‘Slipping through the cracks’: Policy implications of delays in HIV treatment seeking

Abstract

Public health initiatives to ‘test and treat’ HIV-infected persons require understanding HIV care seeking. A study of 101 HIV-infected women receiving anti-retroviral medications in Kampala, Uganda, examined barriers to HIV care. Participants entered HIV/AIDS care late, despite knowing their risk and having sought care for symptoms. Over half of the participants (51%) reported delays of up to 5 years from when they suspected they were infected to seeking an HIV test. Some women reported that they did not perceive a need to be tested because they ‘knew’ they had HIV due to their partner's death from AIDS. Once tested, delays in entering HIV specific care ranged from less than 6 months to over 5 years. The most common reason reported for entering HIV care was the occurrence of serious or persistent symptoms. Late presentation for HIV care in this cohort is due to the inability of the medical system to link women to appropriate care. Women ‘slip through the cracks’ of this system, despite their care seeking behaviours. The inability to provide linkage to care is a challenge at the health system level that threatens the success of ‘test and treat’ protocols

Keywords:

• Uganda
• HIV care seeking
• AIDS treatment access
• test and treat

Acknowledgements

This study was funded as a supplement to the Center for AIDS Research (CFAR) at Case Western Reserve University, Michael Lederman, M.D., PI (NIH grant number AI316219). The content of this report is solely the responsibility of the authors and does not necessarily represent the official view of the National Institute of Allergy and Infectious Disease or the National Institutes of Health. We thank the women and the health care providers who participated in this study and the staff at the Joint Clinical Research Centre for their assistance with the study. Jude Tibemanya was the study interviewer; Stephanie McClure and Margaret Winchester assisted with data entry and analysis.

Notes

1. We refer to this type of testing as ‘structural testing’ because it is required for certain activities (e.g., travel) and, although voluntary in one sense, it is not undertaken due to suspected risk or known exposure to infection.