‘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 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 since 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 hoped for success of “test and treat” protocols.

Challenging the Paradigm: Anthropological Perspectives on HIV as a Chronic Disease

“…For these people, the promise of ‘manageable’ HIV disease is buried under the weight of these daily struggles, most of which cannot be ‘managed’ through the health care system. McGrath and colleagues (2012) reported that even when infected persons engage with medical care, they can ‘slip through the cracks’ of the medical care system, failing to receive HIV-specific care until late in the disease process. Indeed, the very factors that increase vulnerability to HIV risk, such as poverty and lack of education, make it difficult to receive the care needed to achieve the promise of a manageable disease.…”