Anticipating over 18,000 delegates, the International AIDS Society’s biennial conference brings together scientific, research, community and policy leaders and people living with the illness to advance global efforts to treat and prevent HIV.
One of the meeting’s stated goals is to: “share best practices, learn from one another’s experience and develop new strategies and collaborations” under the theme: ‘Access equity rights now’.
But where is palliative care currently situated within the HIV care continuum and the UNAIDS interim and comparably ambitious 2020 treatment targets: having 90% of all people living with HIV knowing their HIV status, 90% of all people with diagnosed HIV infection receiving sustained anti-retroviral therapy (ART), and 90% of all people receiving ART having viral suppression?
Historically, palliative care has been intricately linked with cancer since the 1960s, when Cicely Saunders undertook pioneering work drawing attention in the United Kingdom to the end of life care needs of people with advanced malignant disease.
Consequently, as they developed internationally, palliative care services have been largely linked to oncology.
This diagnosis-linked development of palliative care, given the relatively low prevalence of HIV in European and North American contexts, has meant the linkages between palliative care and HIV has been comparatively weak. Indeed, palliative care is noticeably understated in the remit of UNAIDS.
By contrast, this is less the case across sub-Saharan Africa, where palliative care service development was accelerated by funding from the United States President’s Emergency Plan for AIDS Relief to address the HIV pandemic. Indeed, Africa seems to be playing catch up with the provision of palliative care to address the increasing burden of non-communicable diseases (NCDs), including cancer.
The focus on treatment – be it for communicable or NCDs – has in part sidelined palliative care globally, compounded as it has been by ongoing erroneous interpretations of exactly what palliative care is.
Caring for those diagnosed with a chronic illness is as important as clinically treating them with ART. Palliative care services relieve pain and suffering from the point of diagnosis for those with life-limiting illnesses, irrespective of what that illness is.
Consequently, central to palliative care development has to be palliative care per se; diseases can be brought under that umbrella rather than situating palliative care under a diagnostic category.
Of course, there will always be opportunities to acquire funding for palliative care services related to a particular disease; but there remains the imperative to strategically advocate for palliative care services as a whole with national governments, thereby helping to ensure local ownership and sustainability.
So what is needed going forward? Advocacy to advance the need for palliative care is crucial. That advocacy must not be disease-specific but rather it should focus on a public health approach to ensure universal access to palliative care, effectively integrating this into health systems.
Lastly, a search of the AIDS conference website reveals there will be no sessions devoted to palliative care in Durban and only one abstract for presentation, which covers the integration of legal aid services using community paralegals.
As for the conference theme of: ‘Access equity rights now’; this feels more like a case of an ‘inequity in health response’.
Much more strategic and institutional advocacy work needs to be done to ensure that palliative care is not only integral to a conference programme, but also to the HIV and NCD global sustainable development agenda.