No one left behind? Palliative care at the 20th international AIDS conference

The conference has welcomed participants from all around the globe. People living with HIV/AIDS, governments, non-governmental organizations (NGOs) and industry have come together to advance the global response to HIV. 

The program includes prevention, treatment, care and support but is almost silent on the fact that millions around the world will need hospice palliative care in the next decade. The need to provide end of life care as well as good pain and symptom management as part of the global response to HIV is immense. A handful of poster presentations and a few mentions are all the profile that end of life care is receiving.

Are those of us working in hospice palliative care part of the problem? Did we not work hard enough to influence the conference agenda? The children’s agenda for this conference contained almost nothing on hospice palliative care.

It is not that there is nothing to be said. According to the Global Atlas of Palliative Care at the End of Life, both adults and children with HIV will need palliative care at the end of their lives. Worldwide, adults dying from HIV/AIDS represent 5.7% of the need for palliative care, the 4th largest disease group needing palliative care. In children, this percentage rises to 10.23%. 

In Africa, HIV/AIDS represents the largest disease group for adults needing palliative care at 42%. HIV/AIDS represents 19% of children in need of palliative care in Africa. These statistics only represent the need at the end of life and do not include those needing palliative care through out their life course. They also do not measure those with HIV dying of diseases other than AIDS. 

At last year’s Union for International Cancer Control (UICC) conference in Montreal, Canada hospice palliative care received its own stream. There were some outstanding speakers from the field of hospice palliative care. Interestingly, most participants were also from the hospice palliative care field and the challenge remains: how does the hospice palliative care field influence those in the broader allied health care fields to ensure that good palliative care is available to all who need it?  

I challenge us to do better at the 21st International AIDS Conference planned for July 2016 in Durban, South Africa. Let’s be able to say “No one left behind – including those who need hospice palliative care!”