reported Reasons for Not Initiating or Stopping Antiretroviral Treatment Among a Diverse Sample of Persons Living with HIV. J GEN INTERN MED 24, 247–251 (2009). https://doi.org/10.1007/s11606-008-0854-z

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  • DOI: https://doi.org/10.1007/s11606-008-0854-z

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