The current landscape of treatment and care for people living with HIV

Second, the UNAIDS 90x90x90 policy aims for 90% of people with HIV to be tested, of these 90% to be on treatment and 90% of those on treatment to achieve undetectable viral load.

These approaches are underpinned by a clinical argument that early treatment improved outcomes for the individual, and a public health argument that people on treatment with undetectable viral load are unlikely to infect others.

Examining the evidence

Hospice and palliative care have important roles to play in supporting these policies. Large numbers of people will need to be successfully retained in care and maintained on treatment for their whole life. The evidence shows that:

people living with HIV have a high burden of pain (1, 2) and other symptoms (3). There is evidence that pain and symptom burden are associated with sexual risk taking (4), poor adherence to ART(5), treatment switching (6), viral rebound (7), poorer quality of life (8), and suicidal ideation (9).
patients report problems from the point of diagnosis, when they also need support to adjust to their diagnosis (10).
systematic reviewing of the evidence found that psychosocial problems persist alongside treatment, with 34% reporting depression and 28% anxiety (11).
as we now see increasing numbers of people age with HIV, many comorbidities are now presented that need palliation (12).
HIV-related mortality remains a global challenge, with 1.1 million deaths estimated in 2015.
There are several reasons for a lack of attention to pain, including patients’ beliefs that pain must be endured with an HIV diagnosis and physician lack of recognition of pain, and their willingness to enquire, document, monitor and treat pain symptoms (13).

Evidence suggests that HIV physicians detect only a third of patients’ problems during clinical encounters (14,15).

In low and middle income countries, recent evidence has revealed poor availability of analgesia in pharmacies of HIV care facilities, not just for opioids but also among “step 1” analgesics such as paracetamol, and stockouts of analgesics are common (16).

Therefore the hospice and palliative care movements still have important roles in advocating for improved availability of pain relieving drugs, and in teaching how to assess and treat pain.

Models of palliative care provision for people living with HIV

Evidence has shown there are potential models that can provide palliative care for people living with HIV. Here are three examples form Africa. For children, observational data suggests that a person-centred hospice model is effective in stabilising them then initiating treatment for children in South Africa with late stage HIV, who are at risk of immune reconstitution syndrome (17).

For adults with HIV-related pain, a brief educational intervention has been shown to reduce self-reported pain in Malawi (18).

A model of person-centred integrated care taught to existing Anti-retroviral Treatment (ART) nurses in a government clinic improved psychosocial outcomes and quality of life for people on ART (19).

Looking ahead

Looking forward, the roll-out of treatment presents new clinical challenges that require the support and expertise of palliative care.

Ageing with HIV will mean that people on treatment increasingly present with progressive conditions.

The evidence shows that even in high income countries, problems and concerns are not adequately addressed.

A combination of high quality, robust evidence and skilled advocacy are needed to ensure that care is optimal for those who we now expect to live long lives with HIV, and is also required to support them when they die.