Providing a person with HIV infection engages with specialist care and achieves sustained HIV suppression with antiretroviral therapy (ART), morbidity is greatly reduced, life expectancy approaches near normal and the chance of onward transmission of HIV is significantly decreased.[2] [3] [4] During 2013, an estimated 1212 people with diagnosed HIV in Australia were not engaged in care.[1]

Poor retention in care predicts poorer survival with HIV infection. A retrospective analysis of HIV positive outpatients in Europe found those who missed visits within the first year after initiating ART had more than twice the rate of long-term mortality, compared with those who attended all scheduled appointments (2.3 deaths per 100 person-years for patients who missed visits vs 1.0 death per 100 person-years p = 0.02 for those who didn't).[6]

Disengagement can happen at any point in the continuum of care but the time of diagnosis represents a particular time of danger.

Failure to engage with (or remain) in care is multidimensional and multifactorial (Table 2).

 Table 2: Failure to engage: patient characteristics [7]
  • Non-White or predominantly European ethnicity
  • Member of a religious or cultural group with strong taboos around sex and sexuality and injection drug use
  • English as an additional language
  • Heterosexual - particularly if diagnosed in a setting that predominantly cares for gay men
  • Younger age
  • Distrust of mainstream medicine
  • Low level of education
  • Low literacy
  • Lower-income
  • Unemployment
  • No access to Medicare
  • Higher CD4 cell count
  • No acquired immune deficiency syndrome (AIDS) defining illness – the patient feels perfectly well
  • History of or current injecting drug use
  • Social isolation
  • Lower perceived social support
  • Low levels of self-efficacy
  • Psychiatric illness
  • Conflicting work schedules
  • Travelling for work
  • Homelessness
  • Secrecy and fear of disclosure
  • Feelings of no control - helplessness
  • Lack of childcare
  • Lack of transportation
  • Other concurrent crisis